Would you call this a step towards "r... - Parkinson's Movement

Parkinson's Movement
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Would you call this a step towards "recovery" from PD?

JerMan22
JerMan22

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.

113 Replies
oldestnewest

It is great that you have found what works for you. It is clear that you are much better as a result. Based on your account I would call your condition "stable" - and stable is plenty good enough. Be aware that celery seed extract can cause dystonia – muscle tightness.

JerMan22
JerMan22
in reply to park_bear

Thanks, bear. I followed the celery seed extract thread several months ago. It seemed to me that the dystonia reaction wasn't wide-spread but I will keep it in mind. I take 6 capsules a day and haven't had trouble.

Tmarsella
Tmarsella
in reply to JerMan22

Jerman, diagnosed 5 years ago I I too switched to Rytary at MY request. 4xdaily, several Mucuna capsules, B-1, D-3, B-12, LDN, CBD and others. Age 79. 2nd place in 50 m dash in SENIOR OLYMPICS 2 yrs ago. It works.

jimo2017
jimo2017
in reply to Tmarsella

wow the reading gets better a change from doom and gloom

bepo
bepo
in reply to Tmarsella

Fantastic!

JerMan22
JerMan22
in reply to Tmarsella

That's great! Glad you're doing so well. Keep on keeping on!

Hidden
Hidden

It is a long post, and maybe I missed a key part of your story but I see no evidence of any recovery. It seems like you got the proper dose of c/l and your quality of life improved. It is what millions of PWP do everyday.

JerMan22
JerMan22
in reply to Hidden

Thanks. I guess I'm just pleasantly surprised by the huge change in my condition from 7 years ago to today and that I can do what I do after nearly 12 years from dx. I thought by now I'd be in a wheelchair. I agree about getting the right dose and I'm hoping that exercise will continue to slow?/halt? my PD.

jimo2017
jimo2017
in reply to JerMan22

spoken like a champ

Hikoi
Hikoi
in reply to JerMan22

Jerman, i am 12 years too since diagnosis and people dont know I have pd when they meet me. I dont know anyone in a wheelchair because of PD. It is sad that people might think that is what lies ahead for them. Before levadopa life expectancy with PD was greatly reduced but not now. You have shown this too with your remarkable story.

JerMan22
JerMan22
in reply to Hikoi

Thank you, Hikoi. It helps to know that I'm not alone. I was (sort of still am) afraid of doing something wrong that triggers a slide down to where I used to be. I think I worry about it more because I did experience PD without meds for several miserable years. Others might not have that memory, so they are less driven. Can I ask if you do anything special? Exercise or unusual supplement? Thanks again.

Kitefli
Kitefli
in reply to JerMan22

I believe that our intentions/mind matters a lot. The choice is ours to work as if situ is going to get better or not. We don't have control to what will happen but we do have control over our actions and intentions now!!!

Keep exercising and other actions and keep pushing yourself, as much as you can. When we present brain with challenges, it rewires for the better use.

Wish you the best!

No Rytary and in fifteen minutes symptoms return. Won’t be happening if you have the correct dose of HDT thiamine hcl

JerMan22
JerMan22
in reply to RoyProp

I thought that B1 just helped a bit with tremors. Are you saying that if I find the "right" dose I can take less Rytary or less often?

RoyProp
RoyProp
in reply to JerMan22

You said when you stop Rytary....

chartist
chartist
in reply to JerMan22

B-1 has helped at least 30 members with tremor, but it is almost always in conjunction with some form of Levodopa including Mucuna. HDT/B-1 is not limited to just tremor improvements though. Here is a link to a list of 80 reported benefits by forum members :

healthunlocked.com/parkinso...

Art

Glad you are feeling good. The beginning of your story sounds a lot like mine. I'm 62, diagnosed 16 yrs ago, retired 6 yrs ago. Retiring in 2014 was the best thing for me in addition to starting Rock Steady Boxing in 2007. Retiring took away most of my stress & I was then able to box more. It doesn't sound like you are cured, but you're feeling much better & that's great. Since there is no cure, that's our ultimate goal at this point.

I have a couple of questions:

1. Did it take long to get to the right dosage of Rytary? A lot of people have said it does.

2. What dose of B1 are you on?

3. What other supplements are you on?

Thanks,

Debbie

JerMan22
JerMan22
in reply to laglag

Thanks. I looked into Rock Steady but the closest one is 65 miles away. I did just join a gym and I'll be playing racketball there 2-3 times a week.

I was so out of it when I got my first dose, just the fact that it gave me some relief was enough! I had nothing to compare it to. I was never on Sinemet or any other C/L med before that because it made things much worse. Looking back on it, though, I think the neurologist got it right the first time. He started me at 4 doses/day and I stayed at that for a year or so, then he increased it to 5/day. I started my walking efforts a few months after that. I've been pretty happy with Rytary.

I take 3 g of B1 a day. I used to take 4, but haven't noticed any difference between 3 and 4.

I take K-2, D3, B12, Fisetin, Vegan Omega-3, Tumeric, Ginger, Lutein.

