I was just diagnosed with Parkinson's disease.

[LastLiberal in PalmSprings]

Any posts will be appreciated.

[displacedvermoter]

1. I have no words of wisdom, but hope

that DU fellow posters can be a source of some comfort and support as you face the challenges ahead.

Sorry to hear of your trouble...

[LastLiberal in PalmSprings]

17. Thank you.

Hope is what I'm trying to hang on to. If not for me, then my wife. This is going to be harder on her than me. I can't imagine the pain she'll feel watching the person she loves deteriorating. That's the one thing that makes me sad.

[DarthDem]

2. I'm so very sorry to hear that

But - you've got this!! Have you already looked into online support resources such as joining a group or groups of people with the same condition? I've noticed from friends and acquaintances affected that the Parkinson's community features such breadth of backgrounds and amazing friendliness. Michael J. Fox has done so much to raise awareness and talk about daily challenges and joys as well as promising new research for management and a cure, and any initial search for assistance and support should start with or at least include his foundation. I think Parkinson's is one of the conditions with the most encouraging outlooks and the best perspectives from people who know, and you'll be in great hands. All the best to you and I know you'll do wonderfully.

[LastLiberal in PalmSprings]

7. Thank you for the encouraging words and information.

Living in the desert makes live support groups difficult to find. I hadn't considered online. I'm just starting to read the information sources my doctor gave me. I'm definitely going to check out Michael J. Fox's foundation. I don't want to overload my brain right now.

Thanks. It feels good to know other people are supportive.

[DarthDem]

38. You are so, so, so very welcome.

All my very best wishes and hopes to you!!! You will do great.

[markie]

3. aw fuck...

sorry.... my 1st real thought... I hate diagnoses that alter our life... just got one myself and I'm there with ya

[LastLiberal in PalmSprings]

15. Those were my exact words when the doctor gave me the news.

It's annoying, isn't it? I'm a guy. When something breaks I fix it. There is no cure for PD. When you're cured of cancer there's a bell you ring; there's no bell for PD. All they know is it gets worse, and worse, and worse. Fuck. No bell.

I've ordered Slang & Swears Dictionary: A Reference Book of over 1,500 Unique, Vulgar and Fun Swearwords From Around the World from Amazon. I don't wanna keep saying fuck. It gets boring.

One time I was substitute teaching at the high school and the kids were using "fuck" as every other word. I put a mark on the white board every time they said it. Then I wrote the word on the board, quieted them down, and pointed out the marks. "This is how many times you've said this word in the past five minutes. It doesn't bother me -- I was in the military -- but once you graduate and get into the workplace, it's going to be problematic. I know I can't tell you to stop saying it -- you'll just say it more -- so here's what you're going to do. Get out paper and pencil and write FUCK at the top. Then write a list of synonyms and another of alternatives, e.g., "fudge." Then each of you will stand in front of the class and read your lists."

They all did it, which surprised the heck out of me. Hopefully it will allow them to catch their behavior and put in a correction. You never know...

As for me, I've got PD. Fuck!

[bucolic_frolic]

4. Sorry to hear, a difficult thing to be told

I've dealt with relatives with dementia, mild thankfully. Meds were a friend. Of particular help was a mainstream eldercare doctor with a naturopath side who prescribed meds as well as any psychiatrist to manage symptoms. All the best to you, and hope you have a strong caregiver or support for the path ahead.

[crickets]

5. Oh, sweetie

I don't even know what to say. 🫂 All the love and strength in the world to you. ❤️

[jfz9580m]

6. I am so sorry to hear that

I met someone with same diagnosis earlier this year-a friend of my dad’s. FWIW she seemed to be managing fine.

I do hope you have some support.
Please keep us posted .

[SheltieLover]

8. Research online

Maybe you will identify lifestyle changes that will slow the progression of the disease.

I'm so sorry to learn of your dx.

One good thing about our community is that someone is usually on to chat with at all hours.

I also agree with the above post suggesting you look into online support groups. They can be a great source of comfort & valuable information.

I don't know anything about this disease but, since medical experts cannot cure it, I would be thinking & exploring outside-the-box treatments & remedies which I call win/wins - can help, can't hurt. Acupuncture is one such treatment & I'm sure there are many others.

I'll be thinking of you.

[NNadir]

9. That's very rough; you have my sympathy. As someone who works on the forefront of drug development...

...although I am nowhere near an expert in Parkinson's disease and have only worked on Alzheimer's drugs, let me say this: We are entering, indeed already are, in the golden age of molecular biology. A great deal of work is being done. A quick look in Google Scholar with the terms Parkinson's and "clinical trials" shows over 7,000 hits in 2024 alone.

For now, from what I can see, opening a few papers, is that levodopa is still the gold standard for treatment, but it would not surprise me if something better is developed.

