Exactly five years ago today, on May 7, 2018, I was diagnosed with Parkinson's Disease by none other than J. Eric Ahlskog at the Mayo Clinic in Rochester, Minnesota, USA. Almost immediately thereafter, I joined this forum and read a lot about the supposed "Honeymoon Phase" which lasts five years after diagnosis. My disease has definitely progressed, but I'd have to say things are not nearly as bad as I anticipated. I've decided to embark on another five year honeymoon. 🙂
This is a long way of assuring "newbies" that life remains pretty darned good after five years. Don't take anything for granted, but don't lose time worrying about what might happen and/or when it may happen. Live life to the fullest...and extend that honeymoon. Life doesn't end five years after diagnosis.
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jimcaster
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My five year anniversary was on March 1, and thankfully like you I’m doing pretty well all things considered. Sure, there are bad days here and there but overall I’m feeling ok and still have a lot to live for. Best of luck on your next five year anniversary!
I take a 25/100 Carbidopa Levodopa four times a day, which is definitely the most helpful, although I know it only alleviates symptoms. Beyond that, I take a very high daily dose of a Vitamin B complex (with especially high B12 and B6), high dose (1 gram) of B1 HCL, high dose of Tru Niagen, and a high dose of melatonin before bed. I exercised regularly until the pandemic, but need to be more diligent about exercise again. As we all know, what might help me might not help you and vice versa.
thank you I am taking c/L 6am,10am,2pm,6pm and 5mg baclofen 10 pm.super cal plus ,magnesium complex, minerals,osteogard,ultrzyme,omega 3, coQ10,DHA, lipolic acid ,b12,b6,folate, 500mgs b1 for a while. Recently i'v noticed a slight increase in trenors,lip quivering.I don't know if increasing b1 will help that.Your thoughts/ Thank you
I would definitely increase your B1. It really helped my husband. He used to not be able to puff his cheeks out to shave but he has not issues with that or the lip tremors.
As we have observed before, we are on parallel tracks and have similar experiences. A good post, and an important point. If you are newly diagnosedtenor.com/bjtxu.gif
Moreover. There is a lot happening in PD world. There could be a lot of progress at the end of our next honeymoon
That should be really interesting. When you say "the gloves" do you mean an official trial rather than DIY? If so, who is running it and where is it recorded?
And how did it feel? From a DIYers perspective I'd love to put a synergic pair on for 5 minutes. Having measured exciter physical signal amplitude at 0.05mm mid to peak, so 0.1mm peak to peak mine is now a wave of faint tingling. Just audible, but not disturbing my wife watching telly. With a 4mm contact, held to about 0.2mm skin indentation at rest, low compliance and near perpendicular motion, I believe I'm close enough for jazz. How would you describe the feel of wearing yours?
I'm not sure what synergic think they are going to achieve with an unregistered trial. Especially as stanfords patent is going to stop them selling it. But that doesn't affect your opportunity to try the real deal for a few months
How do you feel after treatment. I am well aware of placebo, coincidence and the switchback variation of PD, but I feel so much better after a couple of hours. I really hope to try to get a solid block of 4 hour days in now, although its going to be challenging over the next fortnight travelling for the wedding. With gloves which whilst I believe they are functionally effective are neither robust nor portable. And I don't think Mrs WTP would be happy breaking another nail sewing this close to the wedding
Your description is excellent : now a wave of faint tingling. Just audible, there are 2 different programs in the trial. One may be placebo. I do a different one for 2 months 2 hours twice a day! The gloves belong to synergic labs. They are testing for efficacy. Im very optimistic and intrigued with even 2 sessions under my belt. Grateful to be part of the process 🙏🏼
That’s really good news. My HWP is coming up to 8 years post diagnosis. He recently consulted with his neuro after along lapse due to Covid. “Remarkable” was mentioned several times. The neuro couldn’t believe my HWP still isn’t taking levodopa. He’s RHS tremor dominant and deals with it by exercise(walking and Smovey rings), diet and a concoction of supplements which includes HDT B1 of 1000mg daily.
