NEWSFLASH

Hans Hækkerup, Danish politician suffering from MSA

Mon, 9 Jul 2012 21:23:22 +0200

Hans Hækkerup (born 3 December 1945) is a Danish politician who has served as a member of parliament (Folketing) for the Social Democratic party and as the Minister of Defense in four cabinets of Poul Nyrup Rasmussen.

Hækkerup was born in Frederiksberg, Denmark. He is the son of former Minister of Economy Per Hækkerup and former Member of Parliament Grete Hækkerup. He graduated from the Frederiksborg Gymnasium (State School) in 1964 and received a Master of Arts in Economics from the University of Copenhagen in 1973.

After working in several government ministries, Hækkerup was elected to the Folketing in 1979. He held several committee memberships including the Committee on Danish Security Policy, the Committee on Greenlandic Affairs, the Committee on Foreign Affairs and the Committee on Foreign Policy. He was Chairman of the Defense Committee from 1991 to 1993.[1]
As Secretary of Defense for the administration of Poul Nyrup Rasmussen from 1993 to 2000, Hækkerup is considered to have contributed actively to the escalation of Danish military efforts abroad - including Denmark's participation in NATO's military action in Yugoslavia in 1999. He served as Special Representative of the Secretary-General for Kosovo from January 2001 to December 2001.
After leaving office, Hækkerup worked as a research director at the Danish Defense Academy's Institute of Strategy.

Hækkerup was previously married to Lisa Hækkerup. In 2011, Hækkerup was living in Mexico, where his second wife, Susanne Rumohr Hækkerup, is the Danish ambassador.[2] He has four sons: three from his first marriage and one his second.
On April 15, 2011 it was reported that Hækkerup was suffering from Multiple System Atrophy.[2]

1973-1976 Secretary, later Head of Social Affairs
1976-1977 Vice Minister - Ministry of Education
1977-1979 Head of Section, Ministry of Labour
1977-1980 Course supervisors at the Danish School of Public Administration
1981-1985 Consultant in Public Servant Organization
1991-1993 Chairman of the Parliamentary Defense Committee
1993-2000 Minister of Defense
2001 Special Representative of the Secretary-General for Kosovo

http://en.wikipedia.org/wiki/Hans_Hækkerup

http://www.world-msa-day.org/

A MILE & A CANDLE for MSA (Multiple System Atrophy) 2012

Mon, 4 Jun 2012 20:55:15 +0200

World MSA Day:
Worldwide action: A Mile & A Candle for MSA

Worldwide action to be held on the 3rd of October (World MSA Day).

Miles, all day long
Light a candle at 20:00 hrs / 8:00 p.m. for one hour local time

The population of the Earth is estimated to be 7.044.688.950 (as of June 2, 2012). This means that statistically we can estimate that worldwide 347.635* people may be affected with MSA at this time. (*5 cases per 100.000)

We want to have a candle lit for everyone that may be affected with MSA and for all those loved ones who have lost their battle in the past.

A Candle:
You can light your candle at home alone, or with friends and family, or during your local activity that is planned for World MSA Day.

As candles are lit around the globe, a virtual 24-hour wave of light will be created as it moves from time zone to time zone. Please light your candles at 20:00 hrs / 8 p.m. in your local time zone for one hour.

The flame of the candles will unite family and friends all over the world and bring awareness to MSA. If you organize an event, you can sell candles to all participants and send the proceeds to benefit and support local MSA groups. Each single $, €, £ , ¥ counts. (MSA Support Groups who are interested please forward your full information, so we can add your info on the list).

A Mile:
You can walk alone, or with family, friends and neighbors. Every step, every kilometer or mile we will count together. The goal is to attempt to walk around the earth (40.075,016 kilometers or 24,901.55 miles around the Earth at the equator).

Let’s see how far we come this year.
Send in your mileage to be tallied. If you are able to get sponsors for your steps, your wheelchair distance, your miles or kilometer, please forward the proceeds to support local MSA groups.

A Mile and A Candle… please do as much as you are able to do, each step, each inch or centimeter is a start for the 40.075,016 kilometers or 24,901.55 miles needed. Each single candle counts toward the 347.635* needed.

Thanks to all who are willing to create awareness for MSA.

1 KM ET UNE BOUGIE pour l'AMS 2012

Mon, 4 Jun 2012 20:54:24 +0200

Journée Mondiale pour l'Atrophie Multisystématisée
PROCHAINE JOURNEE MONDIALE AMS - LE 3 OCTOBRE 2012

ACTIONS AUTOUR DU MONDE
POUR CETTE JOURNEE DU 3 OCTOBRE :

MARCHER 1 KM ET ALLUMER UNE BOUGIE (A Mile & a Candle for MSA)

POUR LA MARCHE CELA PEUT ETRE A N’ IMPORTE QUEL MOMENT DE LA JOURNEE
POUR LA BOUGIE TOUS A L’ UNISSON ALLUMER LA BOUGIE CHEZ VOUS POUR UNE HEURE ENTRE 20H00 ET 21H00.

LA POPULATION DANS LE MONDE EST ESTIMEE A 7.044.688.950 (7 MILLIARDS 044 MILLIONS 688 MILLE 950 HABITANTS ( STATISTIQUE DU 1ER JUIN 2012 ) Avec ces chiffres, on peut estimer le nombre de cas AMS dans le monde à près de 347635 personnes c( est à dire environ 5 cas pour 100.000 personnes. Nous souhaitons allumer une bougie pour chaque patient atteint d’ AMS et pour tous les êtres chers qui ont perdu leur combat par le passé.

UNE BOUGIE
Vous pouvez allumer une bougie seul ou entouré de vos amis ou familles ou bien pendant une activité que vous aviez programmé durant cette journée AMS
Du fait que les bougies vont briller et brûler à l unisson ce jour là autour du monde, cela va créer une vague virtuelle de bougies qui va passer de fuseau horaire en fuseau horaire tout autour du globe.
Il est important d’ allumer votre bougie à 20.00 précises à l ‘endroit où vous vous trouvez ( heure locale)
Les flammes des bougies vont unir les patients les familles et les amis tout autour du monde et apporter soutien pour l’ AMS
Si vous décidez ce jour là d’ organiser un évènement vous pouvez même vendre des bougies aux participants
Les sommes récoltées peuvent être versées à des associations soutenant la lutte contre l’ AMS

MARCHER UN KILOMETRE
Vous pouvez parcourir ce km seul ou en famille ou avec des amis ou voisins. Chaque pas, chaque mètre, chaque km viendront s’ ajouter et s’ unir
Le challenge serait à nous tous de parcourir le tour de la terre soit 40.075 km.
On verra ce que cela va donner cette année !

Si vous arrivez à avoir des sponsors pour vos pas, votre distance en fauteuil roulant, vos miles ou vos km, n’ hésitez pas à les renvoyer vers les divers centres AMS.

Un km et une bougie …
Essayez de faire du mieux que vous pouvez autant que vous pouvez
Merci beaucoup.

http://www.world-msa-day.org/

Rare Disease Day 2012

Mon, 6 Feb 2012 17:10:13 +0100

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level

February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!

“JiePie Award” ™ September 30, 2011

Tue, 27 Sep 2011 23:33:14 +0200

“JiePie Award”
FOR IMMEDIATE RELEASE: “JiePie Award” Press Release:

The “JiePie Award”
This award, named after the inspiring founder of MSA AMS.be and MSA-BeNeLux.org, will be presented at the annual World MSA day, on October 3, to a person who writes a winning article, theses or a study on MSA.

The award aims to promote research and provide information on MSA and Parkinsonism or Parkinson+.

It was JiePie's aspiration that more research would be done to find a treatment and a cure for this still incurable disease.

This award is a recognition to JiePie's tireless efforts, his courage and deep faith that the cause and a cure for MSA will ultimately be found. In addition it is to act as an encouragement to all who wish to explore the still unknown world of MSA.

Are nominated:

• Perceptuele en akoestische analyse van prosodie bij patiënten met de ziekte van Parkinson, multisysteematrofie en progressieve supranucleaire palsy - Scriptie voorgedragen tot het behalen van de graad van master in de logopedische en audiologische wetenschappen UZ Gent.
Kelly Van Landeghem uit Stekene

• Zorgbehoefte bij de Progressieve Supranucleaire Paralyse-patiënt. - Masterproef ter verkrijging van het diploma van master in de geneeskunde of (arts) Academiejaar 2010-2011 UZA
Lien De Vil uit Boom & Isabel Poppe uit Burcht

• Waarde van Raclopride-PET in de Differentiële Diagnose van de Ziekte van Parkinson en Multipele Systeematrofie
Dr. Kristien Clerinx, GSO Neurologie, UZ Gasthuisberg Leuven

Data for:
Belgian event: September 30th, UZA Antwerpen

Sponsored by Lundbeck,
Lundbeck n.v./s.a. avenue Molière laan 225 1050 Brussels  Belgium

A MILE & A CANDLE for MSA (Multiple System Atrophy)

Tue, 27 Sep 2011 23:26:22 +0200

World MSA Day:
Worldwide action: A Mile & A Candle for MSA

Worldwide action to be held on the 3rd of October (World MSA Day).

Miles, all day long
Light a candle at 20:00 hrs / 8:00 p.m. for one hour local time

The population of the Earth is estimated to be 6.952.785.870 (as of August 1, 2011). This means that statistically we can estimate that worldwide 347.635* people may be affected with MSA at this time. (*5 cases per 100.000)

We want to have a candle lit for everyone that may be affected with MSA and for all those loved ones who have lost their battle in the past.

A Candle:
You can light your candle at home alone, or with friends and family, or during your local activity that is planned for World MSA Day.

As candles are lit around the globe, a virtual 24-hour wave of light will be created as it moves from time zone to time zone. Please light your candles at 20:00 hrs / 8 p.m. in your local time zone for one hour.

The flame of the candles will unite family and friends all over the world and bring awareness to MSA. If you organize an event, you can sell candles to all participants and send the proceeds to benefit and support local MSA groups. Each single $, €, £ , ¥ counts. (MSA Support Groups who are interested please forward your full information, so we can add your info on the list).

A Mile:
You can walk alone, or with family, friends and neighbors. Every step, every kilometer or mile we will count together. The goal is to attempt to walk around the earth (40.075,016 kilometers or 24,901.55 miles around the Earth at the equator).

Let’s see how far we come this year.
Send in your mileage to be tallied. If you are able to get sponsors for your steps, your wheelchair distance, your miles or kilometer, please forward the proceeds to support local MSA groups.

A Mile and A Candle… please do as much as you are able to do, each step, each inch or centimeter is a start for the 40.075,016 kilometers or 24,901.55 miles needed. Each single candle counts toward the 347.635* needed.

