New member from France
Posted: Wed Nov 30, 2011 7:19 am
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.
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.
