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Feeling down

#1

Hi all, My OH was diagnosed 12months ago, he has finally got his meds on the straight and narrow. He has done so well and is back to his self but with more energy than ever, he has lost his tremor, which was very obvious, its amazing what his Neuro has done for him. On his diagnosis his Neuro said he would have him back to 95% and he has not failed. We have to see now what the wearing off period might be?? the Neuro said it could be 2 months or 4months or 2 years?????? it all depends on how aggressive the PD is. 

I am just hoping it does not start wearing off for a very very very long time, before he has to have his meds added to again. He is now on 6mg Neuro patches one a day, 4 x stavelo a day and one azilect at night.

When the Neuro first diagnosed my OH he told him that he would give him about 10 years?????? We just decided to get on with it and take one day at a time. Today the Neuro said he was extremely happy with my OH and we need to see now what the wearing off period is?which I have already mentioned,but when he said make the very best of the next five years go travel and do all you want to do in life, i felt as if this was bad news, I've felt down since this. Maybe its best to say it as it is and not build up people with PD hopes, what do you think??  love hols x

 

#2

Hi Hollytree

take a deep breath. Relax. Chill out.

The meds are working well. Thats good. For some people the meds don't work.Thats bad.

Your OH is most likely to have average PD. He will gradually increase his medication over the next 12 or so years. Already available are Deep Brain Stimulation and Duadopa pumps. DBS especially is a great breakthrough and extends the number of good treatment years for a considerable time (just how long is not known because it has been so successful). In the meantime other treatments are showing a great deal of promise and are likely to be available long before your OH needs them.

I have been diagnosed 6 years and am still working albeit part time. By all means make the most of the next 5 years, they will be the best GIVEN THE CURRENT TREATMENT but they will not be the only good times. 

The only thing you know about the future is it wont be what you expected. Live now, not because the future is scary, but because thats always been the only way.

all the best

apologies if ranting

 

 

#3

Hi Hollytree

I am 55 and was diagnosed about 8 years ago. Over that time my meds have been gradually increased, with a certain amount of trial and error along the way, until I now find myself on quite a high dose of Sinemet (levodopa), plus a cocktail of azilect, amantadine and Neupro patches.

All along my consultant has done her best to make sure I get as much benefit as I can with the least side effects possible and as a result of this I have managed to maintain a reasonable quality of life. I'm not saying I don't have issues and difficulties and times when I get down but mostly life is still very much worth living.

I'm now getting to the point where increasing my drug intake is going to produce too many side effects so the possibility of DBS is being discussed. If I'm suitable and it's    successful I believe this could give me at least as long again before I'm back to the same point hopefully by which time other options will be available.

I admit I am a glass half full kind of person but I would just like to say to you and your other half that the future doesn't have to be black, maybe not quite so rosy as you  planned, and you will have to make adjustments but on the whole I'd rather be alive with Parkinson's than six feet under.

Regards, mrtoad.