Thanks to all who are willing to create awareness for MSA.

1 KM ET UNE BOUGIE pour l'AMS

Fri, 26 Aug 2011 12:11:06 +0200

Journée Mondiale pour l'Atrophie Multisystématisée
PROCHAINE JOURNEE MONDIALE AMS
LE 3 OCTOBRE 2011

ACTIONS AUTOUR DU MONDE
POUR CETTE JOURNEE DU 3 OCTOBRE :

MARCHER 1 KM ET ALLUMER UNE BOUGIE (A Mile & a Candle for MSA)

POUR LA MARCHE CELA PEUT ETRE A N’ IMPORTE QUEL MOMENT DE LA JOURNEE
POUR LA BOUGIE TOUS A L’ UNISSON ALLUMER LA BOUGIE CHEZ VOUS POUR UNE HEURE ENTRE 20H00 ET 21H00.

LA POPULATION DANS LE MONDE EST ESTIMEE A 6 MILLIARDS 952 MILLIONS 785 MILLE 870 HABITANTS ( STATISTIQUE DU 1ER AOUT ) Avec ces chiffres, on peut estimer le nombre de cas AMS dans le monde à près de 347635 personnes c( est à dire environ 5 cas pour 100.000 personnes. Nous souhaitons allumer une bougie pour chaque patient atteint d’ AMS et pour tous les êtres chers qui ont perdu leur combat par le passé.

UNE BOUGIE
Vous pouvez allumer une bougie seul ou entouré de vos amis ou familles ou bien pendant une activité que vous aviez programmé durant cette journée AMS
Du fait que les bougies vont briller et brûler à l unisson ce jour là autour du monde, cela va créer une vague virtuelle de bougies qui va passer de fuseau horaire en fuseau horaire tout autour du globe.
Il est important d’ allumer votre bougie à 20.00 précises à l ‘endroit où vous vous trouvez ( heure locale)
Les flammes des bougies vont unir les patients les familles et les amis tout autour du monde et apporter soutien pour l’ AMS
Si vous décidez ce jour là d’ organiser un évènement vous pouvez même vendre des bougies aux participants
Les sommes récoltées peuvent être versées à des associations soutenant la lutte contre l’ AMS

MARCHER UN KILOMETRE
Vous pouvez parcourir ce km seul ou en famille ou avec des amis ou voisins. Chaque pas, chaque mètre, chaque km viendront s’ ajouter et s’ unir
Le challenge serait à nous tous de parcourir le tour de la terre soit 40.075 km.
On verra ce que cela va donner cette année !

Si vous arrivez à avoir des sponsors pour vos pas, votre distance en fauteuil roulant, vos miles ou vos km, n’ hésitez pas à les renvoyer vers les divers centres AMS.

Un km et une bougie …
Essayez de faire du mieux que vous pouvez autant que vous pouvez
Merci beaucoup.

http://www.world-msa-day.org/

A CANDLE for MSA

Fri, 19 Aug 2011 19:27:29 +0200

World MSA Day:
Worldwide action: A Mile & A Candle for MSA

Worldwide action to be held on the 3rd of October (World MSA Day).

Miles, all day long
Light a candle at 20:00 hrs / 8:00 p.m. for one hour local time

The population of the Earth is estimated to be 6.952.785.870 (as of August 1, 2011). This means that statistically we can estimate that worldwide 347.635* people may be affected with MSA at this time. (*5 cases per 100.000)

We want to have a candle lit for everyone that may be affected with MSA and for all those loved ones who have lost their battle in the past.

A Candle:
You can light your candle at home alone, or with friends and family, or during your local activity that is planned for World MSA Day.

As candles are lit around the globe, a virtual 24-hour wave of light will be created as it moves from time zone to time zone. Please light your candles at 20:00 hrs / 8 p.m. in your local time zone for one hour.

The flame of the candles will unite family and friends all over the world and bring awareness to MSA. If you organize an event, you can sell candles to all participants and send the proceeds to benefit and support local MSA groups. Each single $, €, £ , ¥ counts. (MSA Support Groups who are interested please forward your full information, so we can add your info on the list).

A Mile:
You can walk alone, or with family, friends and neighbors. Every step, every kilometer or mile we will count together. The goal is to attempt to walk around the earth (40.075,016 kilometers or 24,901.55 miles around the Earth at the equator).

Let’s see how far we come this year.
Send in your mileage to be tallied. If you are able to get sponsors for your steps, your wheelchair distance, your miles or kilometer, please forward the proceeds to support local MSA groups.

A Mile and A Candle… please do as much as you are able to do, each step, each inch or centimeter is a start for the 40.075,016 kilometers or 24,901.55 miles needed. Each single candle counts toward the 347.635* needed.

Thanks to all who are willing to create awareness for MSA.

A MILE and A CANDLE for MSA

Mon, 15 Aug 2011 10:46:58 +0200

World MSA Day:
Worldwide action: A Mile & A Candle for MSA

Worldwide action to be held on the 3rd of October (World MSA Day).

Miles, all day long
Light a candle at 20:00 hrs / 8:00 p.m. for one hour local time

The population of the Earth is estimated to be 6.952.785.870 (as of August 1, 2011). This means that statistically we can estimate that worldwide 347.635* people may be affected with MSA at this time. (*5 cases per 100.000)

We want to have a candle lit for everyone that may be affected with MSA and for all those loved ones who have lost their battle in the past.

A Candle:
You can light your candle at home alone, or with friends and family, or during your local activity that is planned for World MSA Day.

As candles are lit around the globe, a virtual 24-hour wave of light will be created as it moves from time zone to time zone. Please light your candles at 20:00 hrs / 8 p.m. in your local time zone for one hour.

The flame of the candles will unite family and friends all over the world and bring awareness to MSA. If you organize an event, you can sell candles to all participants and send the proceeds to benefit and support local MSA groups. Each single $, €, £ , ¥ counts. (MSA Support Groups who are interested please forward your full information, so we can add your info on the list).

A Mile:
You can walk alone, or with family, friends and neighbors. Every step, every kilometer or mile we will count together. The goal is to attempt to walk around the earth (40.075,016 kilometers or 24,901.55 miles around the Earth at the equator).

Let’s see how far we come this year.
Send in your mileage to be tallied. If you are able to get sponsors for your steps, your wheelchair distance, your miles or kilometer, please forward the proceeds to support local MSA groups.

A Mile and A Candle… please do as much as you are able to do, each step, each inch or centimeter is a start for the 40.075,016 kilometers or 24,901.55 miles needed. Each single candle counts toward the 347.635* needed.

Thanks to all who are willing to create awareness for MSA.

My Visit With Mom

Sat, 6 Aug 2011 23:34:34 +0200

August 6, 2011 Posted by Frank Cervone frank@hollywoodrepublican.net

Well, the day finally arrived. The day that we leave for Florida to visit my Mother. If you remember, last week I asked for your opinion whether or not to tell her about my disease and the progression its taking. You all responded with a resounding yes! Tell her. And each of you had an overwhelming reason why I should. Some of you even had wonderful ideas of how to do it. Those of you that are parents gave me your point of view as a parent. It was so helpful. I was only looking at it from my point of view, and honestly, as one of you pointed out with love, I think I was looking for an excuse not to tell her. Not to protect her, but more to protect me. I believe my own self preservation instinct was taking over. I could protect myself from the pain it was going to cause me.
Let’s go back to last Sunday. Susan and I showered and got ready for church. Pastor Pelt had called on Saturday to remind us that we were going to break bread together after the service. I knew I had really pushed myself over the past week. For some reason, since Hospice has been involved in my life, I feel a sense of urgency to get things done. So, I was not feeling very well and I was struggling to hide it from everyone.
We always sit in the rear pew. Not to avoid Pastor Clayton’s words that sometimes feel like they were meant just for me, but just in case something happens, that it is less of a distraction. Fred Whitt saying the prayer when I whispered to Susan, “I’m not going to make it.” She asked if I needed to sit, and I told her I was OK. She instinctively wrapped both arms around me. She is way too familiar with what was coming. Next thing we knew, I was sliding through her arms toward the floor. She just held on to me and we both went to the floor. I don’t know what happened from there, so I will let Susan explain the following events.
Like Frank said, I just held onto him and we went to the floor. There was what seemed to me, a very loud sound of surprise as we went down. Instantly there were people around us. I was halfway in between the pew and the aisle, and Frank halfway under the pew that had, a few moments ago, been in front of us. Someone asked if they should call the paramedics and I answered no. We just stayed on the floor and I kept talking to him trying to bring him back into this world. I do have to admit, it is getting harder and harder to bring him back, and every time it happens, I silently pray that I will be able to bring him back one more time.
It started to get warm in the church and I could feel what seemed to be lots of people around us. I didn’t dare look up so I just kept focused on Frank’s face looking for some glimmer of response. Just then I heard Fred, make an announcement that Frank was still down and that he didn’t know what the situation was, but if anyone wanted to come to the alter to pray for him, to please come forward. I still didn’t look up, but I know I heard the rustling of what sounded like an awful lot of people moving toward the front of the church. At about the same time, someone one again asked if I needed the paramedics and I said yes.
The medics arrived shortly after that and were a team that had treated Frank before so they were familiar with the drill. Only this time, Frank was wedged between two church pews. They assessed his situation, saw that there was no way he was going to be able to assist them in extricating him and went right to work. One medic grabbed his shoulders, one grabbed his legs and one grabbed him by the belt and they pulled him out into the aisle and onto the medic cot. They rushed him out to the waiting ambulance and went to work on him. He was once again transported to Kettering Medical Center.
Kettering has one of the finest emergency rooms I’ve ever been a patient in. Heather and Brittany jumped right in and started taking my vitals and hooking me up to the machines that would give them a better idea of what my body was doing. Heather was very personable and distracted me with idle chatter about New York and chicken riggies while she drew blood. All of a sudden two ladies wearing RN badges walked into the room. They just stood there looking at us. They didn’t speak until Heather asked them if she could help them. “We’re from Hospice” was their only reply. It felt as if the temperature of the room dropped 30 degrees instantly. The original image I had conjured in my head of Hospice workers came flooding back. They didn’t introduce themselves. Finally, the one with the name tag ‘Kate’ announced that she didn’t think I looked that bad. My first thought was, okay, they must be the death squad. She abruptly asked if the doctor had been in yet, and when she was told no, uttered that there was nothing they could do at this time. Then said they would talk to the emergency room doctor to determine what further action to take. Kate was the one that did all the talking, and only after Susan asked, did Linda, the other Hospice worker give her name. Susan made small talk and was trying to make sure she had followed the instructions she had been given by Hospice regarding crisis care. Kate told her that since we had been in church it was OK to have called the paramedics, but if we had been home, she should have waited for a Hospice worker to come to our house. She went on to say that if the doctor thought I should be admitted to the hospital, they would transport me to the inpatient unit at their facility. I glanced at Susan and saw the look in her eyes. Anyone that knows Susan can imagine the look on her face. Her right eyebrow was raised and she was staring at Kate with a look that would even make me feel uncomfortable. Then, with a very calm, matter-of-fact tone, Susan stated, “He will not be going to your facility.” With that, Kate and Linda left the room went to the nurse’s station. I didn’t see them again. The hospital ran all the usual tests and once I was able to function on my own, I was sent home with instructions to get plenty of rest and follow up with my family doctor.
Monday came and I decided to go down to the Montgomery County Courts for the pre-trial hearing of our friends’ son to see if I could be of any assistance. The hearing was scheduled for 1:45 p.m. Angelina had dropped me off on her way to work. I was not feeling very steady and knew I probably should have not been there, when I spotted two Dayton Paramedics. I approached them, told them who I was and that I was suffering from and gave them Susan’s telephone number. I want to thank Paramedic Rob Shaw for keeping a watchful eye on me. After the hearing, we stopped by Fricker’s for lunch before Bob took me home. I thought I would just lie down for a few minutes before I needed to get ready for the Council meeting. I woke up what I thought was only few minutes later and started getting dressed. Susan sat up and asked me what I was doing. I told her I was getting ready for council. She got up, started undressing me again and informed me that it was 2:44 a.m. She warned me that I was supposed to be resting. I guess I missed that meeting.
Tuesday came and I decided I wanted to go to an auction in Brookville. I rustled Angelina out of bed and off we headed in search of treasure. It was very hot inside this building and Angelina kept asking me if I was OK and forcing me to drink water. She left my side for a few minutes and while she was gone, I get a call from Susan. I think Angelina ratted me out. I could tell by the way Susan started the conversation….”What are you doing?” After a couple of minutes I promised her I would leave soon, I went back to buying treasures.
Wednesday morning we boarded our flight to Tampa. We flew Delta, and I have to tell you, they were wonderful. I know it’s a bother to deal with a passenger in a wheel chair, but they assisted us with nothing but smiles. We experienced that same customer service in Atlanta during our transfer. We arrived with no delay and feeling like they really cared. It was raining in Florida, but the heat and humidity were not giving anyone a break.