Coling
Coling
in reply to JerMan22

Just great keep going

Great news! I was only diagnosed 2 years ago. You inspire me JerMan. Keep it up!

JerMan22
JerMan22
in reply to jimcaster

Thanks, I'll do my best. :)

I think if you would be able to identify your right dose of thiamine, you would be farther amazed... :)

JerMan22
JerMan22
in reply to dadcor

How so?

dadcor
dadcor
in reply to JerMan22

It takes an individual effort, but not just lazy following of a simple formal protocol.. Read carefully the materials about Dr C and thiamine here in this forum.. , and you will find your answer. :)

JerMan22
JerMan22
in reply to dadcor

Well, I was one of those who started HDT by emailing Dr C directly. He was so generous with his time and charged nothing. Following his guidance for a total of 3 months got me to a dose of 3g/day. I mention that I take B1 in a response I made to someone who wanted to know what supplements I took. The thing is, though, that I was already walking 3 miles a day and doing pretty well before HDT. I do give it credit for extending the time I've been able to go without dose increases. So, yes, I think every PwP should at least explore HDT, but I personally can't give it all the credit due to how I was doing before I started HDT. I hope this clears that up.

BTW, just so I'm clear, I consider being able to stay at 5 doses a day for over 5 years (with a brief exception) my biggest victory and one I'm holding onto as long as I can.

dadcor
dadcor
in reply to JerMan22

Actually I mean, we should not forget as the time goes by the daily dose need of thiamine does not remain constant, but varies. Even the dose is not necessarily supposed to permanently diminish.. This is the "problem".. The level is individual and everyone should work on it in order to enjoy the maximum effect..

Sounds all very positive. Love to hear these kind of stories. Hope it continues to go well.

Wow! Thank you for sharing your PD experience, JerMan22. It is very inspiring. I admire you for not giving up. My husband is 6 yrs older than you, but you were both diagnosed at the same time. I thought his golfing life is over when he started to experience freezing 4 mos. ago (indication of advance stage). Thank God, our daughter found out about mucuna. Before he started with mucuna, he was taking 2-1/2 (250 mg) of Sinemet every 2-1/2 hrs as he had frequent freezing and off times. Now he’s down to 1-1/2 Sinemet and 2 tbsp of mucuna every 3 hrs. Very positive results, no more off times and freezing, no more nightmares and constipation is disappearing. Soon, he will start taking B1 and hopefully he’ll get his golf life back better than ever. All the best to you JerMan22 and God bless!

Just curious... which brand of mucuna does he take? I don't take any PD meds yet. I've experimented with mucuna a little bit (Zandopa and one other) but with no results so far.

Hi! The name is Kapi Kacchu Seed Powder Mucuna Pruriens. It came from India, but packaged by Mond Trading Co., Toronto. We live in Canada. I actually find it expensive, but, it’s working. A bag of 454g is $65. Can.

Thanks! 😊

You are welcome!

One thing I've found to be very important is motivation. I've always loved to walk so that became my motivation. You can have a negative motivation, and it might work for awhile, but dire consequences become tedious and even depressing. A positive motivation can last much longer, because you get little rewards along the way. I didn't go from being nearly bedridden to sprinting in a day or even a few months, but there were other little victories. I hope this helps. Good luck!

Totally agree, thanks!

bepo
bepo
in reply to pdwife41yrs

Outstanding. From what I understand, there are no side effects from mucuna, including dyskinesia. My husband has never has never had any side effects from mucuna after 5 years.

bepo
bepo
in reply to pdwife41yrs

My husband takes magnesium to help with the constipation. After starting B1, he doesn't have constipation any more.

pdwife41yrs
pdwife41yrs
in reply to bepo

Hi bepo, happy to hear about B1. How much B1 your husband take? My husband will start tomorrow.

bepo
bepo
in reply to pdwife41yrs

It depends on the symptoms and length of time with PD to determine how much B1 is needed. My husband had a great pull test, has Parkinson's tremor on one side only. We started out at very high doses. Then, decided to go to lower doses. Many times on these different doses, his tremor has gone away completely from a few minutes to several hours. I think we're on the right track, and will continue experimenting with the dose until we get it right. Rigtht now, he is on 3mg in the morning of solgar, and 2 1/2 mg before lunch. Sometimes the problem is with him being compliant with his mucuna and amino acids therapy. So, we just do it for a few more days. What I have found is that when the symptoms get worse, you can stop and go with a lower dose. We also bought a powder form of B1 so he can adjust his dose in smaller increments.

pdwife41yrs
pdwife41yrs
in reply to bepo

Thank you!

Well JerMan, your story clearly illustrates the wonder that is levadopa. When you got the right dose it was miraculous the improvement from being nearly bed ridden to joining the human race again.

You are certainly not recovered because when you stop your meds your symptoms return. Im not sure why you would think you have a strange sort of pd, it sounds very normal to me.

At least one person on here goes on and on about the meds only treating symptoms. True but why would anyone deny themselves meds when it makes their life soooo much better as you have clearly found out.

