Yes, I am a newbie here. Looks like a great place to spend some time. At seventy-five, I have had PD for five and a half years. I still don't take medications. It's all about self-directed neuroplasticity.
I have developed a training program that I would like to share with others. I have reversed many of my PD symptoms. Even climbed a 14,067 foot mountain last year. I want to provide encouragement and real solutions to dealing with PD.
I look forward to connecting with others all around the world.
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chrishageseth
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There really are no ropes here. We support each other with information, experiences, and resources. You say you have developed a plan to reverse PD. I am alll ears. Start wherever you like. I want to hear it all...how to help the motor and the non motor issues.
I did sleep well, thanks. Several people have asked about my story so here is a short piece I wrote a couple months ago.
My first non-motor symptoms of PD started over eight years ago consisting of loss of sense of smell, severe constipation, bladder difficulties and very dry eyes. My motor symptoms became apparent about the time I turned seventy. They consisted of stooped posture, loss of arm swing, tremors in my right arm and leg, a fixed mask-like face, slower and smaller movements, noticeable problems with balance, diminished hand writing, loss of fine dexterity, and stiffness.
My neurologist diagnosed me with PD shortly thereafter. He told me the most important thing I could do was to "exercise, exercise, exercise." I was already a jogger/power walker. So I decided to increase my mileage and then decided yoga seemed to make sense and went to my first yoga class the next day—it was life-changing right away. I added weight lifting but after more than a year did not think it helped so with a personal trainer I started high intensity interval training at my health club.
I also tried some medications. First Azelect which is incredibly expensive and caused me a severe dry mouth. I quit it after two months. Amantadine seemed to help my tremor at first but then it seemed to lose its effect. Finally, I tried L-Dopa but didn’t notice any improvement in my tremors so I quit.
Six months into my diagnosis, I began to notice significant changes taking place. My face returned to normal expressiveness. My strides were longer and my arm swing was better. Tremors in my leg began to disappear. I was less stiff.
In the ensuing years my symptoms continued to improve. Most people were surprised when I told them I had PD; they said they couldn’t see any signs of it.
Finally, five and a half years since my diagnosis I am convinced that I have experienced exercise -induced neuroplasticity with my aerobic walking, yoga, high intensity interval training, and mindfulness practices.
I am sure I can help others with PD and so I created a training program for other PwPs. You can see my training program on my website: sweatingoutpd.com
I'm open to talking with anybody about any PD subject any time they would like. If you want to reach me, my contact information is on my website.
No specifically, Boyce3600, what more would you like to know?
you're using neuroplacticity to rewire, and manage pd symptoms. have you tried to determine cause?
like meds, benefits don't endure, eh?
you're obviously benefiting from extra oxygen intake, that would suggest to me, an oxidative state that you could manage with diet, for example.
I suspect my circulation system, i'm not getting oxygen to my brain. i'm thinking this because my affected hand/arm is swollen and cold to the touch, the only symptom that hasn't abated in my case. neuro will send me to md I bet. not his job description. that's public medicine for you.
Self-directed neuroplasticity comes about 2 ways in my training. First is being very mindful of you posture and your movement. Never settle for the Parkinson defaults of stooped posture, small shuffling steps, no smiling. Be aware of them in the moment and correct them to pre-PD settings. My gait is now so good no one cal even tell I have PD. The other way is deep mind guided imagery. Your imagination can have almost the same effect on the brain as actual doing. If you want an example of guided imagery, I will send you one.
Regarding cause, I have no idea what caused my PD and I am not particularly interested either. I want to do the job at hand--reverse symptoms without meds.
As for oxygen, I live at 5000 feet above sea level. several percent less oxygen than at sea level.
Your swollen hand is a concern. An MD should see it. It could be a cardiovascular problem and not PD.
I am replying and I fear of getting bashed by everybody on this site. I believe you have coldness in your extremities because your Chi otherwise known as Meridian or Channel is not functioning right and it is very common in PD. My left leg below my knee felt like it was dead it was that unnaturally cold. Accupuncturist also told me that that particular Channel was running backwards. Accupuncture treatment did not seem to do much of anything. Started using far infrared heating pad and that really helped. No more dead leg. Acupuncturist was very surprised that my meridian was flowing the right way.
I reviewed your web site a very impressive work. You workout looks very good. I have been encouraging PWP to use exercise ti improve their life. I do Crossfit 5 or 6 days a week. My work out is much higher in intensity. I am 62 11 years Dx with PD. I am only 62. What you are doing is great but i believe this site does not allow advertisement.
