On a supplement! I completely understand these things take time. However, my father is willing to trial supplements that have NO effect, but he feels something we added is contributing to fatigue and difficulty speaking in the last several days
What we have started so far (with 2 day gap in between):
In the next few days I wanted to try the following but im wondering if his body needs to settle down and adjust first or backtrack and see what is causing an adverse reaction: ALA, acetyl l carnitine, Lithium orotate, L theanine.
Thanks All,
Simona
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simonasays
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This is a marathon not a sprint. In my opinion 2 days between modifications is way too short. Going forward give each minor intervention (something good on general principles but is not reputed to have a major effect on Parkinson's) preferably two weeks to make sure there are no adverse effects. For a major intervention - something that is supposed to actually improve symptoms - like mannitol or cinnamon, give each the estimated time to get a response before making any other changes. That would be 2 months for cinnamon , or 4 months for thiamine.
At this point I would do binary splits to figure out what is adverse - divide the supplements you have already started into two groups, call them group A and group B, and stop taking group B for a week or two. If no change, resume taking group B and stop taking group A. After you identify which group is causing the trouble then try adding back the members of that group one at a time.
This is excellent advice. thank you. Yes I knew I was going too fast but we were just shocked at the decline he has experienced this year. We only just visited for the first time in a year and a half (they live 1000 miles a away). But, i will scale back starting tomorrow.
As an addendum, be sure he is not staying inside cooped up all the time, because of covid or else. Too many people are highly stressed, not exercising, and not getting enough sun outdoors, and this will contribute to a quick downturn in health for anyone. A fast walk outdoors should be beneficial for anyone capable of moving around.
Yes. So true for so many. My dad lives in a community with a gym and pool and he used to go daily. they closed these areas. he has been walking but lately much too short. Stress of this year has aged many.
There you go - gently remind him to go walk outside on nice sunny days. PD or not, this benefits all of us. Doing so will improve his serotonin and melatonin levels, and possibly improve his sleep that's huge for health. No amount of supplement will make up for not moving around.
Yes I agree supplements take a while and sometimes you will notice they actually did help after you stop. As an example, before my HWP diagnosis the functional medicine dr was treating him for mold based on urine test. He began weekly glutathione injections as part of detox. During the initial covid shut down (about 10 weeks) shots stopped. He had a significant progression in symptoms and DatScan confirmed PD that a prior Neurologist said he did not have.
As PD is related to inflammation we are also going with an anti-inflammatory diet. Their are a couple like Dr Weil's, Mediterranean diet etc. We are going to try Wahls level 1.
You may want to get some guidance from a nutritionist or functional doctor. If you want to check my early posting for my hwp protocol under Spencer53 - I gather information from Dr. David Perlmutter, Dr. Dale Bredesen, Dr. Mark Hyman and more. Mucuna is a natural powder which is Levodopa - I'm giving my husband 1 level teaspoon in water twice a day - trying for a bit of separation from other supplements. He is not on any Parkinson meds as it simply did not work for him. He's into his 7th year of Parkinsons. Let me know if you find my early post of his protocol. Good Luck.
Do you think the glutathione helps? How much and how often.? I did glutathione IVS in 2018 and am considering using them again. I have heard that the IVS only last 72hrs.i was getting them once a week, then once every 2wks,then once a month. Very expensive. Is the liquid glutathione effective? I would like to follow you.
Melatonin makes me fatigued the next morning. Just a thought. I just got off my Zoom with Dr. Mischley. She said 6 months it can take to register higher lithium levels. Wowza! It is a marathon, not a sprint.
