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YOUNG ONSET PARKINSON'S

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Parkinson's Disease
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Posted 6/20/2012 6:50 PM (GMT -5)
Hi, I am 32, diagnosed finally about 2 months ago. Tapering up on Requip. I am stage 1 though my tremor has gone bi-lateral. I have good days and bad days, however pain and stiffness are a constant for me. The rigidity is so bad I can't move in the morning until i have spent a good 30 min - and hour with my heating pad and stretch. I was hoping there may be other young onset people out there who can give me their insight on living with this, what has worked for them, what hasn't, and opinions on more controversial treatments like adult stem cell research and medical marijuana.
Posted 6/29/2012 4:08 PM (GMT -5)
Hi Shygirl32--

I am a newly diagnosed early onset myself. I have not posed before, but hope that some of the more seasoned members will respond to you post. I've had difficulty finding an active site for EOP and would really like to hear from other folks who are dealing with this disease.
Posted 6/30/2012 12:52 AM (GMT -5)
Thank you so much! My doctor, who is a MDS, has me on Carbidopa-Levodopa 25/100, which I've been taking for about 3 months now. The drug was used to assist in my diagnosis. My primary issues are pain and tremor, and I'm taking 6-7 tabs per day. I have read conflicting reports regarding the long-term efficacy of Carbidopa-Levodopa in early-onset patients. Do you have any insight? Will you also tell us about the treatments that are helpful for your father? Thanks again.
Posted 7/5/2012 1:22 PM (GMT -5)
It's not my father who has PD. I do at age 32. My Neuro preferes the dopamine antagonists (in my case Requip) because there are less off periods, less side effects, and levodopa should be put off as long as possible because it becomes less and less effective the longer you take it, 5-10 years max. Not to mention the dyskineasa (sp?) associated with the levodopa, which is not an issue with the Requip. I am still tappering up on my dose, but I take 4mg of Requip (for now), 20 mg adderall 2x a day, and klonopin 1 mg 3x a day. This seems to be the almost magical combo of meds for me. I haven't felt this good, or more like myself in years. My only complaint still is the pain and stiffness in the morning. Most days it takes me 2 hours of heating pads and stretching in bed just so my feet can hit the floor. 1 hour on a good day. I think I am going to ask my doc if pain killers would be appropriate for when I first wake up. They work so much faster, and would be a good crutch (I think) until the rest of my meds kick in which takes at least an hour. The pain meds kick in in about 15 mins. If I were older or didn't have 2 small children to care for I would just deal with the 2 hour ordeal in the mornings, but I don't have that luxury.
Posted 7/7/2012 5:52 PM (GMT -5)
i've been on levodopa for 12 years,and it is still very effective for me.i take it along with mirapex.Wish you the best .Ed
Posted 7/11/2012 9:38 PM (GMT -5)
yekkimo
I have been taking Azilect and Artane for 4 1/2 years with good results (except for my wallet). My neuro wants me to start carbidopa-levadopa. Read the insert. Warns against it if you have glaucoma, which I have. Do you have any info on that?

Also cautions against alcohol (drinking kind, not rubbbing). Do you?

Dan
Posted 7/17/2012 12:44 PM (GMT -5)
Hello - I am new to the board but not new to parkinsons. I was diagnosed in my mid-late 30's and I am now 50. I have pretty much been on all of the meds. - Requip, Permax, Mirapex, Stalevo, amantadine, selegiline, etc. etc. I have been on carb-levadopa for 8-10 yrs. and it seems to be the best for me. Requip was not good for me and mirapex caused all kinds of side effects that nearly ruined my life and marriage - addictive, compulsive behavior.

I had DBS in 2009, which has been very good to me. I am down to 12 pills a day (carb-lev plus comtan). At my peak, prior to DBS surgery, I was taking about 40 pills a day.
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