Hi, kudos to you, thank you for answering my questions very your program have you had any feedback on it from people that have done it how long have they been doing it how much better today yet are they still doing it are the improvements staying with them? Thank you for answering my questions Mary
My first non-motor symptoms of PD started over eight years ago consisting of loss of sense of smell, severe constipation, bladder difficulties and very dry eyes. My motor symptoms became apparent about the time I turned seventy. They consisted of stooped posture, loss of arm swing, tremors in my right arm and leg, a fixed mask-like face, slower and smaller movements, noticeable problems with balance, diminished hand writing, loss of fine dexterity, and stiffness.
My neurologist diagnosed me with PD shortly thereafter. He told me the most important thing I could do was to "exercise, exercise, exercise." I was already a jogger/power walker. So I decided to increase my mileage and then decided yoga seemed to make sense and went to my first yoga class the next day—it was life-changing right away. I added weight lifting but after more than a year did not think it helped so with a personal trainer I started high intensity interval training at my health club.
I also tried some medications. First Azelect which is incredibly expensive and caused me a severe dry mouth. I quit it after two months. Amantadine seemed to help my tremor at first but then it seemed to lose its effect. Finally, I tried L-Dopa but didn’t notice any improvement in my tremors so I quit.
Six months into my diagnosis, I began to notice significant changes taking place. My face returned to normal expressiveness. My strides were longer and my arm swing was better. Tremors in my leg began to disappear. I was less stiff.
In the ensuing years my symptoms continued to improve. Most people were surprised when I told them I had PD; they said they couldn’t see any signs of it.
Finally, five and a half years since my diagnosis I am convinced that I have experienced exercise -induced neuroplasticity with my aerobic walking, yoga, high intensity interval training, and mindfulness practices.
I am sure I can help others with PD and so I created a training program for other PwPs. You can see my training program on my website: sweatingoutpd.com
I'm open to talking with anybody about any PD subject any time they would like. If you want to reach me, my contact information is on my website.
Welcome. I've perused your whole website and really enjoyed it. I'm amazed at all your activities and the intensity with which you exercise. I walk about 20-30 minutes per day, workout with a trainer once per week and do Gyrotonics for stretching. I still get tired and have to force myself. I I struggle with apathy.
How do you plan to connect with PWPs that sign up for your program? Will you use Skype, email or telephone? How will you motivate followers?
I connect with my trainees by email, phone and Skype. I believe it is critical that there be a close trusting relationship with my trainees. Hence, everyone has my phone number and is free to call most anytime. I view the training as something akin to re-booting your computer or cell phone. The first week is study and laying the ground work, the next six using guided imagery and contemplation cement in new concepts that assist the process of neuroplasticity.
Do you practice yoga or any other movement therapy?
Feel free to get in touch if you would like.
And a note: the worst thing to do for apathy is nothing.
Hi Dr Hageseth, I did enjoy watching your video, and have been inspired to get into yoga again. I did quite a few classes in my young days. I do lots of walking and at age 75 feel I am doing o.k.
I like your site but have not had time to read it carefully yet. I think its so important that we all be proactive--to be in charge of our own PD as much as possible. The caregivers should encourage their PD person to be proactive too.
Right on. In fact I am in the process of adding some content to my basic training manual so the caregivers can go through the training at the same time but with different goals.
My contact info is on my website, feel free to get in touch.
The short answer is yoga, aerobic walking, mindful meditation and intermittent high intensity workouts. It is summarized on my website. The page link is at t he end of this post.
But the first and most important element is in the mind. What do I believe about the disease and my own capacity to change its course?
I am very interested in your approach. My husband is on 8 pills every morn, carb/leve dopa 4 x and four pills at night and is miserable! So depressed cant get off the couch and many surgeries causing much pain besides PD. Give me your magic bullet. Jan
Magic bullet . . . I wish it were that simple. But the truth is, self-directed neuroplasticity requires work, dedication and time. But it is very do-able.
I am concerned about your husband's depression. The depression that comes with PD is not necessarily the same as major clinical depression. So the bad news is antidepressants do not work as well. What works? The best is exercise. And for someone who is couch bound that feels nigh unto impossible. But it must be done. Of course we start out slowly, but it is amazing how much people benefit in a short period of time.
I say dealing with PD is not a battle, rather it's like dancing with an intoxicated partner. You never know what is coming next, but you respond--not with fists--but with increasing self mastery and creativity.
Please visit my website if you haven't already. Then contact me so we can chat.
