A DAT scan shows I have PD. I take Rytary but Dr Google suggests other meds might help. So I also take cinnamon, phosphatidyl serine, Super B-complex, Vitamin D, Green tea capsules, fish oil, a statin, CoQ10, baby aspirin, miralax, dulcolax, tylenol and melatonin. Some of these are for PD and some are for elevated cholesterol and some are for hemorrhoids and constipation. I also self-medicate using ozone.
The root problem is damage to the corpara nigricans as shown on the DAT scan. In the past I was also dx'd with MS. A small percentage of people with MS get better. That is the brain lesions seen on an MRI fade away. That happened to me. The photo is my ozone set-up.
So PD being a brain disorder like MS, can it get better?
TIA,
kevin
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kaypeeoh
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There have been reports on this forum of (newly diagnosed) people who say they feel better after diagnosis then before diagnosis. To me that means they were less healthy/unhealthy before diagnosis and pulled out all the stops after diagnosis and felt better.
I know a guy with MS who follows the Wahls diet and from all outside appearances, is totally symptom-free. He says he feels symptom-free and that the elimination of wheat is his most important choice.
Have you researched statins? They get mixed reviews.
I take atorvastatin. It dropped my total cholesterol from 280 to 60. I take coq10 to ameliorate the side effects. The benefits far out-weigh the risks, imo.
Abstract
Statins reduce cardiovascular mortality and morbidity as well as cardiovascular events in patients with a very high risk of cardiovascular disease (CVD) and also in subjects with high or moderate risk by reducing the levels of low-density lipoprotein cholesterol (LDL-C). Although they are considered to be drugs with a very good safety profile, because of their wide use there are many concerns that their adverse effects might compromise their proven beneficial effects. Therefore this article reviews all the data and provides an evidence- based insight what are the proven adverse effects of statins and what are the "myths" about them. The most important side effects include myopathy and rhabdomyolysis. Another side effect is increased activity of liver tests which occurs occasionally and is reversible. However, recent studies even suggest that statin therapy can improve hepatic steatosis. It is beyond any doubt that statins do slightly increase the incidence of type 2 diabetes mellitus in people with two or more components of metabolic syndrome but the cardiovascular benefits of such a treatment by far exceed this risk. Statin therapy has also been associated with some adverse renal effects, eg. acute renal failure, but recent data suggest even a possible protective effect of these drugs on renal dysfunction. Concerns that statins might increase cancer have not been proven. On the contrary, several studies have indicated a possible benefit of these drugs in patients with different types of cancer. Early concerns about cognitive dysfunction and memory loss associated with statins use could not be proven and most recent data even suggest a possible beneficial effect of statins in the prevention of dementia. Systematic reviews and clinical guidelines suggest that the cardiovascular benefits of statins by far out-weight non-cardiovascular harms in patients with cardiovascular risk.
You are quite right to question this number. A cholesterol reading of 60 mg/dl is not good📌
‘....surprisingly, low rather than high cholesterol is associated with cognitive decline. When total cholesterol falls below 150, you are more likely to suffer brain atrophy—shrinking’ - The End of Alzheimer’s | Bredesen
Do you mean symptoms gone or Parkinsons gone? Never met anyone who has cured PD. Read often of people who feel better after some time. I believe they have changed their attitude, changed their diet, started meds, and / or increased exercise. Symptoms may be gone for a while but they are not cured.
Hikoi, If you are asking me, I agree with you. I've met one of the four people who "liked" my reply and that was his observation, i.e., that he feels better now than he did before diagnosis, but he understands is because of a healthier lifestyle. And, the guy with MS knows he is not cured, but he is symptom-free. Both understand their symptoms will return, as do I.
Thanks for your response MBA. I think we agree.I was actually responding to the original question which was can PD get better - a very ambiguous word! I believe what we think affects our wellbeing, (and the placebo effect has proven that), but I cant believe that the mind is so powerful it heals us through positivity like some appear to believe. That means that when we are not healed we find some other explanation such as I didnt believe enough or it wasnt my time or God wanted me to suffer (for some obscure reason) or a myriad other ideas that fit our world view.
I have been diagnosed over 13 years and no one could tell I had PD until about 2 years ago. I have taken no supplements except Vit D - when i remember. (But not having some miracle herb or substance to explain my lack of symptoms will not be popular here.)
Perspective is very useful. I have known multiple women who died of cancer in their 30s. Both had children under 10. I am not happy about PD but both of those women would happily trade with me if they were able to. In that respect, I am positive about where i am at.
But, and as you point out, positivity doesnt repair any dopamine transporters, nor any of the other damage done to the brain by PD over time.
The other risk associated with unwarranted positivity is that you might not live for today. Covid hasnt made it any easier, but PWP should do today what it is they want to get done.