I had decided that I would pick up a pizza and ring my Mom’s doorbell. If I had something in my hand like that, there would be little chance that she would jump on me. I rang the bell and my brother Paul opened the door. With my sunglasses on and the pizza up in front of my face, I announced in my best disguised voice, “pizza delivery”. Paul called to my Mother asking her if she ordered pizza. She came into the room saying she hadn’t. I took off my sunglasses and lowered the pizza and asked if she was sure she hadn’t ordered a pizza. She said no again. I looked at her and asked, “what’s the matter? Don’t you recognize your own son?” It was then that she recognized it was me.
We sat and ate the pizza and just chatted to catch up on our lives. I had not been to Florida For eight years, so she was showing me the improvements she had made. I had originally planned to tell her about my MSA on Thursday night, but then decided that I just wanted to get it over with. One of you had suggested that I make a book with all my articles from A Hollywood Republican. I told her that I had something for her and that we needed to talk. I handed her the book and waited while she read the front cover, My Journey with Multiple System Atrophy. I explained that MSA was my diagnosis. I told her that 50,000 Americans suffer from it. I told her it was extremely rare and that there was no treatment and no cure. She just looked at me. Just stared actually. I’m not sure she was breathing. I could see in her eyes that she knew where this conversation was going. I told her that Hospice was now coming in several times a week. Tears started rolling down her cheeks. She started to speak. Her first words were “Why you? If it’s so rare, why did you have to get it?”
“Uh uh uh, no crying allowed. It’s going to be okay. I’m going to be okay,” I told her. She asked the usual questions, was it a gene I got from her or my father, did I think that this thing or that thing caused it. Was there a vitamin that could stop the atrophy of my muscles. No, no and no. Nothing anyone did, nothing anyone can do. My brother Paul, not knowing exactly how to handle this news, started making jokes of the situation, but quickly had to excuse himself to leave the room.
We didn’t dwell on all the horrible details of the disease, but when it was time to take my medications, Susan was very careful to explain in detail what symptom each medication was used for. That brought a few questions regarding my medical care. I told her that I didn’t want to hear questions about treatments or did I try this or my friend said you should try that. I assured her I have the best doctors and that they are doing everything they can to make this journey as smooth as possible for me.
I also went on to tell her that I had made all my decisions. I have a DNR and that no one should blame Susan for the path I choose to take. I told her that Susan was against the DNR and wanted me to have the feeding tube, that it was my decision not to go that route. I also told her that I had made my decision as to the distribution of my belongings and it was not up for discussion. She started busying herself cleaning, so I knew she was done with the conversation. We left the doors of communication open, but changed the subject to the events of the following day.
Thursday morning Susan and I got up before the others and went to McDonald’s so I could get coffee and we could talk. We then stopped at the store to get bagels and head back to the house. Once breakfast was over, the girls decided they were going to do some shopping, so Paul and I decided to go crabbing.

Paul had his favorite spot to go, although he said it had been ages since he had actually caught anything. We got all the supplies together and off we went. It was a very hot and humid day, heat index was close to 110, but since I don’t feel heat or cold, I was fine, but Paul was sweating like a fountain. I was the lookout for the crabs, and Paul would snatch them up with the net. Within about 2 hours we had caught four big ones. There was this one that kept coming by taunting us, but was too fast to catch. Just as we were getting ready to pack it up, the crab came by again. I was determined to get him, and in the process of diving after him, I fell and cut my leg up pretty bad on a rock. I knew Susan was going to be mad, but that sucker didn’t get away. He was mighty tasty in the crab sauce my Mother made.
Later that evening we decided to go back to the pier and try our luck again, but this time Susan, Angelina and Mom joined us. We didn’t really have any luck with the crabs, Paul caught two, but we were able to enjoy the beautiful sunset and even do a silly O-H-I-O for Angelina.
So the trip went better than I thought. My mom was a trooper. She said she was so happy that I came to tell her. She will read thorough the articles and the comments from all of you that are supporting me. I think that will make it easier for her to understand my journey and how I have chosen to take to get there.
I want to thank each and everyone one of you that submitted replies and emails. I know they will give her comfort knowing that each of you thought about her and understood how she, as a Mother would feel about this subject. I know she will also be so excited that there are so many people that care and are praying for me. As Bev Clayton would say, “Let’s turn the M in MSA into a Miracle.”

MSA Decisions: A Visit To Mom.

Sat, 30 Jul 2011 10:42:48 +0200

July 30, 2011 Posted by Frank Cervone frank@hollywoodrepublican.net

Dear Readers,
Since the beginning of my journey with Multiple System Atrophy I have been faced with making many decisions. First I needed to decide if I was going to fight or just sit back and wait for it to take my life. I had to decide what type of healthcare I wanted to receive. I had to take a good look at my bucket list and prioritize the items on it.
I’ve had to make decisions regarding medical procedures and which physicians I wanted to provide my care. I have had to make decisions on even little things like what foods to eat. Do I follow the doctor’s instructions and stay with soft foods, or try to eat normally and deal with the consequences of the struggle and pain I have trying to swallow normal food?
I made a choice to commit my life to God and rely on him to walk me through this. Like the poem about walking in the sand with two sets of footprints. When there is only one set, I know he is carrying me. I made my end of life decisions so Susan would not have to face those decisions. I decided to become a spokesperson for MSA and make my journey public so I could bring awareness to MSA and help promote research for a cure.
People make decisions or choices everyday and with every action there is a reaction. I have to weigh every decision I make regarding my disease before taking any action because it will now affect everyone around me. If I decide not to take a certain medication, there are side effects. If I take certain medications, there are side effects. If I meet someone new, and share the fact I have a terminal disease, I have to then deal with the questions and emotions of that person who is just learned a new fact about me.
I have been very open about my disease with everyone around me because at any time, they could, without notice, witness the horrible symptoms that plague those suffering with MSA. On the other hand, I have not completely disclosed my condition to those that don’t interact with me on a regular basis or live near me. I have not shared this journey with my Mother.
My mother is 83 years old. She lives in Florida. She appears in relatively good health and my brother lives with her. I see her every couple of years. The last time was Christmas 2009. She knows I have health problems, she does not know I am dying. She calls me almost daily, probably because Mom’s have that intuition that they know something is wrong even if their child doesn’t say anything. She knows I’ve had multiple surgeries. She knows I’ve lost a lot of weight. She does not know I have MSA or that I am under the care of Hospice.
I am going to visit her next week. It will be a surprise for her. I had made a decision early in my diagnosis that I was not going to tell her about my journey with MSA. I really saw no point in it. She is elderly and I didn’t want to put the strain on her that she was losing a son. I think I also thought she would pass on before me so she wouldn’t have to know. When I would tell people of my decision, there was mixed reactions. Some thought I should, others were not so sure.
A couple of weeks ago, about the time Hospice got involved I decided I needed to tell her. Let her know all the details of this disease. After all, I’m now in Hospice. There’s a good chance that she will outlive me. So I made the flight reservations. Susan and Angelina will go with me. I will need their moral support. She should know right? Or maybe I just need to see my Mom.
But, do I really want to cause her this pain? She lost a son about forty years ago. My brothers Robert, (10), Paul, (12) and I (8) were walking down Carmen Avenue going to the Carvel Ice Cream store when two cars started drag racing. Robert pushed me out of the way and took full impact of the car. He was drug over 200 feet underneath the car before it came to a stop. The driver got out of the car, took a look at what he had done, got in his car and sped away. He was never caught. You cannot imagine the pain my mother must have felt losing her son. Our family was never the same. I guess when a tragedy like this occurs, everyone plays the blame game. It is always someone’s fault. My family never accepted that it just happened and maybe no one, except the driver of that car was at fault.
Even when my Mother came for Christmas in 2009 there were pointed questions. Questions like, have they tested you for poisons? What medications are you on? Are you sure that’s what you’re being given? Have they checked your blood for toxins? Questions that appeared to make it Susan or Angelina’s fault I was sick.
So here we are again. That ugly truth monster has reared its head and I need to deal with it again. Do I or do I not tell my mother the truth? Do I tell her so she has the opportunity to do and say the things a mother needs to do or do I spare her the pain now and just let her get a phone call that I am gone?
You all have been so great and supportive and walking along with me on my journey. I would like some advice from you. What do you think I should do? If you have suffered or are suffering from a terminal disease, what did you do? How did you tell your loved ones? Did you decide not to tell them? Are you a family member that has someone that is dying? How did they tell you, or if they didn’t, are you glad or do you feel that you missed something by not knowing. Please share your experiences with me.
Please respond with your comments at the end of this article. Hollywood Republican has a place for you to respond. If you don’t want your response public, you may email me at Beenserved@aol.com.
We will be leaving on Wednesday, August 3rd. Please submit your responses before then. I am really torn on how to handle this situation and as always, ready to listen to your ideas and suggestions.
Thanks, Frank

“JiePie Award” ™ 2011

Mon, 18 Jul 2011 13:10:31 +0200

WORLD MSA DAY, October 3, 2011 and awarding of the “JiePie Award”
FOR IMMEDIATE RELEASE: “JiePie Award” Press Release:

The “JiePie Award”
This award, named after the inspiring founder of MSA AMS.be and MSA-BeNeLux.org, will be presented at the annual World MSA day, on October 3, to a person who writes a winning article, theses or a study on MSA.