Goodness me you are stable and well controlled on your current dose, i dont know why you would muck it up by trying to reduce meds.

JerMan22
JerMan22
in reply to Hikoi

I'm not currently reducing my meds. I did that only when my neurologist increased my Rytary by 20% and that induced some dyskinesia and dystonia. I simply went back to the previous dose and found other ways to deal with it, such as reducing my daily walks down from 3 miles/day to about half that. i hope to continue as I am for as long as possible.

It sounds to me like the exercise you are doing, any kind at all, is why you are better. My husband had a physical therapist coming out for awhile and he was better when he could keep up on it. He took Rytary 2 every 3.5 hours and it caused hallucinations, but it really helped him otherwise.

Thanks. Looking back on it all, there were a few things that I did that I believe have helped me at criticalpoints. 7 years ago, I very nearly gave up completely. If I had, I would definitely been in a very different place today. I encourage every PwP to do everything they can to keep going. Keep trying new things if they make any sense at all. If nothing else, exercise according to what the latest studies suggest is best.

bepo
bepo
in reply to JerMan22

Absolutely! Try new things. Try many of them simultaneously.

bepo
bepo
in reply to JerMan22

Yes!

Phew! It is difficult to remember all the things you have dine ans tried to do.

First, let me tell you what i tell everybody. No Pd medication does anything to SLOW DOWN THE PROGRESSION OF Pd. That means that you are still progressively worse all the time.

Second, don't do strenuouse exercise every day. Your muscles need time to recover after each session.

Rytary is probably the best Pd medication to take, other than an MAOb inhibitor. MAOb inhibitors stop the natural breakdown of the dopamine you already have in your brain, which helps Pd a lot.

I am convinced that FAST WALKING produces GDNF in the area of the brain that produces dopamine. GDNF stands for Glial Derived Neurotrophic Factor. Glial cells are the cells responsible for producing dopamine. Neurotrophic means nerve repair or replacement. That means that you have you very own repair kit in your brain, which repairs the damaged brain cells and produces more dopamine. I have been doing FAST WALKING since 1994 and have not needed to take any Pd medication since 2002. I have lived a normal life since then.

I still have constipation and a few other symptoms but manage very well.

There are far too many things to tell you about dealing with Pd, so why not look at my website reverseparkinsons.net and contact me. I will send you videos and articles to help you on your way. There is no cost involved.

MarionP
MarionP
in reply to JohnPepper

I can't encourage this fast walking enough, would be great to get a study or two behind it, more people would feel it can be more than just a one-off or insufficient science evidence to encourage large scale. Even a validly generalizeable single case report can be dismissed too easily, but I'm convinced more people should try it.

JohnPepper
JohnPepper
in reply to MarionP

Here are some studies done on Fast walking

selfhacked.com/blog/gdnf/

New study on benefits of fast walking (confirms John Pepper's protocol)

As published in HealthUnlocked Website September 2018

By Vivian Goldschmidt, MA

Fast or slow walking, which is better for your body and your bones?

In our instant-access world, some people long for a return to a slower pace. That’s understandable.

But there is one aspect of life in which faster is better: walking. Science has confirmed fast walking could add years to your life as well as life to your years — and even help reduce the risk of osteoporosis, heart disease, and dementia.

Beyond Bone Health: Walking for Your Heart and Mind

The benefits of fast walking are especially dramatic for older walkers. In a new study published in the British Journal of Sports Medicine, researchers from five universities found walkers 60 and older who strode at an average pace reduced their cardiovascular risk by 46 percent; fast walkers reduced their risk by 53 percent.

“Assuming our results reflect cause and effect, these analyses suggest that increasing walking pace may be a straightforward way for people to improve heart health and risk for premature mortality,” said Professor Emmanuel Stamatakis, the study’s lead author.

“Especially in situations when walking more isn’t possible due to time pressures or a less walking-friendly environment, walking faster may be a good option to get the heart rate up — one that most people can easily incorporate into their lives.”

The British study confirms what the National Walkers’ Health Study reported in 2013: a brisk walk beats jogging for health benefits while protecting older bones and joints from unnecessary stress. The National Walkers’ study was the first of its kind to demonstrate the health benefits of stepping lively over time.

Drawing from a large database maintained at the Lawrence Berkeley National Laboratory, scientists divided participants into four equal categories, based on pace. The fleet of foot enjoyed the greatest longevity. Strollers not only had a higher rate of death — they were more vulnerable to heart disease and dementia as causes of mortality.

If you’re a naturally slow walker, there’s a silver lining: an incremental increase in pace also reduces the risk of premature death. In the Berkeley study, walkers who were just a minute or so faster than the slowest group still experienced a significant uptick in longevity.

Synopsis

Fast walking can help improve heart health and reduce the risk of dementia and early death — and it’s an easy exercise routine to incorporate into your daily life.

How Walking Increases Bone Mineral Density

Another important benefit of fast walking is bone remodelling. Contrary to popular belief, bone is not solid, but is continually being rebuilt, or remodelled, at various sites throughout your skeleton.