Great Chris ! Your wonderful result and interesting web is encouraging me in addition to John Pepper I had the honor to meet and his great book and web reverseparkinsons.net for his theory reversing Parkinson!!
Keep up the good work and I'll try to do the same!
Here is my update for those of you following my story:
With my movements disorders 's neurologist help ,6 months ago I stopped taking Amantadine (problem with side affects) over the last 7 weeks I have decreased taking Sinemet from 8 25/100 I am now on 4 25/100 (no more freezing ! Less apathy, no more Dystonia, more energy, feel better!! ) , last week I stopped taking CITALOPRAM for anxiety , I still take 1 vit D.
Weekly I regular walk as an exercise with girl friends for 5 hours over 3 days , I take 2 one hours Yoga class , I take 3 one hour exercises for Parkinson class, I started to fast walk 3 x 10 minutes following John's theory - will increase progressively to 3 hrs -
Cooking, helping older ( I am 67) friends in need grocery shopping and delivering, for the last 5 months visiting daily a niece 49 y old on the end of her life , office working part time in our home - my husband is a contractor , doing laundry, folding clothes, ironing, dusting, driving, grocery shopping, reading Parkinson books , blogs, newsletters, attending conferences, lectures, summits, webminars EVERYTHING on PD ,, all these and of course I am lucky to have wonderful times with my husband, 2 Adult children, 4 grandchildren, friends , relatives ! It keep me alive and well!🌞👏
You are doing everything right and your quality of life is the proof in the pudding.
John Pepper and I have spoken often and I met him in Portland at the world Congress for PD last month. I have also met and been evaluated by Dr. Norman Doidge who wholeheartedly endorses the concept that my regimen has induced the positive neuroplastic changes in my brain. I'm trying to get the word out as widely as I can that others can do the same. And you are living proof of that.
I would like to offer you a gift: a 20 minute guided imagery recording that honors what you h ave achieved and what brightness there is in your future. My contact info is on my website.
I honestly do not understand how so many people with PD can be so very active when I can not get up much energy and always feeling fatigued no matter how much I try and want to do. I do walk about a half mile each day...sometimes one mile...but still feel exhausted just doing ordinary house work. May I ask what are your symptoms and how you were diagnosed with PD? What Stage of PD do you suspect you are in?
First off, it is important that while we all have PD, it affects each of us differently. So don't be critical of yourself about not exercising enough--not having as much energy as others. Rather it is your starting point. Then you need to lay out a program and live it out. That is what my training is about.
You asked about my history and symptoms. I wrote this summary sometime back.
----------------------------------------
My first non-motor symptoms of PD started over eight years ago consisting of loss of sense of smell, severe constipation, bladder difficulties and very dry eyes. My motor symptoms became apparent about the time I turned seventy. They consisted of stooped posture, loss of arm swing, tremors in my right arm and leg, a fixed mask-like face, slower and smaller movements, noticeable problems with balance, diminished hand writing, loss of fine dexterity, and stiffness.
My neurologist diagnosed me with PD shortly thereafter. He told me the most important thing I could do was to "exercise, exercise, exercise." I was already a jogger/power walker. So I decided to increase my mileage and then decided yoga seemed to make sense and went to my first yoga class the next day—it was life-changing right away. I added weight lifting but after more than a year did not think it helped, so with a personal trainer I started high intensity interval training at my health club.
I also tried some medications. First Azelect which is incredibly expensive and caused me a severe dry mouth. I quit it after two months. Amantadine seemed to help my tremor at first but then it seemed to lose its effect. Finally, I tried L-Dopa but didn’t notice any improvement in my tremors so I quit.
Six months into my diagnosis, I began to notice significant changes taking place. My face returned to normal expressiveness. My strides were longer and my arm swing was better. Tremors in my leg began to disappear. I was less stiff.
In the ensuing years my symptoms continued to improve. Most people were surprised when I told them I had PD; they said they couldn’t see any signs of it.
Finally, five and a half years since my diagnosis I am convinced that I have experienced exercise -induced neuroplasticity with my aerobic walking, yoga, high intensity interval training, and mindfulness practices.
I have heard experts say that dopamine production is increased by exercise. I don't know that for a fact. After a very intense workout my tremor is less.
I am more concerned about alpha synuclean (AS) than I am with dopamine. AS accumulates in neurons and is thought to be what ultimately destroys it. It is the substance in Lewy bodies. My hunch is that I'm getting rid of AS. A hunch, not a conclusion.
Yes I did have a DAT scan and it was strongly indicative of PD.