The award aims to promote research and provide information on MSA and Parkinsonism or Parkinson+.

It was JiePie's aspiration that more research would be done to find a treatment and a cure for this still incurable disease.

This award is a recognition to JiePie's tireless efforts, his courage and deep faith that the cause and a cure for MSA will ultimately be found. In addition it is to act as an encouragement to all who wish to explore the still unknown world of MSA.

Are nominated:

• Perceptuele en akoestische analyse van prosodie bij patiënten met de ziekte van Parkinson, multisysteematrofie en progressieve supranucleaire palsy - Scriptie voorgedragen tot het behalen van de graad van master in de logopedische en audiologische wetenschappen UZ Gent.
Kelly Van Landeghem uit Stekene

• Zorgbehoefte bij de Progressieve Supranucleaire Paralyse-patiënt. - Masterproef ter verkrijging van het diploma van master in de geneeskunde of (arts) Academiejaar 2010-2011 UZA
Lien De Vil uit Boom & Isabel Poppe uit Burcht

• Waarde van Raclopride-PET in de Differentiële Diagnose van de Ziekte van Parkinson en Multipele Systeematrofie
Dr. Kristien Clerinx, GSO Neurologie, UZ Gasthuisberg Leuven

Data for:
Belgian event: September 30th (details tbc) UZA Antwerpen

Sponsored by Lundbeck,
Lundbeck n.v./s.a. avenue Molière laan 225 1050 Brussels  Belgium

RAF Corporal wins groundbreaking court decision after being exposed to toxins by the MoD

Thu, 7 Jul 2011 23:58:57 +0200

Lethal cocktail of solvents
An RAF Corporal who was left with a devastating degenerative neurological condition after he was exposed to dangerous toxins while working in ‘Victorian conditions’ has won a groundbreaking decision after the Court of Appeal dismissed the Ministry of Defence’s case.  Shaun Wood, 52, from Northallerton, was diagnosed with Multiple System Atrophy-P (MSAP), a Parkinsonian condition that affects the nervous system, after exposure to a lethal cocktail of solvents as a painter and finisher at RAF sites across the world.   There is no cure for the condition, which has left him needing to use a wheelchair.
Today (Thursday, July 7, 2011) the Court of Appeal dismissed an appeal by the MoD bringing to an end Mr Wood’s 18-year-battle for justice. It ruled that on the evidence presented – which was not rebutted by the MoD – that there was in legal terms a “probable connection” between heavy solvent exposure and neurological damage.
The decision paves the way for other people who develop neurological conditions in similar circumstances to pursue compensation.
Thompsons Solicitors have been behind me since 2007
Mr Wood said: “It has been a very long fight to get to this point from the day I was told back in the 1990s that I wasn’t entitled to legal aid. That was just the start. I never accepted that I wouldn’t be able to get justice and Thompsons Solicitors have been behind me since 2007 and enabled me to fight this to the end.  “I come from a military family and making the decision to pursue compensation went against my instincts but when I die my wife will be left without an income because my war pension will be taken away and I have always wanted to ensure that she is provided for in the future.”   He added: “I have lived with this condition for 18 years now and try not to think too far ahead, we take each day at a time. I was once an extremely fit and active person and there are times when I get frustrated at the amount of time I waste housebound during the colder months.
“In particular these last two years have been difficult as my walking has become more difficult and my wife Jan has been recovering from breast cancer. We also had the added strain of this appeal on our shoulders.
“We have no idea what the compensation will mean when we finally receive it but I have no doubt it will help to make our every day decisions easier for the entire family.”
Protection provided by the MoD was completely inadequate
Representing Mr Wood, Andrew McDonald from Thompsons Solicitors added: “After 18 years Mr Wood has finally been vindicated.
“This is a groundbreaking decision which is a result of a tireless legal battle by Mr Wood and Thompsons Solicitors.
“This is the first time there has been any adjudication of the link between organic solvents and this kind of neurological damage. We expect that this decision could be used favourably for other claimants who have developed neurological conditions in similar circumstances.”
“The High Court found the protection provided by the MoD was completely inadequate and the exposure levels were massive, especially in the intensive work leading to the first Gulf War in the early 1990s. Now the Court of Appeal has unanimously dismissed the MoD’s case for appeal.”
The case will now be transferred to Middlesbrough High Court where damages will be awarded.
Job involved painting aircraft and motor vehicles
Shaun, whose father served as a Lancaster Bomber Navigator in the Second World War, joined the military from school in 1975 signing up as a painter and finisher in the belief it would provide him with an interesting career, which would lead onto further employment opportunities after he was discharged.  He worked in RAF sites across the UK and abroad, including RAF Abingdon, RAF Bruggen and RAF Leeming.  Mr Wood’s job involved painting aircraft and motor vehicles and through that exposure to solvents, now banned by the European Union for consumer use as known carcinogens (including trichloroethylene and dichloromethane), for sometimes in excess of 12 hours a day - particularly in the lead up to the first Gulf War - he contracted his illness.   At the time he had no idea the exposure to the cocktail of chemicals would damage his health in the long term.   Shaun, who is married with three sons, two of whom served in the RAF, was medically discharged in 1995, two years after his Parkinson’s was diagnosed. After a few years his Parkinson’s had deteriorated and with the examinations by many neurologists the diagnosis of MSA with predominant Parkinsonism was given.
Colleague who did the same work was also diagnosed with Parkinson’s disease
Shaun said “It was always a case of Parkinsonism from the start, but being so young, it was difficult to make a clear diagnosis. It took a further seven years before MSA-P was clearly diagnosed”.
One of his RAF colleagues who did the same work was also diagnosed with Parkinson’s disease at a similarly young age as Mr Wood.
Convinced that his diagnosis was work related Mr Wood enquired about receiving legal aid to pursue a claim for compensation but was unable to get legal representation.   In 2007, when another RAF painter successfully claimed compensation in Scotland, he contacted Thompsons Solicitors who took on his case.  The Ministry of Defence (MoD) challenged his claim arguing it should have been brought within three years of his diagnosis but their objection was dismissed at an earlier hearing.
Exposure to toxins during the first Gulf War
At a five day hearing in Middlesbrough in April 2010 the level of Shaun’s exposure to toxins during the first Gulf War was shown to have been between ten and twenty times the recommended maximum exposure levels.   The Ministry of Defence accepted it had breached its duty of care in exposing Shaun to the toxins and by failing to provide him with any adequate protective equipment or ventilation but tried to argue that this exposure hadn’t caused Shaun’s condition.   On 5 May 2010 the trial judge found that the toxins Shaun was exposed to, particularly at the dangerously high levels, had caused the majority of the symptoms from which he now suffers.
Soon after the High Court decision the MoD entered its appeal with the Court of Appeal, which was heard in March.
How to start a claim for compensation against the Ministry of Defence
Thompsons Solicitors are experts in all matters relating to personal injury claims for Military Personnel. We will be able to advise you whether or not you have a valid claim for compensation. Our specialist personal injury lawyers will be happy to talk you through the process of making a claim in plain English and will be happy to answer any questions or queries you may have. If you do have a valid personal injury compensation claim and you decide to instruct Thompsons Solicitors to deal with the matter for you, we will recover our legal fees from the person responsible for your injury, ensuring that the entire procedure is cost-free for you. Telephone us now on 08000 224 224 or complete one of our online personal injury compensation claim forms.
There are strict time limits in place to make any personal injury claim. For further information, contact us or visit our Questions Answered page.
http://www.thompsons.law.co.uk/personal-injury/groundbreaking-court-decision-exposed-toxins.htm

Lyme-Associated Parkinsonism: A Neuropathologic Case Study and Review of the Literature

Wed, 29 Jun 2011 11:12:48 +0200

Archives of Pathology and Laboratory Medicine: Vol. 127, No. 9, pp. 1204-1206.
28 June 2011

Lyme-Associated Parkinsonism: A Neuropathologic Case Study and Review of the Literature David S. Cassarino, MD, PhD,a Martha M. Quezado, MD,a Nitya R. Ghatak, MD,a and Paul H. Duray, MDa

From the Laboratory of Pathology, National Cancer Institute, National Institutes of Health, Bethesda, Md (Drs Cassarino, Quezado, and Duray); and the Departments of Pathology and Neuropathology, Virginia Commonwealth University, Richmond (Dr Ghatak)

Accepted April 11, 2003

Neurological complications of Lyme disease include meningitis, encephalitis, dementia, and, rarely, parkinsonism. We present a case of striatonigral degeneration, a form of multiple system atrophy, in Lyme-associated parkinsonism. A 63-year-old man presented with erythema migrans rash, joint pains, and tremors. Serum and cerebrospinal fluid antibodies and polymerase chain reaction for Borrelia burgdorferi were positive. Clinical parkinsonism was diagnosed by several neurologists. Despite treatment, the patient continued to decline, with progressive disability, cognitive dysfunction, rigidity, and pulmonary failure. At autopsy, the brain showed mild basal ganglia atrophy and substantia nigra depigmentation, with extensive striatal and substantia nigral neuronal loss and astrogliosis. No Lewy bodies were identified; however, ubiquitin-positive glial cytoplasmic inclusions were identified in striatal and nigral oligodendroglia. There were no perivascular or meningeal infiltrates, the classic findings of neuroborreliosis. To our knowledge, this is the first report of striatonigral degeneration in a patient with B burgdorferi infection of the central nervous system and clinical Lyme-associated parkinsonism.