Hi MBA dont get me wrong I have symptoms and they are progressing but they have been treated by conventional meds which have served me well so far. I go off now and my gait is affected so I use a stick. I also am low in energy but I’m OK. For the first six years I travelled overseas alot and noone knew i had PD.
I dont think I am unusual. My observation is that people seem to manage very well for 10 years then it often becomes more complex. It does make a different at what age one is. This is a link to a friend who has been on conventional meds many many years.
My initial irritation with her first neurologist who misdiagnosed her and wasted many years of her life when she could have been medicated was that he added to her burden by telling her she was psychosomatic when as a 13-year-old, life is confusing and complex enough without being told you’re psychosomatic.
I wish somebody would do the study and compare the number of times doctors tell women they're psychosomatic compared to the number times they tell men that. Probably be about 10 to 1. It’s a way they avoid doing the hard work of actually diagnosing correctly.
“Sara sees her neurologist every six months for a 30-minute session, and thus spends about one hour in total per year being observed. That leaves, she says, 8,756 hours per year of self care; time when she and others with Parkinson’s experience symptoms, but when nobody’s paying attention.”
“Riggare passionately believes that patients need to be much more involved in their treatment; that they should take ownership of their disease.”
One cannot help but notice the similarity between her response to her doctor’s (lack of meaningful) involvement and that of everyone on this forum, that is, are seeking to take responsibility for our healthcare because 30 minutes of a neurologist time every six months can barely be called healthcare -- except she’s far more clever and ambitious than I am.
If the monitoring gadgets she and others are inventing are on the market now that would actually be a big deal for us.
I’m sure you appreciate having her as a friend. She’s quite inspirational.
Hikoi, would you mind sharing your age at diagnosis? Are you young onset too? Did you start meds right away? I'm debating how I should proceed. I'm 45. Thank you.
Oops, I wrote corpora nigricans when I meant substantia nigra, The former is a veterinary term. The latter is where PD forms but my PD brain confused the two.
I have improved substantially since Dx as measured by Dr. Mischley’s ProPD scale. PD is still present but to outside appearances I don’t have PD. She calls me a positive deviant.
Would you mind elaborating on what you are doing that you think might be contributing to your doing well? My PD is not evident to outside appearances either but I feel its presence 24-7. I too have improved.
My philosophy is similar to yours. I believe I can improve and do well despite my dopamine deficiency, and primarily with the help of Mischley and my own efforts that has been true. So here is my story (since you asked and in case it's helpful to others) ... I believe the more I continue to challenge my mind and body the healthier I will be:
First symptoms: 2017 (trembling finger, harder to brush teeth)
PD Dx: late 2018 by a Neurologist Movement Disorder Specialist
Primary symptoms (intermittent and mild and not usually noticeable): trembling finger, hand or arm in certain positions, stiff neck, slow typing and writing, urgency to urinate, shaking body when doing planks, unusually vivid dreams, slightly crampy legs when I sleep, lack of facial expressions, voice is scratchy.
First visit with Dr. Laurie Mischley: early 2019
Testing: PD specific blood panel, hair test, self reported symptoms (I used a symptom tracker for 3-4 months before mtg her)
Diet: Changed diet radically to become an ovo non-dairy pescatarian (eat fish and eggs, otherwise vegan), with occasional pork (1x/month) … I used to eat reasonably healthy but ate whatever I wanted, including lots of meat and dairy
Supplements (daily, based on deficiencies identified in test results): Coq10, Vit B12, Theracumin, Magnesium, Manganese, Vit D, Fish Oil, Glutathione, Lithium low dose
Exercise (focus on heart rate elevation, functional strength and variety): Uphill hike/jog 45 mins 1-2x/wk, functional workout (planks, bridges, side planks, squats, lunges, etc.) 1-2x/wk, shoot baskets until I work up a sweat 1x/wk, stretch daily .... Occasional stuff: ping pong, snowboard, tai chi, bump a volleyball, kick a soccer ball, the more the better
Meditation/Affirmation: 4-5 days/wk
Clinical study: Was in a 2 year clinical trial where I got monthly infusions of an antibody that was supposed to neutralize alpha-synuclein. Trial was discontinued a few months ago because the data showed no effects.
Work: 40 hours a week self employed
Hobbies: Occasionally play guitar, sing
Social: See friends and family as much as possible (given the pandemic)
I am very grateful to you for sharing all this information. What you are doing has a lot of similarities to what I have been implementing. And you are self employed and still working full time. That is impressive. I am presently being seen by an east coast functional medicine doctor but plan on being evaluated by Dr. Mischley as well.