Clinicaltrials.gov shows that there are over 3000 clinical trials in various stages, some of which have been completed and others recruiting and still others under way.

I'm sure I speak for everyone here in wishing you the best possible outcome under the circumstances.

Good luck in managing this well. You're not done yet, and keep that in mind.

[True Dough]

10. Are you eligible for deep-brain stimulation surgery?

It has been a real game changer for some patients.

My wife's mother was not a candidate for that and it was only around for about a decade when she was diagnosed with Parkinson's 23 years ago. But she's still alive and 82 years old. The disease has progressed, of course, but the various medications she takes still control it for periods.

And there continue to be potential breakthroughs in research. There's plenty of reasons for hope. Give this a read, for example:

https://www.sfu.ca/sfunews/stories/2024/07/sfu-breakthrough-id-s-gene-that-may-reverse-parkinson-s-disease-.html

All the best to you!

[Native]

36. 60 Minutes did a great story on this. The results are miraculous.

Just Google 60 Minutes and Parkinsons.

[MadameButterfly]

11. I have a colleague who found people who had cured their Parkinson's

Disease and he is getting support from them. One wrote a book and I wish I had the title.

i just googled it. There are several books about curing Parkinsons. Don't let anyone tell you it's impossible. If you believe that it will be true for you. Faith and hope are hard, but there is so much support out there these days. Look into Joe Dispenza who is supporting people in healing from all kinds of diseases. And the books will be full of resources. You don't have to be alone with this.

[LastLiberal in PalmSprings]

39. I'll check these resources out.

Obviously, I'm open to all suggestions. Since I'm in Stage One I've got a little time to formulate a plan. I'm eating from the Mediterranean diet menu already -- I miss my T-bone...

[MadameButterfly]

52. Not everyone is open, so it's great that you are

If you are curious about Joe Dispenza he has lots of videos online and talks about healings at his retreats. I witnessed a guy with MS getting up and walking after a healing session at a retreat.

My colleague who is aware of Joe is using other resources so there are options.

Wishing you success on the journey

[samnsara]

12. (((hugs)))

...we will be here for you..

[70sEraVet]

13. Wow. Sorry for the news.

I don't have the knowledge or experience that other people on this post have. I can only wish you luck as you search for ways to slow the progression, or even find a way to overcome that disease.
Don't let yourself become isolated and give in to depression.

[BComplex]

14. Now that's hard for anyone to hear. As NNadir said in a previous post, there is definitely hope.

And something he said has been big news lately: molecular biology is producing some game changing results these days. Just know that DUers are always on top of things around here, and we're behind you all the way.

[LastLiberal in PalmSprings]

40. DUers are empathetic, knowledgeable and supportive.

I couldn't have picked a better group of people for my non-biological family.

[sinkingfeeling]

16. I'm so sorry. When you feel like discussing, I'd like to

know what your symptoms were that lead to this diagnosis. I'm having certain problems, have seen 3 different doctors, undergone first tests, and have more to go. What type of treatment are you getting?
Sorry, I don't want to pry during this upsetting time. Take care of yourself.

[LastLiberal in PalmSprings]

41. I'm pretty open about stuff like this.

Right now I'm taking a small amount of levodopa/carbidopa. It diminishes the tremors. I'm one week post-diagnosis so I don't know what's in my brain (PD) and what's in my mind (fear, worry, anger). I expect to be able to have it sorted out by the end of the month.

[FarPoint]

18. This is treatable and manageable with medications....

There are terrific medical research breakthroughs for Parkinson just around the corner...CRISPR Technologies.....gene editing stuff...

[LastLiberal in PalmSprings]

42. This is a great time to be alive, medically.

I remember when the first heart transplant was performed. All of my major joints (hips, knees,, shoulders) have been replaced, eliminating the excruciating pain I was experiencing. PFM (Pure F*****g Magic)

Science fiction author Arthur C. Clarke is famous for saying, "Any sufficiently advanced technology is indistinguishable from magic." From my POV, that's absolutely true. I have faith that a cure -- scientifically or magically -- is already there just waiting to be discovered.

[Trueblue Texan]

19. I am so sorry to hear this...

Every case of Parkinson's is different and there are some very effective approaches to slow its advancement. My brother-in-law who is in his late 70s was diagnosed more than 10 years ago and his has hardly advanced at all. He is very mindful of eating a healthy diet and walks twice a day--short walks with his dog, but I suspect the activity, as well as the gardening he does in his yard have contributed to his excellent management of PD. Before I retired, we taught Big and Loud exercises to our clients. You can find some equivalent work outs on Bob and Brad's YouTube channel. Keeping your body and your brain active as you can will give you a better chance of slowing the progress of PD.

Good luck to you as you move forward--always moving toward the best outcome.

[LymphocyteLover]

21. what are Big and Loud exercises?