Can you speak more about AS? (Anything you know.) Also are you saying that people with PD all have AS? You say you have a hunch you are getting rid of them. I have read that Parkinsonism can develop into ( or can possibly have as a side component) Lewy Body Dementia. I have also recently read that it is suspected Lewy Bodies begin in the gut. Any knowledge on any of these points is appreciated.
Hi. You have many, many replies and are already a very trusted member of this community! I replied with a question a few days ago about your comment regarding having a hunch you are ridding yourself of AS. Could you check that reply and possibly speak to that? I appreciate it I know your time is valuable. Thank you.
Gracia Clark (patient): Fatigue was the first Parkinson's symptom I noticed; it is still my most debilitating one. Feeling fatigued is different from feeling sleepy, depressed or apathetic. As an anthropologist who has worked in West Africa, I am reminded of the fatigue I suffered after coming down with malaria. When fighting malaria, I faced an overwhelming need to lie down. But unlike fatigue from malaria, Parkinson’s fatigue doesn’t go away after taking a few malaria pills. Finding treatment for Parkinson’s fatigue can be a huge challenge. Medications approved for other diseases—such as narcolepsy—may provide some benefit, but their efficacy in Parkinson’s is under studied, and insurance companies can decline to cover such off-label uses. Furthermore, because many diseases can cause fatigue, receiving an accurate diagnosis can be difficult, as it was in my case. I have heard many people with Parkinson’s say fatigue is one of their most debilitating symptoms, and yet the symptom is not well understood. There is an urgent need for increased research to better understand fatigue and find ways to treat it.”
Theresa, you have to mention your diabetis, how severe it is and if it's controlled, your blood pressure problem? makes a diff.
neuroplacticity is, I suspect, for basically healthy persons, but I might be out of order....you have to take your body's health in hand, than your brain. I've been thinking (imogi) for what it's worth.
Fortunately neuroplasticity is going on all the time. It can be good or it can be bad. As long as there is no dementia, with proper guidance most people can achieve some success with self-directed behaviors and mindfulness.
I am of the opinion that our BodyMind is one thing. They are not all that separate.
The diabetes, blood pressure, hypothyroidism, and depression are well under control, and I feel the PD is also. However my biggest challenge is fatigue. For example, I just now took a shower and washed my hair and I am so exhausted from it. After a little bit I will recover and do something else -- which will inevitably make me exhausted again. This goes on all day long. Sometimes I'm too exhausted to sit up to watch TV and wind up watching it laying down.
i'm not on any meds, and I similarly get tired quickly. it's the pd, then?
i'm still studying my pd, I am also experiencing balance problem.
i'm installing vinyl flooring.....last 3 days....hope to get done tonite and my pellet stove back in place. very frustrated with my limitations, can't even make muffins.....5-year old can do it as well. you should see them.
Have you had your thyroid check recently given that an overdose has the same physical effect as underdosing. my fatigue improved after my thyroid meds were changed
We are all different and we all have different underlying health problems. Also, Teresa, you haven't been on the meds for very long. I know when I first started the sinemet it took months before it really helped me and I was able to start doing more things, like hiking and going on longer bike rides. I'm still limited though because I have problems with my tendons and my shoulder and my wrist, blah blah blah. So I always have to be careful with certain exercises. As we age we don't just have PD.
I've been on the Sinemet for 2 months now and it truly has helped me a lot with the PD symptoms. I'm so very much more comfortable now, but still the exhaustion plagues me.
Exercise begets energy. A difficult conundrum to be sure. If you wish the support of others to maintain a program: Ten years of intense exercise at rocksteadyboxing.org gym has made a huge difference for me. I have been able to climb Mt. Elbert and run marathons as a result of this training. Seek out an affiliated program near you. And congratulations to Chris for developing, sticking with, and sharing his challenging program.
Are you taking azilect? I found it helped a huge amount with fatigue. Prior to diagnosis I would suddenly get to a point where I simply couldn't press on regardless of how much I wanted or needed to. It took around 2 weeks to start helping.
Once you have a bit more energy you can do a little more exercise, get a little more energy, do a little more etc.
Astra7 "Did it help at all with fatigue? Also have you had your iron levels checked? "
Yes, I get a blood test every 3 months and everything you can think of is tested. I take B12 shots and prescription strength Vit D. I don't think the Azilect has helped with the fatigue. It is as bad as it ever has been, but I do think it has extended the life of the Sinemet.
Sorry if my response is a repeat of another post !