The sad thing is that the neuro wasn’t the slightest bit interested in asking how this has been managed. He put it down to luck and good genetics……The latter is definitely not the case.
Yes, they are exercise rings that have inner steel balls. They were invented by an Austrian and came recommended to us as part of a Parkinson’s exercise plan. Apparently, they are very popular in Canada and Australia. Each one weighs about 1lb each. There are exercise routines on YouTube that my HWP does daily. He swears by them as the vibration helps his tremor.
Great post Jim and it’s good to know how well you are doing. After dx you really don’t know what to expect. It’s only by listening to others, researching and experimenting with supplements, Red light hats, exercises etc you might discover something that helps you.
My husband is coming up to 8 years after dx although he did have symptoms going back before that. His painful back from an old injury is one of his worst problems and is having some treatments for it. His Neuro knows he takes low meds and is trying to help with balancing them as dyskinesia has also been a problem after 4 years dx.
Exercise is mostly walking as his back can tolerate it, managed 4 miles for quite a few days recently.
He says he copes better emotionally with it now, we have a fantastic family and lovely friends which really helps. He still draws and and writes poetry, finds it like a kind of Mindfulness.
only thing that helps with the pain is CBD cream on muscles and joints and a bit of full spectrum CBD / THC Cannabis edible oil in my tea at bedtime to sleep.
Glad to hear you are doing so well. I guess I'm in a similarly fortuitous boat. I was diagnosed on April 1, 2016 (worst April Fool's joke ever), so it's been 7 years and change. While I can certainly see progression if I look for it, I really am doing pretty well, all things considered. In some ways I think I'm actually in better shape than I was back then. I don't think my "technique," if you want to call it that, is particularly mainstream vis a vis most of what is discussed in this forum, but it has worked for me so far. Onward and sideways!
Great post Jim. I too am at 5 years and look forward to being around for at least the next 20. Are there setbacks? Sure, but things could definitely be worse. Good luck on all our journeys!
I believe I'm in about the same position. five years diagnosed, though symptoms go back to the 90s. RSB three times a week and pickleball five times/week. 4 gms B1, 4x sinemet. And I built some Tass style gloves that I've been using for a couple of weeks.
Hi Glad all is going well for you. I'm 6 years in and not doing too bad except for muscle cramping in legs and feet. Night terrors only once or twice a week but my memory is getting worse unfortunately. But I thought I'd be a lot worse at this stage . I'm 62 now and have to thank Sinemet 250mg x5 a day , don't know what I would've done without them. Good luck and best wishes
I don't have a secret and I don't think my case is particularly unique. As with getting Parkinson's in the first place, I think the rate of progression comes down mostly to blind luck. That said, I think there is enough evidence to suggest that high doses of vitamin B in virtually all types is helpful. In addition to Carbidopa/Levodopa, high doses of vitamin B (1, 2, 3, 6, and 12) are the primary supplements for me now.
The luck factor certainly plays a role in this PD game, but also evidence that you can enforce luck through a positive attitude and a can-do mentality as you show it. Keep challenging yourself, keep believing in a better future and keep laughing. Good luck! 🍀🍀🍀
Good point. "Attitude is everything." However, I am not sure if my good attitude results from fairly benign symptoms or if the fairly benign symptoms result from a good attitude. 🤔
On average, like so many of the thousands of different 'successful' studies, it results in a reduction in symptoms of about 10%. An exponential reduction formula shows that with strict adherence to about only 40 of these studies, you are virtually symptom-free. Brilliant, but I still have the idea that our situation is just a little more serious! Where is the fallacy….? 😅
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The problematic 2nd dose of the day
Any suggestions for managing this kind of dyskinesia?
ketamine, PD and depression
Tremors only on one side