In the first year of life, almost 100 percent of bone is remodelled as a baby grows. In adults, remodelling takes place at the rate of about ten percent per year.

However, lack of exercise, especially after menopause, can lead to bone loss. Weakened bones are more prone to breaking, often resulting in the dreaded hip fracture.

Walking can help prevent or forestall this crippling condition. The National Institutes of Health analysed the results of ten trials and found walking created “significant and positive effects” on bone mineral density of the femur (hip bone) in an older adult population, with walking programs that last longer than six months.

In other words: walk as if your life depends on it because it does.

Synopsis

Because bone building slows down after menopause, fast walking can help maintain bone mineral density, which in turn helps prevent hip fractures in older adults.

Do You Really Need 10,000 Steps?

If fast walking is one of the keys to healthy aging and building better bones, does that mean more is better? Step counters and advertising would have us believe 10,000 steps is some magical mobility goal. But this figure is more myth than magic.

10,000 steps equal somewhere between four and five miles, depending on your stride. That’s a lot of walking in a day, even for a younger person, and may be too ambitious for some seniors.

Basically, how you walk is as important as the amount of walking you do. Leisurely climbing the stairs, ambling along on the treadmill, or wandering casually down the block will all have a negligible effect on your health and bones; the goal is focused, fast walking that raises your heart rate and has you breaking a sweat.

Synopsis

The number of steps you take isn’t nearly as important as starting and maintaining a focused fitness program that includes regular fast walking to raise your heart rate.

Other Benefits of Fast Walking

Aside from postponing death, building healthy bones, and helping you to better overall health and fitness, walking saves your brain. It helps you:

Concentrate

Remain calm

Sleep better

Activate creativity

Reflect and regenerate (when you walk in nature)

For optimal wellbeing, walking should be placed in the context of a complete healthy lifestyle program that supports sustainable exercise.

Synopsis

Walking is an all-around body benefit, boosting mood and mental activity as well as bone health.

9 Tips for Smart, Safe, Swift Walking

While walking is second nature, fast walking for health requires a different degree of attention. Follow these nine tips for safe, effective speed walking:

Start with a stretch. Be sure to warm up with a gentle walk and, some light stretches (to the degree you’re able) before embarking on your fast walk.

Pay attention to posture. Your grandmother may have reminded you to stand up straight, and it’s the best advice for fast walking, too. Head up, shoulders back, and walk tall with your eyes forward.

Relax your shoulders. Hunching causes your body unnecessary strain. Relax — walking is meant to be a fun, natural workout.

Engage your arms. Swinging your arms from side to side, keeping them slightly bent, makes walking a whole body exercise. The motion will also help increase your speed, like a tailwind.

Breathe naturally. Some people unconsciously hold their breath when they exercise. The deeper you breathe, the more oxygen circulates through your body, and the more invigorated you’ll feel.

Make it a habit. Schedule your walk just as you would any other appointment. Choose a time of day that suits your natural rhythm. Morning people may prefer to start their day with exercise; a night owl might groan and roll over in bed. Pick a set time, and stick with it.

Build up your walking time gradually. Remember, it’s not the number of steps, but consistency and pace that will reap the most benefit. If you can fast-walk for 20 to 30 minutes a day, at least three times a week, that’s a good goal.

Wear walking shoes that fit. You don’t want blisters or pain to derail your efforts. Visit an athletic shoe store and ask a knowledgeable salesperson to help you select the right shoes for your age, gait, and comfort level.

Congratulate yourself. You’ve created a good habit to keep you healthy and build your bones that will serve you well for the rest of your life.

Synopsis

Warm up, relax, breathe, wear walking shoes that fit, and enjoy your fast walking routine — it’s one of the best new habits you can start.

Walking Works At Any Age

Exercise is a sound investment, even if you’re well into your senior years. Beginning a fast walking routine can help you build your bones, and stay healthy and mobile longer. Frail, formerly sedentary elders have improved their bone health and fitness significantly via an exercise program that included daily walks, balance and strength training.

You’re never too old to walk. Picking up the pace is a natural way to improve your bone health and have a long, healthy life.

More Information

verywellfit.com/how-fast-is...

bjsm.bmj.com/content/52/12/761

MarionP
MarionP
in reply to JohnPepper

Very good and thanks, this should encourage everyone to do what they can do

JerMan22
JerMan22
in reply to MarionP

Here's a study specifically addressing walking at speed for PwP. jamanetwork.com/journals/ja...

bepo
bepo
in reply to JohnPepper

Magnesium for constipation? Are you taking B1?

fantastic post very encouraging i will certainly be asking about rytary

We cannot buy this in the Uk. Any recommendations as to where we could buy it and be shipped to UK?

Not so fast. I have been on Rytary since April of last year and I am still not getting even a portion of the benefits touted here. There are other forum members that also been disappointed.

Finally, unless you are rich or have insurance, this medication is ridiculously expensive for the benefit that is mostly elusive.

