New member from France

[FGKUU]

Hello everyone,
I just joined your group, so I'll introduce myself quickly. My name is Philippe, I am 54 years old and now lives on the west coast in Les Sables d'Olonne in France after spending 50 years in Paris, where I was born.
I am a POT ! (Primary orthostatic tremor) I was diagnosed in 2003 by the team of Professor Vidailhet who was then at the « Hôpital Saint Antoine » located in Paris (France). Doctor Apartis confirmed the diagnosis after raising its record to 16 Hzt tremor in the legs which disappears when walking or at rest.
I was followed from the beginning by a medical team at the Saint Antoine hospital (Doctors Trocelo, Vidal and Yaici), some time by the Pité-Salpêtrière hospital, still in Paris (Dr. Jedynak) and now since I arrived in this part of France by the Nantes University Hospital (Professor Damier ).
The treatments tested were unfortunately ineffective. Whether it Rivotril, Mysoline, Neurontin, Keppra, Avlocardyl, Sinemet, Zoneg …You see we did not stay without doing anything! After this phase of trials; I decided to stop any treatment in 2007, given the poor outcome. The safety concerns with the side effects were much larger than the expected improvement! So I resigned myself to live with my disability and that damn orphan disease treatment.
In 2008 and early 2009 I was a victim of epilepsy, probably unrelated to the POT, while I was driving! The two crises have led to a road accident with serious injuries ... had to agree to head back to the pharmacy ... to cover the risk of new crises and since I am under Lamotrogine 200 mg is an antiepileptic I support fairly well. This one has no effect on the tremor but appears to be effective since there was no new crisis.
After these episodes I reorganized my professional life, I am now much more available there are still two or three months. I left the company that I created there over 24 years ...
Throughout my past life I was an active guy (a little too much around me, it seems!) I had two hobbies, boat and plane. In 2005 upon renewal of my license I had a lot of effort to resign myself, after 13 years of piloting, to stop net! We need a medical certificate to be able to pilot issued by an aviation doctor who has never heard of a rare disease as POT... I have also sell the small sailing-boat who gave me so much pleasure here in the sea, I am no longer able to manage safely with my trembling...
Fortunately I still have all my professional or personal memories of moments and often preferred. This is the basis for new projects that I take the time to talk to you in a future post. Our neurodegenerative disease is described relentlessly and constantly evolving, so I will adapt and travel more quietly. In cargo at my own speed!
Well, I’m looking for information and want share my experience out border. Do not hesitate to contact me.
In a future post I will say you how I’ve change my mind about my story life since I’m trembling.
Sorry for my English…
I’m looking forward to hear from you soon!
Greeting from France.

[golfnut]

Welcome to the forum! I think writing your own diary here is a very good idea - probably because I have my own!
And it also shows how different our journeys are...

A bientôt,
the golfnut

[FGKUU]

Hi everyone,

Thank you very much for your messages
Please visit the folowing link : http://www.orpha.net/consor/cgi-bin/index.php?lng=EN
You will find lot of informations as well as publications, team medical, research news, ... On POT.
Hope this website will give to you some new data.

Windy greetings from Atlantic ocean

Phil

[MaureenB]

Thank you Phil for the link, it is a very informative site.
regards MaureenB.

[owen-lynettepickles]

Thanks Phil for the link. It's always good to get any new information available - shows us that there are still medics around the world interested in our condition and we're not being forgotten.

Greetings from a very warm Pacific Island.
Regards, Lynette

[Betty]

Hello Phil, and welcome to the forum. I am sadden to know you too have POT, but you have found a wonderful site with people who definitely understand your plight. We are here to help in any way we can.

Do keep us posted as to your progress and good luck.

Betty

[FGKUU]

Thank you all for your reply. I'm In canada where I havé sharing some Time with à couple of friends Who are living there.
I'll flying from here to San Francisco the next monday.
I'll spend 3 weeks with my son. He's working there and I can see him one Time a year.
Will contact you IN 2012 !
Merry christmas and happy new year all.
Philippe

[Betty]

Hello Philippe,

Good to hear from you and to know you are doing a bit of traveling. We have a few OT friends who live in Canada.

I'm sure you will enjoy your time with your son in San Francisco during the holidays.

We will look forward to hearing from you in 2012!

Have a very Merry Christmas and a Happy New Year.

Betty

[FGKUU]

Hi there !
Here in France this week end was the telethon show tv as every years since 1986 !
We are having a great one, even the economics crises are presents in our country...
The result donates during the 30 hours tv show is over 81 000 000 euros !
If you want to know more about this, please follow the links :
https://donate.telethon.fr
http://www.afm-telethon.com

[Betty]

Welcome to the forum:

Thank you for the information regarding the telethon in France; it's always good to know what is going on around the world.

There is a study being done in France on OT; you can check the forum to read about this. It is being done through NORD.

Betty

[FGKUU]

Hello Betty ! Please let me know the link to join this topic. 8 years ago I've spent one week as a POT to test dopamine without succes. It was the first french study research in POT.
Gretting from the other side of the atlantic.

[Betty]

Hello Phil,

I hope this link takes you to the information on NORD. If not, check the "Board Index" and look for NORD.

Try this link:

http://www.orthostatictremor.org/phpBB3 ... m.php?f=41

Betty

[gloria]

Hi! Phil : Good to hear from you again, see that you are traveling well ! To get to the text that you were looking for, Betty's suggestion to go to Board index is best and just scroll down to NORD Research Grants, one of the Grants went to research in France....... You are so aware of the importance of spreading awareness of OT perhaps you might like to start a support group in France. I have found that meeting with other OT people is the the best medicine we have. Perhaps the people who are participating in the study might be interested. Like your spirit and thanks for posting. Gloria

[FGKUU]

Hi Gloria !

thank you very much for your post who is helping me to find the NORD's TOP research activities...
I know this doctor who is working at the hospital where I spent six years when I lived in Paris.
She is working on as the website of our french association for tremor disorders show : http://www.aptes.org/recherche/les-fina ... e-meunier/
I will contact the team and let you knows what they'll communicate...
Phil