Each Parkinson patient has experienced different results taking Sinemet, here is mine :
Diagnosed 5 years ago by a Dr Neurologist, second opinion by a Movement Disorder Neurologist , even though resisting taking medication, I got convinced by Drs and family members that it would improve quality of life! I started then Sinemet and it was increased to 8 a days as PD progressed but it never removed all disorders!
For my first time, I have participated in a Clinical Research “Neurodegeneration and Brain Function in Aging with Parkinson Disease” . On 8/18 an MRI was taken while OFF medications since 6 pm the day before - 1st time on No medication since diagnostic - in the morning I had many times Dystonia, freezing, needed my husband help for me to get ready...To our astonishment after noon I was able to get off the car by myself and then to walk on to the registration desk , perform many movement tests, take the bus, first golf cart ride , MRI etc ...with no problems , was fine and surprised from the positive result !!
I still have Parkinson, I feel it every days, my left arm does not swing, slow movement, stiffness,problems with coordination, rhythmic muscle contractions, slow bodily movement, fatigue,anxiety or apathy, facial expression,blank stare, constipation, neck tightness, small handwriting, unintentional weight loss etc....
I always consult my doctor for medical advice. I attend many conferences, support group, summits, webinars, read books, newsletters, and blogs to instruct myself.
I don't know my stage, and it does not matter to me !
I'll get back to you later Chris, thanks for the offer !
Your experience with being off meds for your scan doesn't surprise me. I have heard others say this and experienced something similar though not as dramatic.
I don't know that this applies to your circumstance but I do also think many people actually end up on too much levadopa and as I have said elsewhere mistaking the side effects of levadopa for symptoms and so keep taking more.
The other thing I think (again not personal to you) is we can take medication expecting to be symptom free at least when we are on but that doesn't always happen, some of us may still have symptoms even on optimum medication .
Chris, I've juSt been looking at your site and I really appreciate your transparency.
A question about the dat scan pictures, I take it only the two on the right are your brain. I don't know anything about reading scans but I ask because all dat scans of PD I've seen and including mine showed marked loss of dopamine only on one side. Those scans seemed to be both sides whereas your clinical picture you described is of symptoms only on one side?
It is always so inspiring to hear the stories of people who’ve managed to stay positive and deal with PD not just suffer from it!
I have been diagnosed with PD 8 years ago at 50 and made a decision then to delay taking medication as much as I possibly could.
I started taking Azilect three years ago after reading John Pepper book in hope of it helping slowing the PD progression. Still don’t know if it had any positive effect but when I stopped taking it I felt it very much.
6 months ego I started Levadopa and currently taking 250-300mg a day.
Thanks to it and especially to exercises which I do every day I am currently symptoms free, with an exception of fatigue.
I go to gym every day for two hours and do all kinds of exercises, including weight lifting, yoga, Pilates, aerobics, walking. I still can do a split and a wheel and I attribute this to yoga which really helps with flexibility.
I retired three years ego (the company was closed) and still feel guilty that I am not working and doing anything useful but I guess taking responsibility for my health is my job now and I try to do it as best as I could.
I have done a lot of CBT on myself (cognitive behaviour technic) to change my thinking to positive one,
Reading Chris’s and John Pepper stories (I’ve seen John in Melbourne and was in owe of his energy) I feel empowered and yes, it is not fighting with PD, it is outsmarting it.
Since my diagnosis a year ago, I have been focusing on my death. I have arranged for a new l home after my death for my dog in case she outlives me. My funeral is arranged and paid for. I am currently working on an advanced care plan ACP focusing on end of life and so that people will not have to agonise over what my wishes would be if I am unable to tell them.
All good stuff , but your talk made me realize that I should change the mindset I currently am working with. and focusi more on life.
Thanks for the heads up
Cannot find your website it seems to have been hijacked by hairdressers!!!
chrishageseth. Looking forward to hearing about your battle with PD. God knows I can use some help. What is self-directed neuroplasticity anyway? All I know is that I couldn't sleep again las night because of the tremors bothering me. So tell me just how you reversed Parkinson symptoms...I'm dying to know (pun intended).
This is a John Pepper wanna be. I am amazed that an impossible story of mountain climbing at 75 is more believable for the people in this forum, while John Peppers's healthy fast walking is derided with venom.
Its one long cycle of people with early PD claiming theyve got it all figured out. This guy seems to have stopped all of his promotion in the last 2 years. We all know why.
I think you could be more intellectually honest about John Pepper, though. No one here is anti fast walking, we are just anti John making up stuff about fast walking or misrepresenting it. If FW is really healthy, he shouldnt have to attach fanstasy based claims to it.
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