JerMan22
JerMan22
in reply to pdpatient

I've almost never paid for Rytary precisely because I'm not wealthy. There are 2 charitable foundations in the US that you can apply to. I've been accepted by both at different times. They pay the remainder of your cost after insurance (they'll pay it all if no ins). It's based on income, not property, so owning my own home wasn't a problem. Also, Kaiser has a program to help if you have insurance through them.

One is the PAN Foundation. I've used them the most. I'll have to do some digging to find the other one. panfoundation.org/index.php...

Good luck!

pdpatient
pdpatient
in reply to JerMan22

Thanks for the information jerman22

I'm afraid that I know nothing about getting Rytary in the UK. Sorry!

"I am still not getting even a portion of the benefits touted here. There are other forum members that also been disappointed." Thanks, pdpatient, for bringing this up. It was the main reason I was bringing the question up that I asked in the initial post: "is my PD strange"?

Several people who've responded have said things like: "that's not so strange; this is what we're all doing" or "millions of PWP are doing the same thing". I'm not so sure. To start with, the usual Sinemet medicine made me sick as a dog. A particularly sick dog at that. Why? Nobody could ever tell me. Then, a year later when I got on Rytary, it was like magic, yet I've heard about others who've been hugely disappointed. Why? Nobody seems to know, not even my neurologist.

Secondly, most of my interactions with PwP have been online on forums like this one, and these are definitely NOT representative of PwP as a whole. I suspect that a vast majority of us just fall through the cracks due to the general lack of knowledge that surrounds PD. 7 years ago, I was slipping through the cracks myself, and I would've fallen all the way through if I'd had different reactions to Sinemet vs Rytary, or gone a different way with my diet, for example.

And then there are people like JohnPepper (see above) who seem to do fine with no meds accept a MAOb inhibitor (or, I guess there's more than just him?) But his results don't fit with what my experience has been. It just seems as though, with so many PwP taking so many drugs for so long, the doctors should understand it better than they do.

I personally doubt that more than a few hundred or a few thousand are doing what I'm doing. Maybe, but I have no proof of that. I base it mostly on my neurologist's reactions. To paraphrase: "I've never seen anyone who's had PD as long as you walk as well as you do." And I didn't have the guts to tell her about jogging, sprinting, and all the rest!

I've written it once, but I'll write it again: "7 years ago, I very nearly gave up completely. If I had, I would definitely be in a very different place today. I encourage every PwP to do everything they can to keep going. Keep trying new things if they make any sense at all." I think that 2 of those things were my strictly vegan WFPB diet and HDT, but I could be wrong. Where are all the researchers looking into this disparity in results?

pdpatient
pdpatient
in reply to JerMan22

Well, the Gods are certainly smiling on you. Yes you are truly blessed.

JerMan22
JerMan22
in reply to pdpatient

i can't tell if you're being sarcastic or not. If those Gods are listening, is it too late for me to get the unblessed version of life in which I never get PD? :)

In any case, I'll take this version as long as it lasts.

pdpatient
pdpatient
in reply to JerMan22

Jerman22, I am not being sarcastic. PD suffering is the worst kind there is and any good thing is a blessing. Sorry if I came across that way, I did not mean to.

bepo
bepo
in reply to JerMan22

I think if you use meat as a condiment, or very little of it and go mostly with an organic, non GMO plant based diet, that can improve lots of ailments.

pdpatient
pdpatient
in reply to JerMan22

Hi Jerman22. Can you please let us know more details about you dosage protocol such as what strength, how many pills and how many times a day and time intervals?

Also , please let us in how and when you eat and what you eat.

If you are getting such amazing benefits from Rytary, I would love to learn from you and attempt to replied you're results. Maybe I am just doing something wrong.

JerMan22
JerMan22
in reply to pdpatient

Keep in mind that everyone's PD is apparently different, so what works for me...

I mostly take the 61.25 mg - 245 mg Rytary capsules. I do also have some 23.75 mg - 95 mg capsules, which I sometimes take if I'm having trouble staying asleep all night. Otherwise, my dosing schedule is: one 245 mg capsule at 8 am, 12 noon, 4 pm, 8 pm, and midnight.

I usually go to bed around 11 pm, but stay awake reading, or close my eyes and rest until midnight and take my last dose. Then I sleep until 8 am with 3 or so bathroom breaks. I've found that if I don't turn on lights I can slip back into bed and get back to sleep pretty easily. If not, I take one of the smaller Rytary.

I also take B1 (3 grams spread out over the day), 3nB (celery seed extract) and a probiotic with bacillus subtilis and a few other supplements which I've listed elsewhere in this discussion.

I try not to push my diet on anybody, but since you asked...

I eat WFPB (whole food plant based), which is vegan (no meat dairy, eggs, etc) with no refined sugar or oils. Specifically, I eat lots of fruit and veggies, especially green leafy salads, berries, some nuts, avocados, sweet potatoes, beans, lentils, whole grains (mostly oats) and almost anything that's minimally processed. I do eat bread but it's whole grain, sprouted, with no oils or sugars. I make a lot of food with my instant pot (pressure cooker) because it frees up the nutrients.