[Easterncedar]

23. LSVT Big and LSVT Loud are great physical therapy programs

We found certified therapists in them at hospital-based physical therapy clinics in Portland and Augusta, Maine, which is to say the LSVT programs are well recognized and supported by the medical establishment, and are covered by medical insurance.

I found them really very very helpful.

[Trueblue Texan]

62. They are copyrighted but...

Bob and Brad (YouTube.com) have developed their own set that you can use. When I was in practice I used theirs because I'd never been trained by the official therapy. I would STRONGLY recommend working with a licensed therapist because they can be challenging. There are studies showing dancing is also helpful in Parkinson's diagnoses. Big, exaggerated movement and forceful use of your vocal abilities are beneficial

[LastLiberal in PalmSprings]

44. Thank you for your encouraging words.

My older sister died from PD when she was a year younger than I am now, but from what I'm reading and hearing (here and elsewhere) factors contributing to the progressing of the disease included lack of execise, poor diet, and an emotional support system. I have all of those and she didn't -- especially a wife who has been in a relationship with me for 30+ years. She should get a medal. Sometimes I'm quite a handful. Write that down.

[LymphocyteLover]

20. I'm so sorry. I don't know much about treatment of the disease but I hope you can get the best care possible.

[LastLiberal in PalmSprings]

45. Thank you. I'm definitely getting the best care available -- my wife.

We've been together for 30+ years and married for 25 of them. And we're still in love.

[Easterncedar]

22. Getting the diagnosis is a shock. It takes time to get oriented to the new reality.

Be kind to yourself as much as you can.

The best online support community I know is based in the UK - healthunlocked.com. It provides community support for all kinds of movement disorders. It was a lifesaver for me when my beloved sweetheart was diagnosed with a rare neurological disease often misdiagnosed as Parkinson’s. There are people there from all over the world, so someone is usually awake when you are! It has great information and links to more. It has people who are navigating this just as you are. I made real friends there.

We had good results from two physical therapy programs. If you can find a therapist certified in LSVT Big (for movement) or LSVT Loud (for speech), I recommend getting started on these or whatever other physical therapy you might like as soon as you feel ready. Your doctor should be able to help with that. There are online resources for them, too. We saw wonderful results with them and I liked doing the exercises along with my guy at home.

It’s a lot to take in, but please be encouraged; you are not alone with this, and there are advances in treatment being developed all the time. Hang on!

I am glad you reached out. Good first step! Best wishes

[LastLiberal in PalmSprings]

46. Thank you. Your words are encouraging and informative.

I'll check it out -- especially voice therapy. My sister died from PD, and during the last year her voice was so weak we used an amplifier to hear her.

[Easterncedar]

50. It was amazing to hear my guy's voice after an appointment

The exercises really helped him. I loved all the therapists, too - good-hearted people who wanted to do whatever they could.

[HeartsCanHope]

24. Hugs to you, my friend.

I'll be keeping you in my thoughts. I also urge to you find an online support group. The members of the group will give you invaluable advice about new treatments, studies, and just practical advice on how to manage everything. You take care, and if you're able, please keep us updated on how you are doing.

[LastLiberal in PalmSprings]

47. Thank you for your kind words and suggested support resources.

DUers are so empathetic and knowledgeable. I'm glad you're my family of choice.

[tanyev]

25. Fight it! My local news did a story about a boxing program for Parkinsons patients.

If boxing doesn't appeal to you, search "exercise therapy for Parkinsons". Lots and lots of info out there.

https://www.wfaa.com/article/news/local/boxing-classes-help-parkinsons-patients-fight-symptoms-dallas-fort-worth/287-1b800e26-a1c9-4e57-90e6-71f71b20e63d

Best wishes. My dad had it and he did have quite a few good years where he could have been more proactive, but he was more of a sit in the chair and snooze kind of guy, plus they didn't know as much about it back then.

[Horse with no Name]

26. That really sucks

In my work, I deal with this awful disease.
Best advice is to get evaluated and treated by nothing less than a Neurologist that specializes in movement disorders preferably at an academic medical center. They will be up to date on treatments and modalities. Nutrition is inportant. Work with nutritionist to find a diet that works for you. Food is medicine! Work with your PCP to optimize any chronic health conditions.
The Parkinson’s foundation has a lot of resources for you to read and help you navigate this.
A lot of the medications have side effects. Work as hard as you can to tolerate and manage the side effects before deciding you don’t want to take that medication.
If you get to the point that you are interested in deep brain stimulation, try to do it earlier than later.
Good luck! You got this!

[LastLiberal in PalmSprings]

59. What a great list of information.

I'm putting together a binder of resources, suggestions, natural cures and more . This may be a serious disease, and I need to take it seriously, but that doesn't mean I can't have fun.

