PD Blues
 

Hi Everyone. It's been a long time since I have posted here. I would say that I hope everyone is doing well....but, I know that PD is progressive, so I know that everyone, including myself is doing a little worse.

I have divorced and remarried over the past two years. My new husband, Randy Smith has PD as well. (What were we thinking?)

Our PD has definitely gotten worse over the past year. Although, since we are so young, and look even younger, people are constantly telling us we look fine. Ugh. We don't feel fine at all. I experience pain almost all the time. We both tire easily. I still don't sleep well. We find it harder and harder to move. Etc. Etc. You know how it is...

I am still working. I do think that it is the only thing holding me together. My life has been such a tragic story these past two years. Randy and I have just been trying to survive emotionally, mentally and physically.

Anyway, we are still hoping for a cure soon...are we crazy or what? Is there any hope they will find a cure in time for us? PD has already taken its toll on our brains and bodies.

Keep hoping that is all we have.

Maryfrances

I do hope some of you may have heard some good news...

be thankful...
 

dear maryfrances,
you must really be thankful for everything you have, and that is because -your body will do it's best to bring about all you say to it...
not kidding at all - you are blessed more than you know, you have a husband with PD - be very thankful for the love he has for you,
you could be so much worse, my very best friend with PD -died at age 34 after only 7 years of the worse symptoms - I have ever seen...
Merry Christmas!
sincerely,
tena

Dear MaryFrances,
I feel for you both having to deal with PD early in life, but have to say, it is a definitive thing, if you have a good attitude to it you will do better.

While PD takes it can also give, and you have each other. Having to slow down and re-evaluate your life can bring things that you did not dream would happen. While you do have the inevitable problems of fatique, pain, and sleeping badly you are also well enough to continue working and being in the world.

I suggest that you each find something you really love doing, something that takes you out of yourself and into a 'zone' where PD does not nag at you all the time. It could be music, writing, art, growing vegetables, it could be an aspect of your work that you love....... but it needs to be something that absorbs you, is achievable, and brings pleasure instead of stress! If you have always dreamed of trying something that will do this, now is the time! It will improve your neuroplasticity, keep your happy, and you will be growing the ability to get past PD and regain some of yourself.

If you are both doing something enjoyable the benefits will be more than doubled!

Best wishes and enjoy the holiday,
Lindy

I can certainly relate to symptoms getting worse..I was having a tough time for a few months, and I got to the point where I was taking my meds, and nothing was happening..I thought it was time to face the ugly truth..that I was on my way to being a Sinemet junkie..I was taking 600 mgs of CR daily, and on my own added another 300 mgs, and that was just taking the edge off..I saw my neuro when I was finally having a bad day..All the other times I saw him, I was like the car that would run like a cement mixer, untill I brought it to the mechanic, and it would run fine

So my neuro examined me and gave me some 200/200 Stalevo to try, and just when you think there is no hope, a miracle happens..I am in my 7th year, and I have never felt so good!!..Once a few days passed, and I really got that stuff in my system, I take 600 mgs a day, and I am on all day, and all night..I feel almost normal..The tremors/dyskinesia stopped in my right leg..I walk normal, and with vigor like I did before I got sick

I knew Stalevo delivered the Levodapa in a smooth transition to the brain, but what I didnt know, is that the Comtan in the Stalevo blocks some of the receptors that break the Levadopa down before it has a chance to reach and cross the blood brain barrier, so it only makes sense that it was the answer to my problems..Evidently, I have been having a problem with Sinemet from day one, because I cant say that Ive felt my meds "kick in" but a few times in the almost four years Ive been taking Sinemet

I wonder how many people, have the same problem with the body breaking down Sinemet, and dont know it?

Steve I went onto entacapone last year July and had the same thing happen, it was a revelation, and the only negative thing about it was how annoyed I was that my neuro had not done it earlier, I too feel better than I have done in years. Like you I never kicked in to the extent that I was really mobile. With the new regime I never go off to the same extent..... though I can quite suddenly go off once the two have worn off, especially if I forget to maintain good timing. Glad you are feeling the benefit, and hope that this will give hope to some of those who are struggling.

Happy Christmas to all
Lindy

hi ya kiddo!
 

remember that talk we had in Chicago? let me remind you.
PD is what you make of it. You most-likely will have it for the duration. Sorry but I see no cures on the horizon ( I;ll check witha well known researcher to be absolutely sure)

You have a lot of great years ahead you. ALL of your worrying and being "Down in the dumps" about it only hurts you and accomplishes NOTHING except making you sicker. foucus on what you have left, NOT on what you have lost. You are beating your PD, everyday you go to work, every bicycle ride you take. you have a new husband to take care of, so enough feeling bad about life, GO for the gusto!!


your friend
Charlie