Lyme disease is an infection caused by Borrelia burgdorferi, a spirochete transmitted by Ixodes ticks in the United States. Patients often initially present with the classic erythema migrans rash, a macular, erythematous, circular area with central clearing that expands around the site of the tick bite. The rash usually begins within 3 to 30 days after the bite, but is only found in about 60% of patients.1 Patients with long-standing Lyme disease may develop myocarditis, oligoarthritis of large joints, and central nervous system involvement (typically meningitis, encephalitis, and cranial neuropathy, and, rarely, basal ganglia and cognitive dysfunction) in the tertiary phase of the disease. There have also been reported cases of patients with Lyme disease developing clinical parkinsonism.2-6 We describe what to our knowledge is the first such case with autopsy follow-up.

Patients with Lyme meningitis usually show increased numbers of lymphocytes and plasma cells in the pia and arachnoid, with some atypical lymphocytes.1 In Lyme encephalitis, there is edema, microglial activation, and intraparenchymal lymphoplasmacytic infiltrates in a predominantly perivascular distribution.1 These findings were lacking in the current case. Instead, the brain showed neuronal loss, gliosis, and glial cytoplasmic inclusions in the striatum and substantia nigra, leading to the diagnosis of striatonigral degeneration (SND).

Striatonigral degeneration is now recognized to be a subtype of multiple system atrophy (MSA), a relatively uncommon neurodegenerative disease characterized by neuronal loss and astrocytosis of the basal ganglia and substantia nigra, with characteristic ubiquitin-positive glial cytoplasmic inclusions.7 These inclusions contain -synuclein, which can be identified immunohistochemically in glial cells. To our knowledge, the presence of glial cytoplasmic inclusions and -synuclein has not been previously reported in the brains of patients with Lyme disease.

REPORT OF A CASE

The patient was a previously healthy, 63-year-old white man who presented with an erythema migrans rash on his left inner thigh in June 1995. He developed diffuse musculoskeletal pain, swelling of the left knee, tremor of the left hand, and pain in the left shoulder and arm during the subsequent year. In June 1996, the diagnosis of Lyme disease was made based on a serum Western blot showing B burgdorferi-specific immunoglobulin (Ig) G bands. The patient's musculoskeletal pains and hand tremor worsened during the next few months, with loss of function. He was treated with 3 weeks of intravenous (IV) ceftriaxone without improvement in August 1996. A magnetic resonance imaging scan of the head and neck was reportedly normal in February 1997. He resumed antibiotic therapy with 2 weeks of IV ceftriaxone and then 42 days of IV cefotaxime sodium, with little improvement in his condition. In May 1997, a neurology consult was obtained, at which time a spinal tap cerebrospinal fluid (CSF) was found to be positive by enzyme-linked immunosorbent assay (ELISA) for B burgdorferi-specific IgG. Neurological examination documented parkinsonism, which was attributed to Lyme neuroborreliosis. Pharmacological treatment was initiated, without apparent benefit.

By July 1998, the patient had lost 20 kg and had developed symptoms, including chronic fatigue, tremors, and neck and bilateral hand pain; his movements were stiff and painful. He also developed cogwheel rigidity in August 1998. Due to continued clinical deterioration, he was started on oral antibiotics, including clarithromycin, ciprofloxacin, and hydroxychloroquine. His tremors seemed to improve after treatment; however, his other symptoms continued unabated. Western blots for B burgdorferi-specific IgM (30, 34, 41, and 93 kd) and IgG (30, 39, 41, 58, 66, and 93 kd) antibodies were positive in November 1999. Despite continued antibiotic treatments, the patient's movement disorder continued to progress. By May 2000, he exhibited decreased memory, incontinence, drooling, and inability to ambulate independently or to care for himself. Cerebrospinal fluid and blood polymerase chain reaction (PCR) tests at that time for Borrelia species were positive, and PCR for Babesia species was negative. A red blood cell culture showed classic spirochetes in his red cells. Oral multiagent antibiotic therapy was continued.

In December 2000, the patient was admitted to the hospital for aspiration pneumonia and was treated with antibiotics and parenteral nutrition. He was readmitted in January 2001 for another episode of aspiration pneumonia. He had a sputum culture that was positive for Staphylococcus aureus, and he was treated with IV vancomycin. In February 2001, a sputum culture was reportedly positive for B burgdorferi. A repeat serum Western blot for Borrelia IgM and IgG was positive, and PCR for Babesia organisms was also positive. Despite continued antibiotic treatments (IV vancomycin, azithromycin, and atovaquone), the patient's neurological status continued to decline, and he finally succumbed to infection and respiratory failure in April 2001. A full autopsy was performed.

PATHOLOGIC FINDINGS

Gross examination revealed few significant findings. Externally, there were multiple bruises and IV marks, and decubital ulcers over the sacrum. The chest cavities contained fluid and there were bilateral pleural effusions. The brain and spinal cord were externally unremarkable; on sectioning, the basal ganglia showed mild atrophy bilaterally (Figure 1 ), with greater changes on the left, and the substantia nigra showed depigmentation. The cerebellum also appeared to show mild atrophy.

Microscopic examination of the heart showed scattered lymphocytes and plasma cells, with areas of mild fibrosis, suggesting possible remote myocarditis. No significant inflammation was identified in any other organs. The brain showed extensive neuronal loss and severe astrogliosis in the striatum (Figure 2 ) and substantia nigra (Figure 3 ). Other brain regions were unaffected. No Lewy bodies were identified; however, there were ubiquitin-positive glial cytoplasmic inclusions in scattered oligodendroglia in the striatum (Figure 4 ) and substantia nigra, but not in the pons (including the olivary nuclei) or cerebellum. These glial cytoplasmic inclusions also stained positively with -synuclein immunohistochemistry (Figure 5 ). Premortem Western blot and ELISA studies showed positive reactions for Borrelia-specific IgM and IgG antibodies in both serum and CSF samples (Tables 1 and 2 ). Polymerase chain reaction analysis for Borrelia-specific sequences in the substantia nigra and basal ganglia was performed; however, the results were not able to be confirmed on the postmortem tissue.

COMMENT

To the best of our knowledge, this report describes the first case of parkinsonism arising in association with Lyme disease to come to autopsy. Histological study of the brain displayed characteristic morphologic changes of SND, a variant of MSA. The patient's diagnosis of Lyme disease was well documented, confirmed by both serum and CSF ELISA, Western blots, and premortem PCR studies. The patient developed signs and symptoms of MSA after his presentation with the erythema migrans rash, and there was no prior history of neurologic dysfunction. Although it cannot be excluded that the SND could have developed independent of his Lyme disease, the temporal association with tertiary Lyme disease, the high titer of Borrelia antibodies in his CSF, and premortem PCR for B burgdorferi-specific sequences in the CSF favor an association. The fact that the classic inflammatory changes associated with Lyme disease were absent may indicate an atypical central nervous system infection in this patient, or merely that the infection and inflammation had resolved by the time of death (which occurred 5 years after infection and after multiple courses of antibiotics). In most cases, the organisms cannot be identified in histologic sections.1,6

Regardless of whether the infection had resolved by the time of death, we hypothesize that it was sufficient to cause ongoing neuronal loss and astrogliosis leading to SND. Therefore, the negative studies for organisms in the postmortem tissue may reflect either the absence of organisms or the persistence of low numbers of spirochetes and false-negative findings. Overall, we believe that the SND and resulting parkinsonism in this case might be related to direct infection by Borrelia organisms, or to the immune response against the organisms, and these findings are therefore of particular interest because the etiology of SND and MSA is unknown.

Clinical diagnosis of MSA is based on diagnostic criteria, including parkinsonism with poor or transient response to L-dopa therapy. Patients often develop progressive bulbar dysfunction leading to dysphagia and laryngeal stridor, eventually predisposing to aspiration pneumonia.7 Our patient's parkinsonism was resistant to traditional medications, and he developed classic signs of parkinsonism as well as dysphagia, consistent with the clinical course of MSA. In a previous report of Lyme-associated extrapyramidal features in 5 patients,5 all of the patients exhibited akinesia, pains, and rigidity, similar to our patient, although only 2 developed tremors. Four of the 5 patients also developed bulbar dysfunction, a characteristic finding in MSA. Although none of these patients came to autopsy, and therefore could not be definitively diagnosed with MSA, the clinical findings were consistent with this conclusion and were generally similar to findings in our case. One significant difference was that their patients responded to anti-Parkinson's medications, which is unusual in MSA, and they also improved on antibiotics. This dissimilarity may indicate a different underlying pathology compared to the present case, in which there was little or no improvement with anti-Parkinson's drugs and antibiotics. Alternatively, as our patient did not receive antibiotics until 14 months after initial infection, he may have suffered irreversible neuronal damage by the time treatment was initiated.

Autopsy brain studies on patients with Lyme disease are limited to single case reports or small case series. In addition to meningoencephalitis, multiple other neuropathologic findings have been reported. One patient was found to have rhomboencephalitis on autopsy, with microgliosis and obliterative inflammatory vasculopathy associated with ischemic infarcts.2 Another case showed multifocal inflammation, neuronal cell loss, demyelination, and astrocytosis in the cortex, thalamus, cerebellum, and spinal cord.3 Bertrand et al4 reported 3 cases, 1 of which showed cortical involvement, and all 3 of which showed cerebral and cerebellar white matter changes, with associated lymphocytic infiltrates, microglial activation, spongiform changes, diffuse astrogliosis, and demyelination. To date, however, no neuropathologic findings have been reported in the substantia nigra or basal ganglia. Clinically, Kohlhepp et al5 described 5 patients with Lyme disease with extrapyramidal symptoms and documented CSF infection by B burgdorferi. Interestingly, treatment of the patients with high-dose penicillin led to both normalization of their CSF and improvement in their extrapyramidal symptoms.5

In primates infected with B burgdorferi, brain autopsy and PCR analysis showed organisms in the leptomeninges, nerve roots, and dorsal root ganglia, but not in the brainstem, cerebellum, or basal ganglia.6 Histologic and immunohistochemical studies with polyclonal anti-B burgdorferi antibodies confirmed the PCR results in this study.6

In summary, this is the first published report of SND or MSA, with characteristic ubiquitin and -synuclein-positive inclusions, in a patient with documented B burgdorferi infection of the central nervous system and clinically diagnosed Lyme-associated parkinsonism. Therefore, this case raises the possibility of a causal link between B burgdorferi infection of the central nervous system and SND.

Acknowledgments

We thank Robert G. Beitman, MD, and Gregory P. Bach, DO, for submitting this fascinating case to us.

