Have you stopped or really slowed down your progression? If so, what are you doing? And please be specific if you would. Like how many hours are you exercising per week and how high do you get your heart rate. What diet and supplements are you on, etc?
Thanks for any help you can give. I know PD is individual, but I want to learn as much as I can.
I'm 18 years post-diagnosis and still doing well (for instance I often walk 10 miles). So, I suppose I must be doing something right. There was a period from 3 years to 16 years post diagnosis where things (not the underlying disease, but my ability to cope with it) actually got better. However, in the last couple of years things have got worse.
I put the 3 to 16 year improvement down to:
- luck. I've probably got a slowly progressing strain of PD;
- good family life;
- lots of walking;
- learning about the disease. For instance, you should know what pharmacokinetics is and how it relates to PD;
- building apps to measure my progression, e.g. side to side tap test;
- building tools to reduce symptoms, e.g. to deliver an enema.
I put the recent decline to a lack of new tools to reduce the symptoms.
John
Hello John, I heard somewhere that if you're not too young and not too old at your PD onset (ie early 50s), then your progression will likely (though not always) be minimal. So what age group are you? Thanks
Diagnosed at 49. Now 68.
Statistically you fit in the lower boundary for minimal progression, according to this theory (came across it quite a ago). But its a very loose theory as there're many other factors at play here. Thank you
I was 52 . I have never heard of this but that's good news!
How old are you now and how has it be going for you?
I'm going to be 54 in 2 weeks. I'm better off mentally than last year. I'm more positive. My walking is faster and my gait is very good because I fast walk 3 times a week for an hour. I feel as though my mind is a little sharper, I would attribute that to CDP Choline. My energy is better I believe because of b1-therapy 50 mg 3xs. per week. I work on balance alot with standing on one leg and doing a side bend and touching the floor or whatever I can to challenge myself. I do Tai Chi 2xs a week with Jake Mace on you tube and pilates with Jessica Vallant on you tube. I also lift weights twice a week. What I have not seen improvement in and is a little worse is shaking in my shoulders. It's mostly action tremor but occasionally resting. I have to be very careful of getting anxious or overwhelmed.
Hi Hope-full1970I'm was wondering how your energy levels are after doing physical exercises? Does doing exercise give you more energy or are you too tired to do much else for the rest of the day? I'm 54 now and been diagnosed 12 yrs ago. My energy levels are very low and feel pretty tired alot of the time.
Thanks Marcus
I noticed an energy increase with the b1 within the first week. At the same time I started the fast walking for 1 hour 3 times a week. I was wiped out after at first. I felt like ìt was taking energy I couldn't afford to give. Over time my energy has evened out and my energy is more consistent throughout the day. I recently walked on the treadmill 3 miles and then a few hours later I went on a hike with my family 2 miles and wasn't tired all day. I was there. Tired all of the time. I believe exercise will help you. Make sure you are taking in good nutrition and have protein and carbs when you workout.
Grumpy77 - Do you know where you heard that slow progression thing for early 50s?
It was like 3 or 4 years ago during a random search, didn't think too of it then. I've not been able to track it down again yet
Have a look at my homepage. i have a very good progress and there are even some improvements!
Hello Tom 👋🏾. Thank you for sharing your homepage here and for the great info. From your video I can see that you're doing very well. I could also see that you have very good arm swing on both sides..you're also brisk and sharp, So I'm surprised a neurologist diagnosed you with PD all
Mosts guys I know who’ve achieved anything fast a lot.
Fast as in skipping meals regularly?
The key appears to be autophagy which generally means no food for 16? hours, then the body starts to clean up the aggregated proteins and dead cells.
How are you doing otherwise, jeeves19
The dbs was slightly disappointing PD. It rid me of my dreaded dystonia but I still have off periods and I fight a constant battle against bradykinesia. Other than that I’m doing ok for a 9 year in PWP. Thanks for asking. How are you?
I have good days to bad days and very bad days. All kind of random. I have been following you closely to see if you experience anything that would help me reevaluate my decision.
Sometimes I just feel like I want to give up. I found out yesterday after meeting with my doctor that medically assisted death is legal in California. The doctor was nonchalant about it and acknowledged that Parkinson's is difficult to live with and offered to introduce me to the assisting doctor 😳🙄🤔
What works for me - High Dose Thiamine (B1) and exercise. I recommend Dap1948 's book and her Facebook Group. B1 has done wonders for me...
amazon.com/gp/product/B09TZ...
facebook.com/groups/parkins...
isn’t high-dose thiamine the protocol developed by Dr. Constantini rather than Daphne Bryan’s lower dose, sublingual treatment?
I don't know enough to go into depth, but I feel like the B1 therapy was a miracle, took away about 70% of symptoms, and now have had some further improvements drinking Aloe Vera juice.
Yes, the progression has stopped and even decreased. My situation is approximately similar to the official diagnosis exactly 3 years ago. Still relatively short, I know, but I think it's good to share the rollercoaster I ended up in here because it might provide others with guidance and hope.
After a year and a half, there was a low point. Not a honeymoon, but in a relatively short time, the maximum dosage of C/L was no longer sufficient and at the same time, a severe peripheral neuropathy (PN) developed. I didn't want to let this happen passively. Through my introduction to CP, I was able to take matters into my own hands and it turned out that the underlying cause of the deterioration was a severe vitamin B6 deficiency.