First thing in the morning, I drink a glass of water with my first dose, then immediately go outside and fast-walk up a hill. Getting out into the sun at least 3 times a day helps reset my internal rhythms. If it's rainy I walk on my treadmill. I almost always go for 2 to 3 more vigorous walks ( each 1/4 to 1/2 miles every day. I also belong to a gym and do various things there 2-3 times a week. Not every day is a good day, but they are more often than not, and the bad days aren't really so bad.

pdpatient
pdpatient
in reply to JerMan22

Thanks for the info. Much appreciated.

rideabike
rideabike
in reply to JerMan22

Many don't realize the benefits of proper diet and esp. plant diet. I always feel much better on plants and I know I should stick to it. People have turned around other diseases being on it as well. It does help to have a partner who is on it too. I have a bad knee and cannot fast walk but any walking always puts me in a better mood. I'm aiming for every day 1/2 hour. Thanks so much for your encouraging post!!

rideabike
rideabike
in reply to rideabike

Also Sinemet made me sick every time I tried it. Mucuna Pruriens doesn't and works just as well.

bepo
bepo
in reply to rideabike

Great for you! For your knee, look for a doctor who practices prolozone therapy. It helps regrow cartilage. You may only need one injection. Learn about it!

rideabike
rideabike
in reply to bepo

Thanks for the tip. I will look into it. Today I walked close to 4 km. Didn't quite make 4 but it was a great day for walking...took lots of MSM capsules and L-lysine after and rubbed in anti-inflammatory. It's the furthest I've gone in awhile so a fix for the cartilage in torn meniscus would sure help.

bepo
bepo
in reply to rideabike

I , personally, have two bad knees. I was an athelete. Dr. Frank Shallenberger, the father of prolozone therapy, told me I needed knee replacements, or long term prolozone injections. I am resisting knee replacements, and continuing to get prolozone injections and, I exercise. You might get immediate relief from prolozone injections. They cost anywhere from $100.00 to $200.00 per injection. There might be a doctor near you who does this therapy.

rideabike
rideabike
in reply to bepo

I had one knee replaced and without it I wouldn't be walking at all but I won't be getting the other one done if I can help it. I did look into the Prolozone injections and the doctors are not local. I can't ride a bike because of a baker's cyst behind my 'good' knee that fills up. Maybe a shot would heal that.

bepo
bepo
in reply to rideabike

I had a baker's cyst behind both knees, which indicate problems with the knees. The cysts on my right knee are mostly gone. Prolozone helps. Biking is great exercise. Can you still ride?

MarionP
MarionP
in reply to rideabike

This relief from going vegetarian or even vegan does seem to be a common thread in my reading of health issues, and yes that has included PD.

JerMan22
JerMan22
in reply to MarionP

I found this video to be eye opening. It's about treating the basic triggers or root causes rather than symptoms:

And this one is specifically about vegan diet's effects on PD:

“It just seems as though, with so many PwP taking so many drugs for so long, the doctors should understand it better than they do.”

Indeed. But they do not. And that is precisely why PwP and/or their caregivers need to be very much informed as to the options available - pharmaceuticals and supplements - for treatment.

‘...strictly vegan WFPB diet.’ Diet is critical. It should be one that ‘wages war’ on sugars, refined carbs and seed oils - the so called ‘vegetable oil’. It will work wonders, as you have found.

The third leg of the stool is exercise. And we have a ‘ton load’ of scientific papers referenced here on HU. And of course the irrepressible JohnPepper .

With the rise of the Internet and patient-to-patient interaction we may see less of the fatalistic expectations as displayed by your neurologist. Case in point, my spouse neurologist encouraged her to get into the public health system so it would involve less red tape should it become necessary to claim disability benefits.

Very practical guy. At least he recommends exercise. Very vague on diet: ‘eat healthy’. And looks askance at the world of supplementation.

You have found your three legged stool. You experience shows that if you get these things right then the disease is manageable: pharmaceuticals/supplements, diet, exercise.

My limited understanding of this ailment - two years as a caregiver - suggest to me that you have the right approach.

Thanks for giving me your viewpoint. Seeing it from a different angle helps me.

Hikoi
Hikoi
in reply to CaseyInsights

Well Casey, you can follow a man John P, who was shunned by his own society in Sth Africa as they said he didn't have pd, told by the last neurologist he saw that he doesn't have idiopathic pd, has not got one other person to reverse their pd in the many many years he has been prosletysing and the list goes on and on. Personally I would check out his advice.

I don't think it is right to blame doctors generally in PD. This is a highly complicated, heterogeneous expression that greatly defeats many many efforts and assumptions that wish to generalize the condition and simplify collective responses and treatments... All experiences should be regarded as individualized and unique to some extent, usually a very significant extent. Just not fair I think, and often incorrect reasoning. Errors in patients' reasoning about genrralizing and some imagined homeogeneous population is to be expected, anticipated, and accepted. Exceptions are part of the rule and should surprise no one. Should not all be blamed on practitioners as much as they are.

bepo
bepo
in reply to MarionP

All those with PD are the only one with their PD. Each one is different.

bepo
bepo
in reply to CaseyInsights

My husband is not on any pharmaceuticals, and is keeping his PD steady. We don't believe in most pharmaceuticals. They keep you alive just long enough. The whole goal of pharmaceuticals is the profit motive, not cure. He takes the natural form of mucuna along with amino acids. Now, we are practicing another, non invasive treatment, B1.