Less than 2 weeks to go – Exciting

Sun, 26 Jun 2011 10:10:45 +0200

Posted on June 26, 2011 by jandjskelton
http://skeltons2overseastrip.wordpress.com/2011/06/26/less-than-2-weeks-to-go-exciting/

Anna has helped me set this up – so all set to go on July 8th. We fly to London first, stay for a few days with an old friend of mine before going to the Pyrenees to watch Tour De France. On July 17th we fly to Kampala, Uganda for the first part of the “mission” trip. From August 19th we will be in Germany with Steiger for 3 weeks.
We’ve set up this blog so that we can keep you updated with our news. Thank you to all of you who have been so interested in our trip and we value you that so much.
While we are away, we will need your prayers for protection and safety and that God will really use us wherever we are. I want to really use this trip as an opportunity to learn not to be anxious and to trust God! So I would appreciate your prayer for this also.
We would love to hear from you as well, so please keep the emails coming to 2skeltons@gmail.com
Bless you and thanks. We will miss you all.

Living with death

Sun, 19 Jun 2011 10:51:51 +0200

http://www.guardian.co.uk/lifeandstyle/2011/jun/19/living-death-terminal-illness-cancer

The Observer, Sunday 19 June 2011

What's it like to know that you are dying? Four people share their experiences of living with a terminal illness – from a 25-year-old who has learned to love life, to a biker who's angry as hell

Peter White, 57, has Multiple System Atrophy, a neurological disorder. He lives in Sheffield with his wife Josie
I was an electrician and hardly missed a day of work in 40 years. Then, in 2005, I started losing my balance so Josie, my wife, suggested I see a doctor. It took about a year to get diagnosed with Multiple System Atrophy (MSA). I never felt sorry for myself: if the numbers of people getting ill need to be kept up, then I would rather it was me than any of my family.
As a result of the MSA I've developed another condition called cataplexy, which is triggered by strong emotions – laughter in my case. Once I start laughing I can't stop, and that triggers a seizure. It's very difficult to keep my emotions on an even keel. Josie says I've turned into a miserable sod.
There are things that bother me about having this disease – the fact that there's no cure being one. The idea of losing the ability to speak is hard. Josie and I are writing cards out so I can hold them up to communicate when the time comes. I've been in a wheelchair for about a year now. I can walk with a frame, but it's getting harder.
I have never believed in an afterlife, but Josie and my youngest daughter are both practising Christians and I've been tilting towards their side of things recently. I'm also finding peace in art. I spend most of my time at the hospice painting ties and scarves. I paint a lot of catfish because fishing is something I enjoy and can't do any more. If I could do one more thing in life, I'd love to catch a really big catfish with my grandson.
I feel lucky in that I've had time to prepare. The reality is, we're all going to die – it's just I know of what and that my time is sooner rather than later. There won't be any hymns at my funeral. Hopefully, mine will be the last one of the day and I'll go out to Eric Clapton's "Layla" – turned up really, really loud.

Victor Fournere, 65, has prostate cancer and was told in 2006 that he had five years to live. He lives in Essex
I thought I had cystitis so I went to the doctor and asked for antibiotics. It went away for three weeks and then came back, so the doctor decided to do a blood test. That afternoon there was a knock at my door. It was my doctor telling me I had prostate cancer and that I needed to go to the hospital.
I wanted to hit someone when I was first diagnosed. I was really, really angry. That hasn't gone away – I just know how to control it now. The slightest twinge and I wonder if that's it, if I'm dying right there and then. The doctors said I have a really aggressive type of cancer. They've said, "It'll kill you. You're going to die from it." I was given a maximum of five years – and I'm now in my fifth year.
Telling my friends was straightforward. I'm not ashamed of it because it's not my fault. I've got no family, so my friends are the only people I have had to tell. If I'm having a good day I'll go to the bike club to see them. I've been a biker since my late teens – bike rallies, camping weekends. It's a big part of my life. My friends try to keep it light and breezy. They say things like: "Don't die yet, we're coming over for a coffee."
The second I found out I had cancer I gave up drinking. I don't think I have any quality of life any more – well, it's not the type of life I want to lead. My life was extraordinary before; it was very different to the norm. Now it's all about "being careful". I take six tablets every morning. They make me feel sick and they've bloated me out. I only had a short burst of chemo. It's unpleasant – your mouth and tongue split, your taste buds go – I couldn't taste the difference between a jam sandwich and a pork pie. The doctors told me that it wasn't working so there was no point in having any more – there was "nothing more they could do for me". That sentence still goes round and round in my head.
Mick, my brother-in-law, is the only family I have. He was married to my foster sister. He's my carer and a real support. Once a week I visit the Fair Havens Hospice in Essex. It's where I can release the pressure valve – talk to nurses and discuss any problems. It's lovely to know that there is somewhere I can go when it all gets too much.
The worst is at night when I am in bed. Lying there on my own I start thinking about funerals and I get the horrors. I'll be sitting watching telly and suddenly remember that I'm dying. There are moments where my brain swirls and I think of things I've done and people I've hurt in the past. It's a suffocating feeling, all jumbled thoughts – it's 60 years of memories at once. I've found a cure though: I just get in the bath. That's the only thing that relaxes me now.
I worked all my life and retired at 60, then I get told at 61 that I have a few years left and that I'm going to die. I'm pissed off. I wouldn't want anybody to upset me,, five years of hate would all go into that one person – that's part of the reason I don't drink. Losing my independence really gets to me. I worked in demolition all my life and all of a sudden I can't even paint a wall.
I want to die at home. I have signed a contract saying that no one can take me out of my house and that Mick has the final decision to bring me to the hospice to die if it all gets too much. My funeral is sorted. Margaret, the vicar at the hospice, will be conducting it. She knows me and it feels right. She's not just going to be saying what someone else has told her to say. In a funny way, I've always believed in God. I don't go to church or anything, but my mum taught me that God is everywhere – he's even in my house.
I've put together a CD of the music I'd like played. It starts with the Biker's Prayer, followed by "I'm Not Alone" by Boney M and then I'd like to go out to "YMCA" by the Village People – that's an in-joke between me and my mates. It'll be the biggest biker funeral in a long time – I'm friends with loads of other clubs. I imagine there will be one hearse for me and the rest will be bikes. I'd like them to remember me and celebrate my life, too.
If I had one wish it'd be to see next Christmas. It would be nice to have more time. I don't feel ready to go. I've been in bands and on the telly. I've built my bikes. It's not fair that I have to go so soon. I value life too much. I've lived enough for two lives, but I'd like a third.
Holly Webber, 25, has cancer and lives with her boyfriend and family. She hopes to live for another 20 months
I was 19 and at Brighton University when it started. I had a lot of stomach pain and was constantly bloated and constipated. I had symptoms for four years and saw six different GPs while I was at uni – all of them said I had irritable bowel syndrome. By the time I graduated in 2009, the pain was worse. I remember saying to my dad one morning that something wasn't right – I'd been up all night passing blood. He said that he'd do whatever I wanted to get somebody to take it seriously. I re-registered with our family GP who referred me to a private specialist in order to speed things up. He sent me for a colonoscopy. I'd never been in hospital before and didn't know what to expect but I was relieved afterwards because it felt like things were finally happening.
The specialist asked me to come back the next day. I spent that evening panicking, but it never crossed my mind it would be cancer. He said he'd found a large growth in my bowel, which had formed from a "polyp". There was never a mention of me having the C-word then, but to ensure that the growth and polyps in my bowel didn't become cancerous in the future (which I was told was likely), my specialist suggested surgery to remove my entire colon.
It took me a week to stop crying because I was so scared. The specialist suggested a CT scan to make sure everything was in order for surgery and this scan revealed growths on my liver. I was referred to a liver specialist who carried out an MRI scan and said: "I think we need to try some chemotherapy," which was enough for me to understand what was happening to me. It was cancer and it had spread from bowel to liver.
In the first week of July 2010, I had another CT scan which showed all the lesions on the liver and bowel had shrunk considerably. I was so relieved. Everything had been worth it. I'd had 25 growths on my liver in all. Following the success of chemo, the surgeons performed a liver resection and removed 70% of my liver. Three months later I had my entire colon removed. The care I received during these difficult months was incredible.
But I was told at the beginning of this year that the cancer had returned to my liver and spread to both my lungs. Statistically, I should have another 16-20 months if I have more chemo, which I'll start soon. This next round will make me lose my hair, so it just feels like another huge mountain to climb and something else in my physical appearance that's going to get knocked. I have scarring all over my body and an ileostomy bag attached to my stomach that I change every day – that in itself takes a lot of mental strength. I spend so long carefully choosing clothes to cover things up.
I have a lot of support – an amazing family, loads of friends and my boyfriend, who lives with me and my family. My local hospice, the Phyllis Tuckwell Hospice, has been great. One of my best friends, who is based in Taiwan, quit her job to come and live with us for a couple of months to support me. I've gained a perspective on life that is a gift in all its rawness. I'm really quite grateful for that even though the circumstances are awful.
I've tried to launch myself into helping others. If I can make people see things about life in a different light, then that's really quite special. In the past, I never had faith, but this illness has made me more spiritual. I feel much more connected. Everything is just more beautiful to me now, it's much more valuable. I've always been passionate about the environment and nature; now I feel that more than ever.
What's cruel about this illness is that I've been given a time limit. Life is so precious and we all believe we're invincible, but I know what's happening to my body. Somebody asked me recently how I cope with despair, and the only answer that I could come up with is that what keeps me going is the hope that everything will somehow be OK. I've been told I have a terminal illness, and I get that, but if I didn't wake up every morning hopeful, then I wouldn't get out of bed, get dressed, eat or breathe. What's anyone without hope?
Sometimes I feel like I'm on another planet looking in on this one. I can't relate to people stressing about work or getting the Tube. People are so wound up, but it's such a waste of time and energy. Chill out! I hope that by reading this, someone out there will take a second to think, "I'm glad that's not me. Maybe I should worry less about the things that don't really matter."
Help the Hospices is the charity for hospice care, representing and supporting local hospices. For more information, go to helpthehospices.org.uk
Diagnosed with Motor Neurone Disease in 2000, Sarah Ezekiel, 42, was told she had three to five years to live
When I was pregnant with my son, I noticed that the index finger on my left hand was slightly bent and my speech was slower, especially at night. I thought I'd had a mild stroke or that my baby was lying on a nerve. My doctor referred me to a neurologist, who I think knew immediately that I had Motor Neurone Disease (MND).
I'll never forget the day I was diagnosed. I went to the doctor's with my husband, but he got fed up waiting so left me to receive my diagnosis alone. My neurologist didn't present MND in a negative way or give me a prognosis (it's three to five years), so I didn't understand the enormity of it. But the disease progressed rapidly once my son Eric (pictured below) was born. Within one year I was unable to use my hands. It was heartbreaking for me to watch carers do everything for my daughter and son. I want to hug and kiss them, but I can't. The worst physical aspect was the loss of speech. I can communicate using computers, but I can't make phone calls or join group conversations. I miss that so much. I divorced my husband in 2004. He'd become abusive – I suppose because he was angry. We didn't talk for years, but we get on OK now. I miss being married, too.
I thought about committing suicide early on, but I'm pleased I didn't as I'd have missed some wonderful experiences. Seeing my children grow up is by far the most rewarding reason for living. I believe I've achieved more during my time with MND than when I was well. I was in a bad place for the first few years, but in 2005 I got a laptop which I could operate with my chin. That changed everything and I started writing about my experiences. I only read negative stories about MND after I was diagnosed, so I hope I have helped other sufferers.
I thought about death all the time initially, but I rarely do now. I'm too busy getting on with life. I felt hopeless after my diagnosis, but managed to overcome that with support. I've attended my local hospice since 2001 and the staff help me with emotional and medical problems. I believe all difficulties can be solved with the right resources – I've been fortunate to find them. I suppose that I'm trying to say that however bad life appears to be, there is always hope. I feel as if I've been given a window of opportunity, not a death sentence. I'm going to make the most of it.
For information on the Motor Neurone Association, go to mndassociation.org. Their helpline, MND Connect, is on 08457 626 262

