PD individual evolution

[ion_ion]

Few days ago I posted about my PD under the title "New PD owner". I got my diagnostic in august after three doctors before said I have ET. It started 2-3 years ago with random right hand shaking which got worse this year. Recently I noticed random shaking in my right foot. Other than these I do not have yet other symptoms and I do not take any medication even I was prescribed levodoba and amantadine. I noticed the self control and fighting the stress and depression plus sports are very helpful in slowing down the disease.

It would be interesting and very helpful if people write about their PD evolution at this thread including the medication. GymBag already did and it was very helpful.

Thank you all for your input.

[Farooqji]

You are right

[Hollandaise]

Hi Ion_Ion, I can tell you something about my Parkinsons, but of course it doesn't mean that yours is like mine! I think every single person has it in its own way.

I started trembling in my right arm/hand at the age of 32. It became worse and worse and I thought it was a nervous thing. About some time I went to a doctor and he sent me to a neurologist who diagnosed me essential tremor. But after three years we knew i had Parkinsons.

The first ten years i could live with it, i was often tired and sleepy, but i did quite well. But then it became harder and we had no other solution then DBS. This was done in 2013 and the hardest time was yet to come... the DBS didnt work the way i expected and we couldnt program the neurostimulator in a way that i could llve with it. It took four years -awful years - to find out what worked for me. Since spring this year i feel better.

So now i have Parkinsons 21 years and I still play tennis (not wiht patients, but "normal" people and i am proud of that, but the illness privated me from lots of things. I am not happy or lucky to have this desease, but i have to deal with it. What doesnt kill you makes you stronger - thats just Parkinsons.

After 21 years I do fine, regarding other patients and i may not complain. But i cant help dreaming about this other life - the possibilities that you have when you do not have a chronic, progressive desease. Its not easy.

I wish you all the best and i hope that yours goes as slow as mine.

[ion_ion in reply to Hollandaise]

Thank you very much for your reply. I wish you to play tennis another at least 21 years from now.

Regarding the DBS how hard is to use it? They have at certain interval of time to replace the battery? It is fully integrated in your body? Do you still need medication?

[JohnPepper]

Have you looked at my profile and what I have achieved with my Pd? I don't claim that everybody can do this but it is worth a try and it costs nothing! That is probably why it is not popular.

[Hollandaise]

Dear Ion-Ion,

For the DBS, you better try the internet, there you can find all the information and for me its difficult to explain in English, my English is not so good!

Normally it takes a few months to find the right settings, but in my case it took almost 4 years! They were just looking at the ordinary ways, but I tried the whole time making clear that my Parkinson is different from most people, so may be I need to be programmed differently. It took a lot of time to convince them to try something else, but it worked out well! More or less...

And replying to John Pepper: I think you did well but I am not sure that it will work for everybody, like you said yourself. I think for me its too late or do you have another opinion? What I dont understand is. how could the doctors tell you that you have indeed Parkinson, since you have no symptons of it anymore?