Cure Parkinson's

18,753 members • 19,353 posts

A time long ago, in a land far away . . .

I was reading old HU posts (get a life, I know,) came across this thread from 5 years ago about relationships and how PD pushes some into failure while making others stronger and it made me realize how the HU class of 2018 talks about their symptoms and what works, but not so much about relationships.

I found it an interesting change of pace.

Many intimate, touching, heartfelt and heart wrenching comments.

(I also noticed, as I’m sure many of you have, that everyone drops off HU after awhile, except, apparently, park_bear, who has a comment on this thread and is contributing still, 5 years later, which raises the dreaded thought, how will we survive when easilly drops off?)

healthunlocked.com/parkinso....

42 Replies

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We're going to do more beautiful and interesting things because we'll all be much better? 😀

Interesting post. I am extremely lucky in my primary relationship. We have been together 16 years, with me having PD for nine, although the first three years were mild. We got married three years ago. This was after I had gone off meds for a year and was almost completely debilitated so we both know how bad it might get. We have a business together and I am unable to do much of what I used to do, mainly talk on the phone with customers and suppliers, so he has had to pick up my slack which makes him extremely overworked. I worry about being a burden but he never makes me feel that way. Sadly, intimacy has become a problem as I am rarely physically comfortable due to dyskinesia. But we love each other and our life together very much.

I have only been on HU since December of 2016, but I have noticed that many of the members are no longer active. The same thing happened with several PD blogs I read early on. It just gets to be too much. Maybe easilly (Art) won't drop off because he doesn't have PD.

Such a nice story. Thank you for breaking the ice. So, I'll tell mine.

My wife, who was a professor in the Department of Nursing at the U of MN suspected I had Parkinson's before it ever crossed my mind. She took me in to see the head of neurology at the U who diagnosed me with PD in about 30 seconds. We got married 2 months later. Is that LUV or what? Like winning the lottery ticket.

I should be brave like you Julie and reveal my intimacy status. That horse left the barn many years ago, but we make up for it in other ways.

Next.

A good reason not to drop off is that 5 years ago there was no scuttlebutt about thiamine, so a lot of those people who'd be helped by it, don't know about it.

Scuttlebutt?

As in rumor, but probably not the best word

Out of interest do you believe that b1 can stop the progression of Pd or at least keep things at bay ?? It’s what I’m hoping for !

munchy,

Yes, I do believe B-1 can stop the progression and keep it at bay, but it would be prudent to temper our hope by the odds of that happening. Apparently, even the skeptics acknowledge about one in 5, and perhaps one in 4, experience a meaningful reduction of troublesome symptoms. Certainly, it stops the progression in some people, but I don't think we know what percent that is. I believe Dr. C believes that number is substantial.

I know of no other compound that is of such benefit to so many people.

This phenomenon provides a concrete rationale for hope and for each of us to keep searching for a regimen that works for us. IMHO, it's highly unlikely that B-1 is the only compound on the planet that will measurably benefit PWP. Many are doing quite well without thiamine.

I'm 90% certain there is 'sweet spot' out there for me and I'm not one given to flights of fancy. I suspect a lot of us are looking for something that will happen quickly and dramatically like B-1 has for many. Instead, I believe I will achieve it slowly and incrementally and that I'm getting closer -- as are many, many others.

Been married 37 years. My wife knew I had PD before I did, before the DX. I really refused to believe it for some time until the tremors really kicked in. 3 kids, all grown and blessed for the support they are giving me. If my wife feels that I am being over the top, when I shouldn’t be ( and she is always right). She lets me know. When I do have a bad day, she goes shopping! (Just kidding, very supportive).

Before there was Easilly there was Silvestrov, a phenomenal researcher who shared of what worked and what didn't.

I think some drop off because they have come to grips with their PD and have reached a working formula for themselves. I think some drop off because they came to find out they suffered from a neuro far worst than PD.

Silvestrov is still around- I think I saw him in an

SCA forum ... agree he is excellent at research! Very glad we have Easilly & others in our midst.

Thank you for sighting of Silvestrov! I will always be indebted to all the help he gave me for my son.

someone had misbehaved Silvestrov on this forum a few weeks ago after which he has been absent

That's a shame. Could you please refer me to the thread? No good deed goes unpunished.

Yes —Next time I see it !

Wait: I goofed - maybe it was Sunvox instead of Silvo....

Silvestrov is no longer on here. All of his posts are gone. This is very sad. He's been such a great help to many.

healthunlocked.com/parkinso...

Thanks iqbaliqbal.

Really sunvox?????

In response to a post by Rich a.k.a. Silvestrov.

"Edinboro University of Pennsylvania degree in painting, and then you have to work as a landscaper to support yourself when your painting doesn't pay enough, and people are following you for medical advice.

That is a perfect example of the tragedy created by the internet."

Silvestrov here:

healthunlocked.com/parkinso...

Thank you. I had searched for him and the only thing that came up were mentions of him in other posts. Great to know all of his helpful info is still available.

Silvestrov has 102 PWP following him. He has his own folder in my file system into which I put a copy of his every post.

The nature of this disease is complex with many many aspects to it and it requires you to be as informed as possible in order for you to do your best to deal with it. That means that we need as much good input as possible and both Silerstrov and Joe bring that with them to this forum. We need all of their information in order to have the best advantage we can have in fighting PD!!!