Simon Roodhouse and his new companion - MSA

Fri, 10 Jun 2011 10:10:49 +0200

http://livingwithmsa.blogspot.com/

Testing time

I was quite excited at the idea of being a day patient at the National Hospital for Neurology and Neurosurgery at Queens square in central London because I was to be accommodated in a hotel each night paid for by the hospital. I would not know which hotel it was going to be until I was registered. I also arranged to have dinner on three nights with friends to avoid sitting in my hotel bedroom on my own. So allowing myself enough time to get dressed (as it is a slow business now), I got the early direct train from Skipton to London and then a short taxi ride to Queens square where I checked in at the day patient centre. I was taken to a small room (one of several) with five tall backed arm chairs numbered consecutively mine was number 5. This was going to be my home for the next five days. There were other patients in the room. Some of them very familiar with the routine so could explain things to the newcomers like me. Many of the patients, quite young were suffering from MS and having infusions. The young man next to me, suffered from terrible headaches, almost continuously he said, and had an operation to put an implant into his brain. He had come back to have his implant readjusted. I already felt better!

I was introduced to the nurse that was responsible for the room I was in. She took my blood pressure, weight, and measured me checking I was who I was by asking me repeatedly for my date of birth and finally telling me that somebody from Prof Lees team would see me that day. So, I got my book out and settled for a long waiting game - the NHS is never in a hurry - as I watched my nurse join the others at the desk chatting and shuffling a few papers around. I have come to the conclusion that as a patient your time is inconsequential and fully at the disposal of the administration. About half an hour later she gave me two small green post-its, one with the name of the hotel I was going to stay in and the other a list of the tests I was going to have over the next few days. It did not include an autonomic nervous system test which would have to be arranged separately. There was no timetable for these tests. I was in for a noisy claustrophobic MRI scan; I had already done one at Airedale hospital which obviously wasn't good enough for the London team because they have bigger and more sophisticated machines, a 3T scanner I believed. The levadopa challenge sounded interesting but the 2 hour psychology examination to establish whether I was sane or not didn't. Two questions, stick in my mind; how many zebras are there in the Netherlands and how heavy is a pint bottle of milk? I was reassured after bursting out laughing that these were serious scientifically cleared questions! I never did understand psychology. So the day, dragged on broken up with an intermittent checking on my blood pressure and temperature. Lunch came and went a tuna mayonnaise on white bread sandwich with a banana. Eventually a doctor appeared and took me off to the consulting room, where he introduced himself as one of Prof Lees team and we went through the usual questions and tests such as being pushed backwards and my blood pressure being taken when lying down and then standing up. This always gets the doctors excited, as my blood pressure drops dramatically and I should faint but don't. He said that I would see the Prof the following afternoon. So that was it for the day, so I left to find my hotel, which was close by and rather nice.

Over the following days I completed an eye test, sleep test, urology and, physiotherapy consultations as well as the brain scan, the levadopa challenge, and the neuropsychology examination. What the tests amongst other things were trying to do is to decide whether I was Parkinsons/P Parkinsons/A or Parkinsons/C or just Parkinsons! If you fall into one of these categories, P,A or C it is MSA with dominant (P) parkinsons (movement) symptoms or (A) autonomic nervous system problems(blood pressure and swallowing) or (C) Cortico basal degeneration. It can be a combination of all three but usually one category is dominant. I might have got this completely wrong.
Rather worryingly, the sleep test is to determine whether I stop breathing when I am asleep because this happens with MSA. I was relieved to hear that I do not. Little by little the doctors were edging towards a conclusion and diagnosis at last. Later, I was told by Prof Lees that they could not be certain about my diagnosis until I was dead and could open up my brain!
It was frustrating having to repeat my story so many times to so many doctors I suspect to save them time reading my file but they still seem to take copious notes. They only seem to read the last few entries anyway and I can't help but think that the file is an insurance policy.
Another observation is the systemic movement of staff does nothing for building communication. As a patient with a disease that I have never experienced before a lot happens between consultations which could be sorted out by a telephone call or e-mail. The one stable person is a consultant but he is protected by his secretary, everything is filtered by her. I don't see why you cannot have e-mail contact. On the communication front, they are very good at providing my GP with a letter describing what they have done every time I see them. I get a copy too!
As we headed for Friday I met a member of the autonomic nervous system team who asked me what I thought the diagnosis was and I said MSA, and he nodded. That the nearest I got anything like a conclusion. They were not going to commit themselves until I had the autonomic nervous system test and a further test with the urology department, so another trip to London was in the making.

P.S. I am getting lonely writing in a vacuum. Can somebody talk to me! Tell me why you are reading this and what you find interesting about it? Are you a fellow sufferer? I know you are reading because the Stats tell me we've had over 320 hits from as far afield as India and New Zealand.

Journée Mondiale pour l'AMS, 2011

Mon, 6 Jun 2011 16:54:53 +0200

Journée Mondiale pour l'Atrophie Multisystématisée
Les associations mondiales pour l'AMS (associations médicales, associations de patients) ont fixé
Le 3 octobre 2011 Journée Mondiale pour l'AMS
Chaque année, cette date sera dédiée mondialement à l' Atrophie Multisystématisée.
Elle sera l'occasion de fixer un évènement pour chaque pays.

http://www.world-msa-day.org/

MSA Conference, Dallas, Texas, October 2011

Mon, 6 Jun 2011 16:28:54 +0200

SDS/MSA 2011 Conference

Annual Patient-Caregiver Conference Sponsored by

The SDS/MSA Support Group

Location: Dallas, Texas

Date: October 28-29 , 2011

SHERATON - DALLAS/FORT WORTH AIRPORT HOTEL
RESERVATIONS
800-345-5251
(24 hours/Central Reservation Center)
or
972-929-8400, Extensions 216 or 218
(Dallas Hotel Site Reservation Department - 9 a.m. - 5 p.m. only)
To get the room rate of 67.74€ per night plus tax you must ask for the SDS/MSA Support Group or Shy-Drager Syndrome/Multiple System Atrophy Support Group. Reservations must be made by 5PM, Central Time, October 6, 2011 to take advantage of the discounted group rate.
For more information please check our
website http://www.shy-drager.org/
or
facebook page
http://www.facebook.com/pages/Sdsmsa-Support-Group/160268974011093

---
If you require a room please contact the hotel directly. Please RSVP if you are planning to attend the conference to Vera James vjames@shy-drager.org or call toll free in USA & Canada 1-866-737-5999 leave a message if no answer and Vera will call you back.

Former director of Kennedy Space Center dies

Fri, 3 Jun 2011 16:31:26 +0200

“Former director of Kennedy Space Center dies at 91
By Blanca Gonzalez
12:14 p.m., June 3, 2011
Lee R. Scherer
Lee R. Scherer knew since childhood that he wanted to attend the U.S. Naval Academy but the future director of the Kennedy Space Center found his ultimate career path after a serious bout of seasickness while serving on a destroyer. It was then he decided to become a pilot and focus on aeronautical pursuits.
The World War II veteran spent most of his 25-year naval career in aviation and would go on to leadership positions in NASA, including serving as director of the Apollo Lunar Exploration Office and the agency’s Flight Research Center, before being appointed director of the Kennedy Space Center in 1975.
He moved to San Diego in 1983, after retiring from government service, to help General Dynamics establish a commercial launch services group.
Mr. Scherer died of multiple system atrophy May 7 at his San Diego home. He was 91.
Friends and family said he was a pioneer in the space program and enjoyed it. On assignment from the Navy to NASA headquarters in 1962, he was program manager for Lunar Orbiter, the unmanned spacecraft that photographed the moon to help map future Apollo landing sites. He retired from the Navy with the rank of captain in 1964 and remained at NASA as director of lunar programs for the Office of Space Sciences. He was director of the Apollo Lunar Exploration Office from 1967 to 1971 during the first five lunar missions.
“He was in charge of developing the Lunar Module when it was just an idea,” said friend Jeff Clough, a fellow member of the Naval Academy Alumni Association. “Lee was extremely bright and dynamic.”
Mr. Scherer received several awards for his work, including the NASA Distinguished Service Medal in 1974. “He was there at the start of the space program and he took it through critical times,” Clough said. Mr. Scherer directed the space center during the joint space venture with the Soviet Union in 1975 and during the early buildup for the Space Shuttle program.
He had a good sense of humor and liked to tell stories of his experiences, said his wife, Sheryn Scherer. One of his favorite stories was recalling the time President Jimmy Carter visited the Kennedy Space Center. Mr. Scherer showed the president around and later accompanied him on a helicopter flight to Orlando to point out the launching pad from the air and continue talking about space center operations. Carter had an engagement at Disney World and when Marine One Helicopter landed, he and First Lady Rosalyn Carter donned raincoats because a downpour had started. When Mr. Scherer started to go out, the pilot told him there was no reason he had to go out in the rain.
“He was asked if he wanted a drink so he asked for a scotch and soda,” Sheryn Scherer said. “He said there he was, sitting in the president’s seat on Marine One, drinking a scotch and soda and the worse thing was no one was there to take a picture.”
Lee Richard Scherer was born Sept. 20, 1919, in Charleston, S.C., to Sara Getsinger and Lee Scherer. He attended the University of Kentucky for a year before entering the U.S. Naval Academy. He graduated in 1942 and earned a degree in naval science. After World War II, he earned a bachelor’s degree in aeronautical engineering from the U.S. Naval Postgraduate School in 1949 and a degree from the California Institute of Technology in 1950.
During his military service, he was special assistant to the assistant secretary of the Navy for research and development from 1956 through 1959, when Polaris and ballistic missile nuclear submarines were developed.
Longtime friend John Quirk recalled Mr. Scherer as bright and competitive. The two men attended the Naval Academy and went through flight training together. “He was a good athlete and an outstanding student,” Quirk said. “He was serious (about space engineering) … He could have gone in another direction, he could have been an admiral but he wanted to work on the space program.”
In his later years, Mr. Scherer made presentations about the space program throughout San Diego.
Mr. Scherer is survived by his wife of 31 years, Sheryn of San Diego; four children from his first marriage to the late Betty Scherer, Candace Flowers of Frederick, Md., Bill Scherer of Santa Cruz, Michael Scherer of St. Louis, Mo. and Tracy Jennings of San Diego; nine grandchildren and four great-grandchildren.
Services will be held at 2 p.m. June 12 at The Unity Center, 8999 Activity Road, San Diego. Burial will be June 13 at Miramar National Cemetary.
In lieu of flowers, the family suggests donations to Armed Services YMCA, Naval Medical Center C-5, 34800 Bob Wilson Drive, San Diego, 92134-5000.
blanca.gonzalez@uniontrib.com (619) 542-4559

