HealingWell
Search Close Search
☰

dont know what to expect?

Support Forums
>
Parkinson's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/6/2012 8:29 PM (GMT 0)
I am 40 years old and by my guess Ive had parkinsons for at least 3 years already.  It started i guess feeling very stiff and sore all the time although at the time I had no idea that was because of parkinsons.  In the last year I noticed I was losing dexterity and small motor coordination in my hands.  Then even I never really noticed it I was moving my hands and arms really slow.  My kids would ask me dad why are you being so careful when I would try to pick something up or move something.  My wife would ask me why I was stooping over all the time when I was only 38 years old.  The last thing was my right hand started trembling.  That was enough I made a doctors appointment.  Next thing I knew I was taking carbidopa levadopa and really nervous about the future.  Ive heard about pigd form of parkinsons and wondering if this is what I have.  Ive also heard that with the symptoms I presented with that this is probably the case.  Everything Ive read is that this form typically progresses faster as seems to be what is happening.  Really like to hear from anyone who has been down a similar road with there battle. 

 

Posted 2/7/2012 1:36 AM (GMT 0)
colt45,
pd is often classified as either postural instability,and gait disturbed or tremor dominant.Many of us myself included seem to have both.Kind of difficult to label this disease.Have you seen a movement disorder specialist?These neurologists would most likely be able to help you.I wish you the best,and hope you find a neurologist that can address your individual symptoms.Ed
Posted 2/7/2012 5:09 PM (GMT 0)
I take Azilect and it seems to have stopped the progression of the symptoms. It's very expensive but worth it. My neuro says that sinemet should be saved for later as it has side effects and stops working after a few years.

Dan
Posted 2/8/2012 12:07 AM (GMT 0)
Thanks Dan, i was recently put on mirapex. Have you been on this, was it helpful if you were. How expensive is the Azilect?
Posted 2/8/2012 4:17 PM (GMT 0)
colt
I was taking sinemet for about three weeks. Read about side and long term effects. Read about Azilect. Neuro refused to prescribe Azilect. Said it is too expensive. Can you believe that!! It's MY choice. MDS neuro agreed that sinemet is for later. Azilect retail price this year is $12.15 per pill. One a day. I hit the gap mid July. Pay half after that. My neuro and I see no advancement of the disease. 4 1/2 years. Also one Artane a day. Helps to stop tremors. I take nothing else.


Dan
Posted 2/16/2012 9:00 PM (GMT 0)
Hey Dan, Just got back from neuro today, he saw that my symptoms were progressing pretty rapidly. Refered me to a parkinsons specialist at KU med. He also discussed putting me on azilect to try to slow down progress. Looked it up on internet looks like there are a ton of side effects. I know you said you have been on this for 4 1/2 years. Have you experienced any problems with side effects. I appreciate any wisdom from your experience you could give me. thanks Colt
Posted 2/16/2012 10:05 PM (GMT 0)
colt
Everything has side effects, even sinemet. I have experienced no side effects except occasional dry mouth. That is a side effect of Azilect and Artane. I take one of each daily. Be sure the neuro you go to is a movement disorder specialist.

I have not noticed any distinct progression of PD.

Dan
Posted 2/17/2012 9:46 PM (GMT 0)
Dan Thanks for the advice Dan. I got a call back from the nurse at nueros office and she found a way with my insurance to get me on azilect for only 25 dollars a month so Im pretty excited about giving it a try. On your instruction I confirmed with her that the specialist they are sending me to is a movement disorder specialist so hopefully Im getting on the right track. All this is pretty new to me along with a lot of the terminology. I really appreciate your time and advice Colt
Posted 2/18/2012 4:49 PM (GMT 0)
Colt
I hope what I said helps you like it does me. In addition to Azilect I take 2mg Artane (trihexyphenidyl) to help with tremors. My neuro says that that small dose amounts to nothing, but if it helps keep taking it. I can incrrease when I think I need more.

$25 a month Is great. My copay is $117 for 90 days. I am on medicare. I will hit the "donut hole" mid July and will pay 50% the rest of the year for all prescriptions. 50% of $12.15 per pill one a day. Plus artane that is generic.

Dan
Posted 2/18/2012 5:13 PM (GMT 0)
Colt

Have you noticed any changes as to which hand you use doing everyday things? Assuming you are right handed, do you find you use your left hand more?

I have a ping-pong table. December of 2009 I stared playing by myself with the table in playback position. One day after a couple weeks I hit the ball with the paddle in my right hand and the ball went to my far left side. Too far for a backhand. I switched the paddle to my left hand and returned the ball forehand!! I did not try to do this. I just did it. I was so surprised thay I just stopped. I have never played left handed or even held the paddle in my left. I am now as good or better left handed. I switch from right to left and back while playing. Even against another person. The exercise makes me feel better and helps my coordination. I live in Michigan. We have been in Florida since the end of January and will return to MI end of March. I have no ping-pong table here. I can feel the difference from not having a table. Can't wait to get home.

Dan

Posted 2/19/2012 1:55 PM (GMT 0)
Dan......................Actually Im left handed and I rely on it pretty heavily as right side is most affected right now. That is really interesting to hear about though. I need to get serious about some therapy to help coordination and reaction, maybe a ping pong table is in order. Maybe I can get insurance to cover it (ha ha). Thanks Dan take care........................Colt
✚ New Topic ✚ Reply