Hikoi
Hikoi
in reply to JerMan22

“To start with, the usual Sinemet medicine made me sick as a dog. A particularly sick dog at that. Why? Nobody could ever tell me. “ Levadopa in Sinemet is known to make people sick. Many posters here will tell you and some even take regular domperidone to stop the nausea. As to differing reactions to different drugs ie some dont like Rytary, it isnt so surprising, we all have very different metabolisms and different tolerance levels to meds. You were med free when you tried Rytary. That is a completely different experience from someone changing meds. As to your neurologists encouraging comment, he sounds like he hasnt met many with pd!

Excellent you are doing so well. I just dont think you are alone in this, many of my friends are past 10 years diagnosed and still very active.

Just saw Bayley Texas write this on another thread. Amazing.

“I am 66 have had PD for 14 years and i an still going strong. I built a a new home last year and i mean i built it ( the house part some one else did the metal building) with my own two hands. move on 1/16/2019. .....The living area is 11 hundred sq feet and a 1900 sq ft shop and 2000 sq ft loft.”

So what is the actual difference between sinemet and rytary? Google is not giving a clear explanation.

Hidden
Hidden
in reply to ion_ion

Rytary has instantaneous release c/l and two types of extended release c/l formulations. It also has Tartaric Acid which is described I the patent as follows:

“A significant aspect of the invention relates to the unex

pected discovery of the effect of carboxylic acid, in control

ling the absorption of LD such that the resulting formula

tions yield tighter, i.e. steadier, LD plasma concentrations."

and

"A significant aspect of the

invention relates to the unexpected discovery of the effect of

acids, as defined herein, in enhancing the bioavailability of

LD."

Hidden
Hidden
in reply to Hidden

Note tartaric acid is cheap and readily available. I will be testing it soon to see what benefit it has when taken at the same time as plain old c/l IR and c/l CR. And I encourage others try it as well.

parkie13
parkie13
in reply to Hidden

How much tartaric acid are you going to start with?

Hidden
Hidden
in reply to parkie13

I am trying to determine what a safe amount is...

The only clue that I have so far is from the 1964 Joint FAO/WHO Expert Committee on Food Additives:

inchem.org/documents/jecfa/...

The total daily intake of tartrate should not exceed:

mg/kg body-weight

Unconditional acceptance 0-6

Conditional acceptance 6-20

I am envious of you and your remarkable success and plan to emulate you somewhat. I was diagnosed with PD 17 years ago and have deteriorated slowly to the condition I find myself in today. I went through all the meds and commonly saw a brief improvement but continued a slow degeneration until I could no longer walk as the PD had robbed me of all balance and I am now confined to a wheelchair. I switched to rytary several months ago ---both regular and continuous release. I take 2 rytary at 7:30 am and that lasts until 11:30 when I take 2 of the cr rytary which lasts until 3:30 when I take my last 2 rytary of the day. I do not have a dyskinesia problem as of this writing--some feeling of fatigue and sleep problems. I exercise sporadically ------3 to5 times per week. I have not altered my diet whatsoever.I plan to show her your post and get her thoughts on it so I might write you again if you do not mind.

Dajudge Sam Johnston

JerMan22
JerMan22
in reply to Dajudge

I don't mind at all. Let me know if I can help. In my experience, ridding myself of saturated fat and refined oils and refined sugar was what got me through. I went from having no energy to having enough to get started, and it didn't take long; maybe a week. You can send me a private message if you want to, or we can talk more here.

Dajudge
Dajudge
in reply to JerMan22

You are very kind----I would prefer a private chat if possible---how do you accomplish this?

JSJ

JerMan22
JerMan22
in reply to Dajudge

I've started a chat for us. Just go to the top left and tap/click on "Chat" then choose the one I just sent you.

parkie13
parkie13
in reply to Dajudge

Did you try thiamine HCL the B1 vitamin? It did wonders for me.

JerMan22
JerMan22
in reply to parkie13

I believe that it has helped me too, though I can't prove it.

parkie13
parkie13
in reply to JerMan22

My balance was really bad. I could not even turn around in bed. I had a definite Improvement.

Dajudge
Dajudge
in reply to parkie13

I have been taking the HCL B1 for several months with no apparent change or improvement.

JSJ

parkie13
parkie13
in reply to Dajudge

No one knows why but some people do not respond to it. How much are you taking and how many times a day?

bepo
bepo
in reply to Dajudge

What dose? How often do you take it? Keep experimenting with the dose after several days.

bepo
bepo
in reply to Dajudge

What about B1. B1 has given back the ability to walk and perform bodily functions, to a bed ridden man in Italy, as is shown on this site. Read everything you can about Parkinson's and B1 on this site. Hopefully, this inexpensive supplement will help you with your symptoms and halt the progression.