If you see this, Silverstrov, know that your knowledge, research and intent are very appreciated here, so come back and do what you do so well! The sum total of all the information that so many members bring to this forum is the knowledge which empowers us......more knowledge, more power, better quality of life, which we all want! Come back!!!!

Art

I agree with every word.

Silvestrov helped me and many others. I was ashamed at Sunvox comment. He certainly did not deserve that. Silvestrov is a kind and caring human being with a heart of gold. I for one miss his comments and recommendations. Nobody deserves to be spoken to like that.

What’s sca ? I miss him!

I have given some thought to this matter before. I came up with few different scenarios. 1. You have accepted your lot and that is it. Two. Even though you took an active role in the beginning nothing is happening, no new treatments. Three. You have gotten worse and worse and worse and it doesn't make any difference, it just doesn't matter. Four. You might have died, you might have dementia or you might be depressed. 5 you might be just too busy for hu. And number six you've heard it all before. Mary

Since we are sharing, I have been married since 1972, we have an only daughter and to our amazement 4 grandkids . We were going to travel and have some fun, however that has been precluded by my Parkinson's. My husband has taken over many duties, including cooking. I tell him how to do it and he cooks. I do some cleaning and I still do some cooking and I do all the grocery shopping. We're very happy together at least I am. I think that he is happy too. I think what helps is that neither one of us has expectations that cannot be met. Mary

I have to watch what I eat too. I have been reading about alkalinity vs acidity of foods and how they effect the body and how it impacts its functions. the more acidic it is the harder it has to work and it creates heavy load on the kidneys and other organs. this book has a really good explanation and an index of foods and their alkaline vs acidic ratings. thought it sounded pretty reasonable. the dr also has a website with information.

amazon.com/gp/product/07570...

woops! replied to wrong post

I thought you were addressing your relationship with food. Made perfect sense. 😁

I am very fortunate that I am still close with my ex-husband. I know I can call on him at any time and we know each other so well that it is comfortable to be helped by him. Still I do live alone and that is sometimes hard. It's not the physical that gets me it's the mental. Nobody here to distract me from my negative thought patterns and the depression and anxiety that always lurks at the edges with Parkinson's. Also if I want to see friends and family I have to motivate myself to get out and that gets harder as time goes on.

Marc,

The reports of my demise have been severely exaggerated!😁😁😁

I can hear a big collective sigh of relief wafting across the country

Don’t ever leave us!! Ha ha

Wow! Talk about a gal that really fell for you and cares about you! Thank you for telling us your story!

Speaking of my wife, she had a hip replacement not long ago, so I equipped our bedroom with all the accouterments that she might want so she could convalesce in comfort. Small TV, cable box, Alexa, headphones, books and whatnot. As our bedroom is on the 2nd story and my computer is in the basement, 2 stories below, to ensure I was at her beck and call, I bought a cheap set of walkie-talkies. I took on all the household stuff, cooking, cleaning, grocery shopping, laundry, and so forth while she laid about in bed watching soaps and eating bonbons.

My ONLY request was that when she called me on the two-way, she use my call-sign ‘The Eagle.’ She calls me Bald Eagle and thinks that’s funny.

Well.....at least she isn’t calling you Walking Eagle.

Good morning MBAnderson,

You are very kind to have reached out to me in a private message after reading my post of 5 years ago. Yes, I wrote the post that you shared a link to above. Though I don't often post, I am a regular reader still. As you have inquired, I am alive and well, though my life is greatly changed in many ways, yet much the same in others. (As I just reread that, I had to laugh....as I pale in comparison to what I used to consider alive and have obviously long since forgotten what it's like to be well.) Having had this f*#"ing disease for just over 15 years now, it's sadly become who I am. In fact, I used to look forward to nights that I would actually sleep long and sound enough to dream, as in my dreams, I was the well me again. Now, even in my dreams, my body is controlled by the evil alien of Parkinson's within me.

So let's see, 5 years ago I had just left my full time job and began collecting SS disability at the age of 55. (I had continued to work for 10 years after being diagnosed, which was likely 2 years longer than I should have. During that time, I used to believe that there was hope in denial.) In the last 5 years, I've had little choice but to accept reality and change. Both the progression of the disease and the things that I've had to admit and the changes that I've had to insist on. We've had to sell the livestock and farm and relocate to a ranch home. A change that I think my husband resented for some time. Though at least now, I think he's come to realize that the physical demands of the farm were becoming too much for him as well. Though he continues to say that he'll never leave me, we spend little time together. Even though he has since retired, he leaves most every day as he says that doesn't want to waste his life just sitting around the house. I am however not necessarily lonely or sad, as I am very comfortable in our home. I have seen to making changes within our home that make my life easier and more comfortable. (Though far from comfortable during my med off times, which occur more and more often, I have found ways to at least deal with it in my own home.) I still enjoy a few hobbies and am still able to do most household chores, though have learned not to push myself. I especially enjoy the companionship of my pets and have come to accept a much less social and active lifestyle. I still have hope that my husband and I will find a shared interest, though I'll be okay if we don't.

Sedona,

Thank you for sharing your journey these past 5 years. It sounds like you’ve finally reached a level of acceptance which I hope brings a modicum of peace. You still have hobbies, chores, and your pets. Good for you. My dog and I are codependent on each other. Selling the farm must have been awful. Being the spouse of a PWP is hard. They have lost a lot of freedom and control of their own life, too. Sadly, it’s too much for some spouses. Hopefully, your relationship with your husband will become more satisfying. Let's stay in touch.

healthunlocked.com/parkinso...