Awarding of the first “JiePie Award” ™

Tue, 31 May 2011 16:02:20 +0200

WORLD MSA DAY, October 3, 2011 and awarding of the first “JiePie Award”
FOR IMMEDIATE RELEASE: “JiePie Award” Press Release:

1: JiePie Award
2: Rules for participation - registration until June 27, 2011
3: World MSA Day, 3 October 2011 and awarding of the first JiePie Award (status dated May 15, 2011)
Activities for the MSA community to take place in Belgium, the Netherlands and G.D.-Luxembourg.

The “JiePie Award” will be presented for the first time
on Oct 3rd in recognition of the World MSA Day

“JiePie Award”
This award, named after the inspiring founder of MSA AMS.be and MSA-BeNeLux.org, will be presented at the annual World MSA day, on October 3, to a person who writes a winning article, theses or a study on MSA.

This Award is open to all theses/studies relating to MSA and/or any Parkinson’s+ disease.
The thesis can refer to medicine, communication sciences, physiotherapy, nursing, feeding skills or any related subject.

The award aims to promote research and provide information on MSA and Parkinsonism or Parkinson+.

It was JiePie's aspiration that more research would be done to find a treatment and a cure for this still incurable disease.

This award is a recognition to JiePie's tireless efforts, his courage and deep faith that the cause and a cure for MSA will ultimately be found. In addition it is to act as an encouragement to all who wish to explore the still unknown world of MSA.

Data for:
Belgian events: September 27th and October 3rd (details tbc)
Netherlands: October 1st
G.D.-Luxembourg: TBC

The endeavor to bring awareness to MSA

Sat, 21 May 2011 22:56:02 +0200

May 21, 2011 Posted by Frank Cervone frank@hollywoodrepublican.net

I have Multiple System Atrophy. I am one of 50,000 Americans that have it. I don’t have a special form of it. I don’t have symptoms different than others that suffer from it. I am sure my family isn’t experiencing hardships more that other families of patients. The only difference is that I am a politician and that gives me a platform and apparently, more credibility to my causes. This is not a bad thing, by no means, and I’m going to use it to the fullest.

Being a Councilman automatically puts me in the public eye. The newspapers report the good things, and the bad. They print pictures of me at ribbon cutting ceremonies and events. My name has been in campaign ads and on signs displayed in residents’ yards. I am a very public person. My wife on the other hand prefers the private life. For the past eight years, we have compromised (actually, she has been very supportive and stood in the background just smiling, and counting down the days until I am out of office). One thing we do both agree on is being a public figure has been a blessing in our endeavor to bring awareness to MSA.

Frank and Jarrod Martin

We have also met amazing people that we may not have otherwise known. One of those amazing people is State Representative Jarrod Martin. Jarrod is a conservative Republican and the Representative for the 70th District of Ohio. I met him in 2007, before my diagnosis so he has seen the impact this disease has caused to my life and has been there every step of the way to support me.

Miracles for MSA designated March as MSA Awareness Month. When I heard this, I immediately started contacting surrounding cities to request proclamations designating March as MSA Awareness Month in each individual city. Fairborn, Beavercreek and Xenia all were very supportive and I visited each city’s council meeting to accept the proclamation on behalf of MSA patients everywhere. I even contacted Governor John Kasich’s office and requested recognition which was gladly received. I thought that was as much as I could expect from Ohio and was truly, deeply appreciative.

Last week, at the Greene County Republican Central Committee meeting, Rep. Martin approached me and asked if I would like to come to the Statehouse on May 18th. He said he had written a Bill, specifically H.B.184, to make legislation to enact section 5.2267 of the Revised Code to designate March as “Multiple System Atrophy Awareness Month.” He went on to explain that he had sponsored a Bill with Representatives Mecklenborg, Thompson, Carey, O’Brien, Fende, Celeste, Johnson, and Ramos all cosponsoring. It had been assigned to the Health and Aging Committee and there was a hearing to bring the Bill before them for a vote of approval.

I woke up bright and early Wednesday morning, put on my purple MSA tie and specially designed for me MSA cufflinks. I was accompanied by my very good friend, Rose Zellmer (chauffeuring as I have not been able to drive for 3 years) to Columbus. Rose and I found the Statehouse to be very impressive. We immediately headed to Jarrod’s office and since he wasn’t in, I took the liberty to sit at his desk to get the feel of higher politics!

Mr. Martin’s aide directed us to the area where we would appear before the Committee. The halls were very large with very high ceilings and polished marble floors. The furnishings were nothing short of regal. I was seated on an elaborate red velvet sofa admiring the beautiful paintings and statues when Jarrod arrived. Following his lead, we entered the hearing room and signed in. The room was a flurry of activity as our legislators arrived to hear the Bills before them.

When it was our turn, Representative Martin and I approached the podium. He introduced me as a Councilman for Fairborn, a MSA patient, and a good friend and explained how we would like to increase awareness of this horrific disease. He described the symptoms and prognosis of those affected by it. Then he turned the floor over to me to give testimony of my experience with the disease. I was nervous, but the Committee was very empathetic, supportive and eagerly asked questions to better acquaint themselves with Multiple System Atrophy. Some of the questions were about the disease itself, while others were about my experience with health insurance and the benefit coverage and caps of my medical care.

Once Jarrod and I had finished the presentation, he, Rose and I sat and watched anxiously as the Committee unanimously voted in favor of H.B. 184! As the three of us got up to leave, we were followed out by two of the committee members that wanted to have a more personal conversation about how the disease had affected me and what, if any, problems I have had with insurance covering my medical needs.

Would this all have been possible if I had just been John Q. Citizen? Maybe. But I do believe that my predestined course in life was to become a public figure so I would have a platform to springboard from to bring awareness for those that share my illness.

I am so lucky to have Jarrod Martin as a friend. It was very nice of him to take the time to not only sponsor H.B. 184, but to find eight other representatives to cosponsor it with so many other pressing legislative actions that need to be taken to fix Ohio. I am also lucky to have friends like Rose who, as everyone else here in Fairborn who has said if there is anything they can do, is actually there when I ask.

I will update everyone when the Bill becomes official and will keep knocking at doors and talking to any and every one I can to make sure that even though MSA is a rare disease, it is something people are aware of, and physicians are familiar with in order to correctly diagnose it in a timely manner.

MSA may not have their own Michael J. Fox, but they do have Me!

http://www.legislature.state.oh.us/bills.cfm?ID=129_HB_184

http://www.house.state.oh.us/index.php?option=com_displaymembers&task=detail&district=70

Reflect on what we did and what we could have done ...

Tue, 21 Dec 2010 11:50:01 +0100

Dear all,

As the end of the year is near, it’s time to reflect on what we did and what we could have done over the past year.

A lot of good ideas have been raised by different individuals and support groups around the globe. Thanks to every single person for the effort made to bring about awareness of MSA and World MSA Day.

Although we at times feel alone, we have a common interest; that is our fight against MSA.
We are fortunate to be able to communicate through the Internet. Even though we are kilometres apart, we are brought together by a click of the mouse, joining together countries such as New Zealand – Australia – South Africa- the USA – Venezuela – Israel – and all the countries in Europe.

Our voices will be echoed around and will be multiplied each time, again and again till everyone on earth will know what MSA is. There will be a day they find a cure; I strongly believe this.
To achieve our aim, we need to persevere through out the years ahead.

We all make New Year resolutions and would like to hear from all what good intentions they have.
The next World MSA Day will be here sooner than we think. Please; place this date on your agenda and try to organize a local event on or around October 3rd.

It can go from very small actions in the little town by talking with a few school kids and make them aware about MSA. Organize a local Bingo, Bowling …, or even some bigger events together with local Medical support from your Neurologist, Doctor or Nurse. …If you are up to it, even a large show to raise proceeds would be welcome. Please let us know what your plans are and we will add it into the international MSA calendar.

There will be a song composed by a famous Irish singer and songwriter in multilingual language. The song and name of the singer / writer will be released with the song in the near future.

From our side we have a lot to chair and we hope you will chair this with us.
We like to thank you all again and wish you a peaceful Christmas, and a prosper 2011.

Season Greeting to all of you!

Rita Schouppe, spokesperson
World MSA Day Volunteers Team posted December 21, 2010

THANK YOU

Tue, 5 Oct 2010 16:02:25 +0200

From the bottom of our hearts, the organizers of World MSA day would like to thank all those who have contributed to making this event such a great success

We look forward to your continued support and efforts in bringing about global awareness.

Let us join hands around the world,
combine ideas and suggestions in the planning of activities to help promote awareness
and gain support in our endeavors
to promote research to seek a possible cure.

The World MSA Day Team
posted October 5, 2010

contact@world-msa-day.org

Journée Mondiale pour l'AMS

Tue, 28 Sep 2010 16:39:39 +0200

Première Journée Mondiale pour l'Atrophie Multisystématisée

Les associations mondiales pour l'AMS (associations médicales, associations de patients) ont fixé Le 3 octobre 2010 ,Journée Mondiale pour l'AMS

Chaque année, cette date sera dédiée mondialement à l' Atrophie Multisystématisée.
Elle sera l'occasion de fixer un évènement pour chaque pays. En France, pour cette année, nous pouvons envisager une campagne d'informations sur l'Atrophie Multisystématisée : c'est un minimum que nous pouvons faire.
http://www.world-msa-day.org/