You are in a normal phase and extremely fortunate to have found such a good INDIVIDUALIZED response to Rytary, which not everyone finds. Also, staying with vigorous walking as long as you can seems to confer a good benefit in holding globally your symptoms at bay. This is as good as it gets and your use of HDT could, like the walking, help keep you in the sweet spot the longer you use it.

A good analogy is that of having a new internal combustion vehicle and trying to keep it running well for as long as you can. You are in that middle of three stages of a motor's lifetime wearing, the longest and smoothest, but near the end and on the cusp of the third, rapid-wear \ performance steep decline curve, and you want to stay at that place...luckily you seem to have hit the trifecta. Many others of us will be happily envious.

Beware the known side effect tendency of Rytary to associate with, perhaps induce, unnecessary risk-taking behavior, a form of impulse-control problem or a form of mild but potentially very destructive euphoria that can come with the antidepressant effect of having more dopamine and a bit more epinephrine and norepinephrine in your brain.

JerMan22
JerMan22
in reply to MarionP

Thanks for the input and advice. I've heard the "engine" metaphor before, but in a slightly different way. I'll try to find it again and post it.

MarionP
MarionP
in reply to JerMan22

No need, it was for your benefit, you were the one asking for feedback.

Dear JerMan Thank you for sharing. Very helpful indeed. May I ask where are you based?

JerMan22
JerMan22
in reply to Bianhua

A few hours east San Francisco.

What are the effects of taking ryatary

JerMan22
JerMan22
in reply to chas747

Sorry, this slipped by me. Rytary is basically time released C/L. So you take it at, say. noon and some gets released immediately, some in an hour so, etc. Same basic function as Sinemet or any other C/L med.

Hi jerman22 have you ever considered dbs surgery

JerMan22
JerMan22
in reply to hindle1245

No, that sounds very radical to me. Maybe if my condition deteriorates I would consider it. Thanks for the question. Do you have experience with dbs?

I believe improvement and or stabilizing is possible for some PWP.

My worst years were 2 and 3, with tons of symptoms making my world very small. Now at just over 5 years life is near normal, I do everything and go everywhere most of the time. I have a full schedule which I can handle well once again. I’m also able to engage in complex situations at work. My remaining symptoms (gait, bradykinsa, tremor) have become mild and intermittent. I attribute all of this to B1 and Dr. Joe Dispenza’s work which has provided me skills to improve my well being. WHO’S DR. JOE...he wrote the book “you are the Placebo”.

As an example , if you’re riding a bike and you put your attention on the rock ahead in the middle of the road you will most certainly hit that rock because that’s where your attention was. Same with your symptoms, if you watch the clock and know when your symptoms are supposed to appear as your meds wear off and your attention is on symptoms and determining if they’re getting worse, guess what, they’ll appear and be worse. Where you place your attention is where you place your energy, so instead of giving your energy away to your symptoms learn the skills to use your energy for your health and well being. It works, if you do the work!

Constance

JerMan22
JerMan22
in reply to Cons10s

I've heard about this, and I meant to follow up, but that darn rock distracted me! Seriously, I think this might explain many things. I'm going to look deeper into this. Thanks!

Cons10s
Cons10s
in reply to JerMan22

JerMan22

Here’s Dr. Joe’s Channel on YouTube. youtube.com/channel/UCybtEr...

I listen to him in the car everyday. It’s amazing!

I’m sure about the rock analogy. I was a cyclist for 20 years. Interesting I’m thinking I may pull my bike out this summer and dust it off.

JerMan22
JerMan22
in reply to Cons10s

Thanks, Cons10s. To anyone who's thinking "That's blaming PwP for having PD" let me just offer this advice: Be open to any idea that might move you in the direction of dealing with PD better. This particular idea fits with some of the things I've noticed. For example, when I used to have mild dystonia in my right foot, if I could take my attention off of it, or just change things up by wearing flip-flops, it would go away for awhile. That doesn't mean that we can all fix everything this way or that negative expectations are the root cause of PD, but it might help a little or might help a lot. Worth looking into.

You developed a good program for yourself JerMan. Nice work. Exercise diet, nutrition, sleep, stress reduction. What I call the “5 pillars”. Along with proper dosing of C/L. Every day. One day at a time. Be well - JG

You are not recovering from PD you are jut controlling it well. Rytary if you do not know is just carbadopa levadopa with a differant way to deliver it. I was just offered to become a test subject for a new type of Rytary that last even longer.

It seems changing your diet allowed you to fill your nutrition gap, improved the homocysteine by finding a better balance in B6 and folate (from vegs, and I hope you supplement b12 now) and improved the zinc/copper balance from food. Cutting out sugar, improved detox (fibers) and exercise always helps. Since you seem to be doing much better with the vegan diet (not for everyone), it is possible that you were experiencing over methylation problem with the prior diet. I recommend you read the below book to help gain additional insight.

amazon.com/gp/product/B00J7...

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