My purpose in writing this is to get feedback on whether my experiences are similar to anyone else's and to get your opinion about where I stand now and where I might be going. I'm not claiming to be recovered, but if you read the rest of this rather long post, you'll see that my condition has improved in almost every way. But is it a step towards "recovery" or just that I've stopped doing some things that were making me unnecessarily miserable? Or that I'm taking better meds? Do I have a strange version of PD? I would really appreciate any opinion and will answer almost any question. I really want to understand what's going on.
My basic info: Male, 62, dx almost 12 years ago. I worked another 3 years after dx and exercised quite a lot even back then - mostly walking fast and riding a bike, but also some gym stuff. During the 8 years before my dx (and 3 more years after dx), I had a very, very stressful career as a software developer and manager. After I retired at 54 due to PD, I was eventually able to get disability payments and my stress level is pretty low now. I had just refinanced my house to a low rate and as long as we watch our budget and rent out an extra bedroom, my wife and I have enough to get by.
Longer version of my story: When I "retired" about 8 years ago, I wasn't on any meds at all. I'd seen 2 neurologists who had evaluated me based on observed symptoms but took no scans or tests other than having me walk and write. During the 3 years that I worked knowing I had PD, my neurologists gave me several meds to try, but they all caused more severe symptoms, so I stopped them. By then, my PD symptoms were becoming more pronounced.
About 7 years ago, I "retired" and got on Medicare so I switched neurologists again. By then, it was difficult to drive and I remember constant physical pain and tremors. My list of symptoms was long and included all of the usual, including loss of motor skills, inability to walk without lunging around to hold onto things, severe muscle soreness and pain, sleeplessness, constipation, tremors, mental confusion and poor memory. I was pretty miserable. My new neurologist was the first to give me Sinemet. I tried taking it but had a severe response (severe queasiness, sleepiness,inability to focus, etc.) She tried lowering the dose to very small amounts but to no avail. She retired and I gave up trying to find any medication that would work for me. Apathy had set in.
One miserable year later, my symptoms had continued to worsen. Nearly bed-ridden now, my wife took me to a movement specialist. Some of what he did helped a little, but it was expensive and I had to stop. During my last session, he gave me contact info for another neurologist. This one looked me over for 2 minutes, asked a few questions, and prescribed a newly available med called Rytary. Within a few days, many of my PD symptoms were much, much better (I could walk without lunging for a railing or chair). I still had constipation, muscle soreness, and tremors, lack of energy, etc. but much of it felt so much better and I regained hope. For about 2 years after that, I slowly got back some of my strength and my attitude improved. 5 years ago I decided to try to exercise again.
I remember going outside and willing myself to walk just 20 feet up a small hill near my house. We live in the country so I didn't have to worry about looking strange to anyone passing by (few do) but I did worry about falling over. I walked maybe 10 feet and completely ran out of energy. I had to sit down in the road and, once I had energy again, stumbled back to the house.
Walking has always been special to me; one of my favorite memories is walking home from school everyday since I was 5. I had a paper route that I walked from 10 to 16 years old. I was also a postal carrier for a year before going to college, and I've always walked or biked everywhere I could. So I was determined to walk - really walk, not hobble a few feet. Every day for a month I went out and tried, but couldn't get much further.
Then I changed my diet. My wife had been vegetarian for over 30 years but I'd resisted. I simply liked meat too much. But I liked walking more. I had a vague idea that cutting out saturated fat might give me more energy, so I researched it. I don't intend to try to talk anyone into going vegan; I'm just relating what happened for me when I did. Within a week after switching to what's called WFPB (whole food - no refined sugars or oils, plant-based) I had enough energy to walk -slowly at first - up that hill and back down (about 1/4 mile). A month later I was up to a mile at a time. Within 3 months, I was walking much faster and averaging 3 miles a day. It sounds good, yes, but it was far from easy. My gate wasn't the best and I dragged my right foot along more than walked on it. I discovered tricks, such as bouncing a tennis ball or swinging my arms in different ways. I know this might be different for others, but for me, anything that changed my walk, helped to keep me going (music with a fast beat helps too). Many of my symptoms, which had gotten better with Rytary, got even better, though I still had quite a lot of tremors, constipation and difficulty sleeping.
I had to still take my Rytary or the symptoms would come roaring back, but I hadn't increased my Rytary dose for over 2 years, I was walking 3 miles/day, and felt much better. About a year or so ago, I began taking HDT (high dose thiamine aka B1) and that might've helped even more. My tremors, constipation and sleep all improved somewhat. My motor skills improved (I used to be a good typist, and now I am again). Even my sense of smell came back off and on.
One day, as I walked, a crazy idea popped into my head. Some days I felt better than others, and that day I happened to be walking in a nearby park. It's a very natural park with few improvements, and its paths are twisty with roots and uneven dirt. But I had the urge to sprint through it as fast as I could. I probably shouldn't have done it, and nobody 60+ years old with PD for 10+ years should do it, but I did. Now, very often I sprint like an idiot (though there are times when I still don't feel that I can, so I don't), and there have been other crazy things too. I can now also spin around as I walk or jog. I can jog backwards or skip like a little kid (though not at the same time). I've never fallen down on any of my walks, partly because I do a "gut check" before I do any of that crazy stuff. I also don't do any crazy stuff on rocks or cement. My balance and gate are nearly perfect now, and when I'm in my "groove" I don't have to think much about what I'm going to do - I just do it. And yet, if I miss a dose of Rytary by even 15 minutes, my PD symptoms come right back.
About 10 months ago, I started running out of energy again. Sometimes I'd be out for a walk and could barely make it home. I talked to my neurologist, who increased my Rytary by 20% (from 5 to 6 a day). That helped with the energy but I began experiencing mild dyskinesia and dystonia. My neurologist wanted to put me on one of the drugs I'd tried so long ago and had given me bad side-effects. I was only taking Rytary (no other prescription meds of any kind) so I said "no thanks". I did some reading and tried a few other things, hoping to find a solution. I started by going back to 5 doses a day. Reducing back down is hard (I'd been on 6/day for a few months) but I did it. I've cut back my walks and now average 1 1/2 miles a day. That's helped. I'm now also taking celery seed extract (3nB) and probiotic with Bacillus subtilis, and those might be helping. I take a few other supplements that might be helping a little. I've recently been focusing on getting more and better sleep, and that's helped quite a bit.
OK that's pretty much it, although I'm sure I could go on and on. Please post your reactions and opinions. Is it just that I'm taking Rytary and I've improved over the miserable condition I'd been in because of that? Am I just hanging onto the last good bits of time before I have to start taking more/different meds? Thanks for reading this far. Sorry for being so long-winded.