Glad to help. I don't usually share my story unless someone asks and seems genuinely interested, because folks with PD usually get overwhelmed by it all. It's really not that hard to follow, it just takes a mindset change to "this is how I should live my life if I want to be healthy and not severely limited" .... for me there is nothing like a neurodegenerative condition to provide motivation, because the alternative is scary.
Also, Mischley is awesome ... smart, data driven, balanced, kind and personable. I find her to be a good blend of western medicine style evidence based decision making, and progressive functional medicine out of the box thinking. She books way out, so book an appt. as soon as you can as it will be probably be many months before you see her (if she's taking new patients at all).
Lastly, I'm curious if you have any recommendations for me? What's your regimen? Always eager to learn from someone who is doing well.
The way I know it's PD is that I've been doing planks for years, and am in pretty good shape, so it's not muscle weakness due to being out of shape ... plus it comes and goes, some days it's worse or better than others ... whereas if it were just lack of strength it would be more consistent
If you think you can not improve, you are right. If you think you can improve, you are right. My father ended up in a wheel chair after 10 years right on track with what his doctor said would be his outcome. He believed it and therefore it became his destiny. I believe that after 10 years I will be running up hills. I am consciously willing it to be.
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I love that positive mindset!!! For a while I took on a defeatist attitude and the body follows the mind. Now I am trying to be optimistic and have a positive outlook. I believe that the mind can overcome any obstacles. If people can melt away tumors then we can raise our dopamine levels.
I took classes based on Jon Kabat-Zinn's work. I then studied in Salt Lake City for over a year. I quit because I couldn't find the time to "Sit" every day. Now that I've been forced to retire maybe I'll go back to it.
Unfortunately there is only a PD mouse model study showing that Colloidal Silver (AgNPs) was helpful in a PD mouse model. What that study showed is that AgNPs cross the blood brain barrier (BBB). What was expected is that once the AgNPs crossed the BBB, they would cause increased production of reactive oxygen species/oxidative stress as is seen when used against cancer, and cause increased damage to the Substantia Nigra pars compacta (SNpc), but this was not found to be the case, rather, the AgNPs caused production of hydrogen sulfide (H2S) which is a signaling gas much like NO is a signaling gas. H2S as a signaling gas is highly antiinflammatory which in the study was beneficial in the PD mouse model because it quelled the excess neuroinflammation.
Nobody knows for sure if it would be the same in humans, but I certainly wouldn't hold my breath waiting for a similar PwP study using AgNPs. It is a controversial subject with insufficient human data to recommend for PwPs.
I don't believe it can get better. It progresses slowly, it seems as though things help, but then it moves on to something else. My husband died suddenly after progressing to sun downing. paranoia and migraines in the stomach. I hate being such a downer and I hate Parkinson's!
I am very sorry for what you and your husband experienced. My father is in stage 5 of PD. I think it is worth remembering what a vulnerable population this is on HU and how our posts effect said vulnerable population. I have stage one PD. With my father in stage 5 I am very well versed on the reality of PD. I understand that living in a state of denial of reality does not serve us but some "realism" only serves to disempower. And btw, Jimmy Choi went from walking with a cain to being on America Ninja Warrior. There are many similar accounts.
With a cure not yet found, PD wins the war eventually but that does not mean that along the way way can not win battles and change the timeline of our trajectory.
I hope you and your Dad hold the Parkinson's at bay. We tried everything for so long, but it would have all been easier if he hadn't developed Parkinson's dementia and we could never really deal with the disease after that. There was no cooperation or understanding on his part. I miss him, dear man, he deserved better. He died at 80, but already had REM sleep disorder at 20.
I am sorry for your loss. I had been taking comfort in the fact that my REMSBD seems to have started when I was 19 (I am 61 and have not been diagnosed with PD but have many symptoms). It sounds like your husband did pretty good having a person like you by his side. Good luck and may God Bless You.
My theory is there are probably very many people with very very early first stages of PD, very few symptoms, as yet undiagnosed and some may never develop many symptoms so long as they have a healthy lifestyle so will never know they dodged a bullet. Others will trigger it if they eat the wrong food, through lack of exercise, toxins including many pharmaceuticals, viruses, bacteria etc.
So if that is true if you are in the first symptoms stage maybe 5 or 10 years into it and you clean up your lifestyle it seems fully believable that you can reverse it. Once the brain has sustained major damage it seems likely the same changes could very slowly reverse the damage but it would be a slow process and not noticeable immediately but as it began to heal the speed of recovery could accelerate.
Anyway that is the theory I’m working on. Make all the changes to give him the best chance of recovery and don’t introduce anymore pharmaceuticals than is necessary to avoid more side effects. I think a problem is that with the lack of dopamine comes apathy so it may be hard for many to self motivate so having someone to partner with has got to be easier than trying to do it alone if apathy is one of your symptoms.
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