Friend with Young Onset Parkinson's -- At End of Rope

Hi Everyone,

I was hoping you all might be able to help me, since you have a wealth of experience and I have none. I am not a Parkinson’s patient, but my close friend was diagnosed with young onset Parkinson’s a few years ago in his early 40s. He was an extremely active person, running marathons, hiking major mountains, and traveling to dozens of countries. At the time he was diagnosed, he had a very good and high-paying job, which I think provided him with a sense of purpose and was really great for his self-esteem.

Unfortunately, in the past few years his mobility and tremors have gotten progressively worse, to the point that he had to stop working last year and go on long-term disability. It seems like nothing is helping his symptoms.

He cannot tolerate Levodopa. It makes him extremely depressed. The kind of depression where you can’t even get out of bed. At its worse he had suicidal thoughts. He has tried Levodopa a few times, but has the same severe reaction every time so it doesn’t seem like a coincidence. My question to you all is, have any of you tried another medication or therapy that seemed to help improve tremors and other symptoms without causing such horrible side effects like major depression?

My friend’s world seems to be slowly shrinking around him, and I fear for his future. He’s only in his mid-40s and he has so much life to live, but the tremors, foot-dragging, poor balance, etc., make his life extremely hard. The standard medication (Levodopa) is worse than the disease (his words). I keep trying to encourage him to work with his doctors and not to give up. Unfortunately, here in the U.S., it’s difficult to see specialists, so it’s not like he can just easily schedule another doctor visit. He is permitted to see a specialist about every 6 months, and it’s a 15 minute or so visit. The doctor keeps pressing him to take more Levodopa.

Thank you for you reading my entry. I’m truly grateful I found this forum. I love my friend and it’s devastating to see him suffer. The physical symptoms are one thing, but the severe depression is what truly worries me. He has very little support from family, and I’m his major support in this world.

God bless you,
Jamie

Hello Jamie,

We are very sorry to hear this story, and thank you for reaching out to us. Our friendly board members are definitely on hand to offer some great advise, however in the meantime we are here to offer support. We recommend giving our helpline a call on 0808 800 0303 and we can offer support where we can.

Thanks

I have no answers for you Jamie as I have so far resisted the drugs.
What I wanted to say was what an amazing friend you are, a truly special person.
I hope you find answers.
Have you tried the Micheal Fox foundation?

Take care

Annie

Hi Jamie
You might want to do some research on Mucuna Pruriens. I purchase the white, seed extract, powder 40% standardised from the USA. I used to take NHS drugs which did not suit me and I have been on Mucuna for 14 months.
I wish your friend better health he’s lucky to have you as a friend
Minky

Hi
Look at the Davis Phinney Foundation .org.
Very good Parkinson’s charity in America.
They may be able to advise you
Good luck