> Do not passively follow the advice of your neurologist, be critical, you are the first to see what is not normal,
> Do self-study and self-examination
> Look for connections, such as a B6 deficiency that occurs in PD and PN.
After a month an "awakening" happened with a halving of my C/L medication and a reduction in almost all symptoms. There was a certain dip again last winter, especially noticeable in my PN. What turned out to be the case? There was now an overdose of B6 with similar symptoms as a deficiency.
> Take all medications and supplements in moderation, "if it doesn't help, it won't harm" does not exist! Even too much water is harmful.
> Have your B6 levels tested regularly
> Ensure that ALL B vitamins are in balance
> Get as much supplementation as possible from your diet and choose a proven PD diet, with MIND being my favorite
> Stop using as many supplements as possible and see what is in your garden and adjust your cultivation plan accordingly.
The improvement continued. Partly likely due to all lifestyle adjustments, the beautiful warm summer, and the outdoor life, which I wrote about in "summertime". Actually, I expected a new dip this winter, but despite the dark & cold, that does not seem to be the case. I think it has to do with unintentionally removing perhaps the biggest trigger for my PD development:
S T R E S S
All possible causes of PD may apply to me, but the traumatic and especially the chronic occupational stress that I have experienced in my life gives me the most chance. My father crashed as a pilot when I was 4 years old, which turned our family upside down. The role of being responsible for my family, society, all injustice in the world, was something I always took for granted. It is becoming increasingly clear to me, that I was engaging in self-destructive behavior with my own business, short nights, constant financial uncertainty, inability to say no, and wanting to please everyone. Now that I am forced to lead a relatively stress-free life due, how ironic, to PD, I can see the toll it took on me. My retirement since July also helps with that. We don't have much, but we live a peaceful life in a beautiful environment in a social country with all free medical facilities for PD.
> If possible, search for the causes of your PD
> Try to find a treatment that can address this at the root, for me it was for now B6 balance and anti-stress.
> Simultaneously tackle the dangerous symptoms that are harmful to you and your medication, such as insomnia and constipation.
> Only then, as a last step, would I focus on the infinitely many other lifestyle adjustments, exercises, and supplements that may support and improve your treatment and overall health.
My C/L medication is now almost negligible. For appearance's sake, I take 2x 5/50mg daily. It's a bit slower, but I can lead a nearly normal life again. Even the previously thought ‘untreatable’ PN has stopped progression and even decreased slightly. All of this, of course, helps with the acceptance of my PD. When you can go from the doomsday scenario of being in a wheelchair to making beautiful hikes in the mountains, you can't help but be happy, even with some limitations from PD. 🍀
What's CP?
@Esperanto...Excellent commentary and very motivational. I am glad that you are in the slow progression category which is of course the case for most of us
Keeping tabs on your symptoms and keeping abreast with developing treatments and techniques for enhancing Parkinson's Mobility and lifestyle is crucial to a long and healthy yet simple life.
There is always hope as long as we keep our faith alive. From the latter part of 2022 to almost all of 2023 I had quite a few falls. Then I started supplementing with B2 and B12 and for the past few weeks no more falls.
Faith, hope and positive outlook is crucial.
pdpatient - "I am glad that you are in the slow progression category which is of course the case for most of us" - Do you mean most of us on Cure Parkinson's? Or?
Most of Parkinson's patients overall. It really is a slow progressing disease and it gets worse over a really long time. The checkpoints are at the 10, 20 and 30 year mark especially for young onset Parkinson's patients.
Merci pdpatient, that’s why I'm such a fan of the Mischley method. With her app PRO-PD, you can track the "normal" progression of PD and compare it to your own trajectory. Indeed, for most of us, it's a slow progression unless you try to adapt your lifestyle and analyze any sudden + / - changes. Apart from that, just enjoy life!
👏👏👏
You say:
”When you can go from the doomsday scenario of being in a wheelchair to making beautiful hikes in the mountains, you can't help but be happy, even with some limitations from PD. 🍀”
🙏
The first step is “the point of view and what to look at”. If we continue to look only at the disease we wouldn't have any other reality and in the end even if there was a cure we wouldn't accept it, a total inversion!
3 years in from diagnosis (not much I know) and generally well.
Exercise (running, boxing, yoga). Supplements including Vit C,D, B complex and high dose B1. Avoid dairy. Go easy on gluten, meat and sugar. Meditation. Time outdoors in nature.
Very interested in Autophogy / fasting but only dabbled so far.
Good luck everyone. You are troopers👌
Good post. I was diagnosed 20 yrs ago and have been with Rock Steady Boxing (RSB) for 17 years. I was diagnosed at 46 and I am now 66. I’ve tried a few things from this website but haven’t found the magic bullet yet. A few things that have helped a bit are coconut oil and high cocoa content chocolate and I also drink Emergen C nearly everyday. Stress is the thing that bothers me the most. I need to do some Tai Chi or some yoga or meditation but haven’t been able to stick with anything. The past year I have been doing Spin class one or two times a week. Acceptance, a positive attitude and prayer help also. And one more thing…..Never give up! 🥊
Parkinson's may progress more overnight - what do you use to help you get a good night sleep?
DO YOU REALLY HAVE PD?
Do all Parkinson patient progress to advanced stages?
What symptoms do you get if you take Parkinson's medication late or miss a dose.
