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Hi,
I am interested in hearing from anyone else who also happens to have Young Onset Parkinsons disease (YOPD).
I'm not finding tons of support in my community or understanding of the disease in someone my age (41).
I would like to hear from anyone/everyone else who deals with YOPD and how they're doing and positive steps they are taking to deal with the disease and get on with the business of life.
I hope to hear from you soon!
Jim
I hope I'm doing this right. I have been suffering since I was 43, and still don't have a definite diagnosis. My neurologist thinks it may be psychogenic. However I recently began taking carbidopa/levodopa and it does seem to help.
I wish I could give you some advice how to take positive steps to "get on w/the business of life." It sounds like you have the right attitude.
Are you working full time? What medications have you found effective?
I think that good nutrition and adequate sleep are essential. That, in combination with keeping stress to a minimum has a HUGE effect on me. Easier saidthan done, right?
Talking with others, not just about the disease, but about anything is helpful. I feel very alone.
Write again--
new girl
hi
I am 50 years old and I was recently diagnosed with YOPD, I had been sick for 4 years prior and was being treated for a B12 deficiency by a local Neurologist, at the request of my cardiologist i started seeing Neurologists in Phila. i have started taking Azilect and I am feeling so much better. My ot and pt recommended a exercise program called the Big program which includes alot of big movements. I am able to walk 30 minutes every other day now, before I could barely walk around the block. I do the exercise program on the days I do not walk. Are you on this program?
Hi,
I understand your frustration with getting diagnosed. I was in the same boat for 2-3 years....I gone to 4-5 neurologists over that time and they said the same thing..psychogenic...so I thought maybe they were right and just tried to forget about it and get on with my life. But, the slowness, rigidity, and tremor in my left thumb never went away and slowly I was feeling worse all day.
So, I took another chance and went back to another neurologist you diagnosed me right away with YOPD. I also take Cardopa/Levadopa and it helps a whole lot. I work part time as a chef and also continue to look for full time work, as I am feeling pretty good.
I also think exercise and good nutrition are keys to a healthy life, and I belief in both. I agree that stress seems to make things harder on me.
Hope to hear from you again soon.
Jim
No, I'm not on this program right now, but I think I'll check it out. I don't have a physical therapist yet, but it sounds like a good idea....does walking seem to help you?
Jim
Yes walking seems to help with my limbs as far as pain and stiffness. I do not feel as stiff as I did. It is also a great stress reliever. the exercise program seems to be helping alot. i would look into a PT but try to get someone who deals with Parkinson patients only.
I have alot of pain, particularly in my hipsand lower back. I never realized Parkinsns was supposed to be so painful.
ng
Hi,
I know what you mean about the pain...I try and stretch and move as much as possible when I'm not that stressed or tired. Do you like to swim/spend time in a pool or suana? Sometimes that helps loosen the tension in the lower back and hip areas.
This sounds like a good idea..thank you! I've been searching today for PTs in the PD area.
You should try going to a Chiropractor, one that does pressure point work. my Chiropractor helps me alleviate alot of my pain.
Hi
My chiropractor helps with adjustments and something called cold laser. It seems to help me alot.
The only problem w/chiro is t hat insurance usually puts a limit on the annual no. of visits, and unless you're wealthy (which I'm not!) and can pay out of pocket, you don't get the benefit of ongoing treatment.
Call your insurance company and find out how many visits you have per year, then divide into monthly visits. Even one visit a month will benefit you. I am in the same boat not wealthy, but I do Insurance work and you can find out how many visits are authorized.
Hi,
I am 55 and was diagnosed with YOPD in 1990. I have the tremors very bad and shuffling of the feet. I take SinemetCR and it does help. I also hae pain and stiffiness and my balance is off. My PD is hereditary.
Does anyone here also have essential tremors?
I'm also limited as too how many times I can go to the Chiropractor so, I just stopped going. Has anyone here benefited from Chiropractic?
i was recently diagnosed with pd july 2nd. i am a 39 year old catholic priest.
am struggling both physically (adjusting to the meds, i guess) and struggling to keep working in the parish. right now my greatest difficulties are pain when i am standing or walking. i recently purchased a wheelchair to get from building to building. sure is a tough time. this is all new to me; just the being sick is a shock to my pride not to mention being so dependant on others. i wish i could give you some advise, but from what i read and hear the best thing is to get as much info as possible and run everything by the doctors. i hope to see a specialist soon.
My husband was diagnosed in January 2007, at the age of 35, just before we met. His biggest struggle is with loss of functionality on the right side of his body, particularly tremors in his right hand and foot. This has been difficult for him, as he is a mechanical engineer by trade and a drummer in his free time.
He has since lost his job of 7 years (under a flimsy pretense, but I'm still convinced it had something to do with his condition, but I don't have proof), and, therefore, his insurance.
After he was diagnosed, his doctor sent him to a neurologist, who put him in a clinical study for Mirapex. When the study was over, the same doctor gave him a prescription for it, and pretty much did nothing else in the way of treatment, since he no longer had insurance.
He moved up here to SE Wisconsin with me, and we were married this past fall. Since we met, I have been trying like crazy to find information and treatment options for him, but, as someone said earlier, it is so easy to get lost in all the information out there--I really don't know where to begin.
I have searched for support groups for him, but have been unsuccessful finding one in our area that is for YOPD. He was going to a general one back down in IL when he was diagnosed, but he finds it more than a little depressing to be the youngest person in the room, with no one to relate to.
I want so much to help him and be there for him, because if I leave it to him, he will ignore it as much as possible so as not to "be a burden" on anyone. But it kills me to see how much it frustrates him to be going through this.
If anyone has any advice or suggestions on how to start on a more aggressive treatment path, or where to find support in SE Wisconsin, I would be so grateful. I'm sure he would benefit from reading these posts and knowing that he is not alone.
Thanks so much!
Saundra
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