I can't tell you how much the love and support of the DU family means to me.

[cate94]

27. I'm sorry

Sounds scary and overwhelming.

[Dear_Prudence]

28. That sucks.

There are treatments and there is support, but this is a tough turn of events. You need those who will lift you up, but also some friends who will let you blow off steam.

[Hope22]

29. Keep on keepin on.

My heart goes out to you and your wife. May you both see the world in a beautiful light. As caregiver for my sister I once told her I can’t promise every day will be fun but I can promise we will have some fun every day. We did manage to find joy and humor in the strangest places. May you and your wife continue to find love and laughter on your journey. Lean into it when you can. Love and more love to you both. 💗💗🙏🏼💐

[blue sky at night]

30. You are doing the right thing...

by talking about it…getting therapy is a good idea. My brother in law was just diagnosed and they think he has had PD for 10 years! He couldn’t admit he had a problem poor guy. Best of luck to you and let’s hope some more liberals show up to support you in Palm Springs!

[ratchiweenie]

31. OMG. I am so sorry to hear this. The only thing I can say is that they are coming up with such amazing

cures these days that a cure for PD may be just around the corner. There may be a group in your area and if there is you could join it. Lots of people sharing is the best way to find out about new research and treatments. In the meantime, hugs and kisses to you and your wife. Keep us updated on how both of you are doing.

[a kennedy]

32. Just hugs, prayers, positive thoughts, and love.

🙏🏻 ❤️ ❤️ ❤️ ❤️ ❤️

[jrthin]

33. I am so sorry to hear this. Still, be hopeful.

There is much progress in the medical sciences.

[XanaDUer2]

34. I'm so sorry

Wishing you effective treatment and peace of mind.

[LiberalLoner]

35. I'm so so sorry. I wish the best for you. I have MS and I empathize with you. I have been taking NAC as a supplement

And it has really made a difference in my energy levels. My neuro is aware and okay with me taking the suggested dose. Please forgive me if this sharing of information is not wanted or helpful.

https://pubmed.ncbi.nlm.nih.gov/31206613/

[Lulu KC]

37. I know someone with PD

who is taking this and he says it relieves his symptoms remarkably.

[Clouds Passing]

49. NAC is fantastic. It has saved me from bronchitis and covid.

[leighbythesea2]

43. Sorry to hear this diagnosis

A friends husband was diagnosed young. So it’s been decades I believe. Early on, intense exercise is recommended. Heard it slows it.
Later, He had the deep brain surgery & it really helped him.
Reddit has a PD group. Good source for the latest articles and research.

[Clouds Passing]

48. Exercise, especially tai chi for balance, yoga, mix it up, stay with it daily.

I’m surrounding you with love and light. ❤️🔥 Practice that daily.

[Groundhawg]

51. Godspeed

[kimbutgar]

53. I'm so sorry

I spoke with a coworker the other day he’s 63 years old and he was recently diagnosed with Parkinson’s. He said he had these unexplainable shakes and went to his doctor and got the diagnosis. He hasn’t told anyone at work and I will keep his secret. His doctor said he could live for 13 years but between now and then they could find a cure.

Keep my fingers crossed for that cure for you and him.

[SleeplessinSoCal]

54. So much study and research going into this disease.

Hopefully you will benefit from scientific gains in the field.

Stay strong and best wishes to you and your wife.

[LastLiberal in PalmSprings]

60. Science is my friend.

Scientists are my saviors. The cure is already out there, hidden in a locked box. Now somebody needs to find the key.

[LoisB]

55. That is a tough diagnosis to get. I wish you strength for your journey.

Exercise, adequate sleep, a healthy diet, and hydration are all supposed to help. Who knows what medical miracle is right around the corner.

[Eko]

56. Big hug to ya.

[AwakeAtLast]

57. My Dad has lived with it for 20 years

He is 85, still lives at home with Mom. He only drives in our small town. He takes his medications without fail, and his neurologist is very good about adjustments when needed. He also goes to physical therapy every week.

Feel free to PM me if you want. I hope this helps, and I wish you well in your journey!

[LastLiberal in PalmSprings]

61. Your Dad is an inspiration.

The first thing I looked up when I got the diagnosis was anticipated life span. I don't want to leave my wife alone. Of all the things about PD, that's what I hate the most. We've been together for 30+ years. "When I die, will get remarried?" "Of course I will, silly. I've already got my eye on a 21-year-old stud at the university." Well, I guess that's another thing I can check off my to-do list. It's not the answer I was hoping for, however.

Please include my wife in your prayers. She's married to me, and sometimes I can be a handful. Write that down.

[Bayard]

58. Well.....crap

Really sorry to hear this, LastLiberal. Glad you have your loving wife to lean on.

And you have us! DU is a great source of support and strength, your extended family and circle of friends.

Please keep us posted.