I am a medical provider myself. so I know all about bedside manner, staying up to date with research, etc. (most medical providers are dinosaurs). I have been seeing Dr. Mischley once per year via Zoom for the last 4 years (although I did not see her in 2020). I cannot tell you how kind, knowledgable and informative she is. She is thorough and genuine. She is doing so much to help PwP, it is absolutely amazing. She is encouraging me to specialize in PD as an OT. I currently work with the pediatric population, so it would be a big switch. She thinks it would be so helpful to have PwP helping PwP. I agree. I have been wondering where my career should go next. I am moving out to Washington in two years after my son graduates, so I would love to work with Dr. Mischley in any way. I gave my blood test results (and hair test results) from Dr. Mischley to my primary care doctor in Chicago for my annual physical (so I didn't have to repeat a full panel blood test I just took). He only mentioned cholesterol as an issue, lowering it or putting me on meds ( I have high cholesterol but Dr. Mischley said it is good for PwP, as cholesterol protects the brain). Dr. Mischley and I did talk about my heart (per cholesterol) and I just had a calcium test so it showed no calcium in my coronary arteries (so no detectable plaque). This is the go ahead for keeping my cholesterol high. Dr. Mischley brought up the zero Lithium in my body, slightly elevated lead levels (and how to avoid lead), the lower sodium level, hs-CRP (inflammation) which was VERY high. Dr. Mischley explained that any level over .8 (my was 32) leads to a 50% chance of death within the next 10 years. We went over why I would have such inflammation. She suspects it may be due to getting the Covid vaccine, so she wants my blood re-tested 2 months after my second vaccine dose (which is this week). We will meet again if the results are still high (then it is not just a temporary response to the vaccine). She said we need to find the source of the inflammation quickly. She is encouraging me to start with Mucuna pruriens as she has research that shows it helps early in the disease to replace dopamine to decrease any symptoms. She doesn't think putting off Mucuna has any benefit. I'm still exploring that. She is working with a graduate student that specializes in Mucuna. I am going to Zoom with that student on May 4 to get her 2 cents. I get more information related to my health as a PwP from Dr. Mischley than all my other medical providers combined. She looks at my information through the lens of PD. My body is NOT the same as a peer my age. I have PD. Lower sodium for a peer is ok, even desirable. For me, PwP tend to have low blood pressure and low sodium will make it worse. She told me to salt everything (this advice is to me specifically, please do not assume it is safe for you). This is NOT the advice my primary doctor would ever give, because he is looking at me as a typical 55 year old woman. Dr. Mischley has experience to back it up....I believe one research study she is trying to get going has 2600 PwP ready to go. She also recommended an Oura ring. She wears one (I asked about it as she was wearing it on her left ring finger). She was telling me about HRV (heart rate variability) and how it affects your health. She showed me her personal data and compared it to a PwP. Wowza. Huge difference. I am going to start documenting my health info with the Oura ring. It will help her have a better picture of my health as I navigate this disease. She encourages PwP to fill out the PROPD.org every 3-6 months so it creates a clear timeline of symptoms/health for yourself/your physician/her. I think I have only filled it out two or three times. She makes me realize I can be doing a much better job of taking care of my health to minimize PD. That is on me. To answer your question.....I just love Dr. Mischley. She is the real (in touch with PD) deal. My health is much better off if I follow her earned wisdom.
wow thank you for this amazing description / endorsement. I am convinced. Very interesting about cholesterol! My dad just started taking a statin recently and I think this may be one of the reasons for his decline. And getting labs done and having her review it sounds exactly like what he needs. I am a PT! Never worked with pediatrics and truly admire my PT SLP OT friends who work with kids! And I certainly think that having first hand experience of a condition when treating it is what would make you an amazing clinician. When I was working in inpatient rehab in our hospital, I always wanted the PD patients because of my experience with my dad. One example is making sure the patients dont get therapy on their off times!
And also YES. So frustrated with our current medical model for so many conditions. No one takes a whole body approach and the industry is SO fragmented! Our "systems" don't work exclusive of each other and it's time western medicine catches up.
Thank you for your reply. It was very informative. I took her summer class on PD and was impressed. I asked my doctor about lithium and she looked at me like I was crazy. Dr Mischley seems to put her heart and soul into trying to find a way to help make PwP's more comfortable in living with PD as well as finding the true cause.
I don't know what time of day he is taking melatonin, but it's very likely to cause drowsiness. I take it as a sleep aid about an hour before bed time.
Way too much, too close together and your father's situation is what typically happens when you give too many new supplements so close together. You have no clue what is causing what.
What I have found most effective for my friends who I have worked with is to not give more than one new supplement per month. Four to six weeks apart is very likely to be more useful than all at once, especially if you encounter a problem such as your father is experiencing now . As you can see, you are kind of stuck as to what is causing the problem in your father now. Adding a statin is also a problem which you should have mentioned in your original post as statins are noted for many problem side effects of which your father is now experiencing two. Giving more detailed information is also useful as you say that your father is having difficulty speaking, but this is too general to be useful. Difficulty speaking can mean that you are having a hard time thinking of the correct words or it can also mean that his mouth and vocal mechanisms are not responding properly when he tries to speak or it can mean that he has developed brain fog and can not concentrate well enough to speak properly to name just 3 possibilities. Dysphasia is language disorder marked by deficiency in the generation of speech, and sometimes also in its comprehension, due to brain disease or damage and may be the problem also.
Statins are well established to cause fatigue as outlined here :
As you can see from the above, statins may be a problem and considering the health issues associated with PD, even more so in PwP, so considering an alternative to statins that has a better safety profile makes a lot of sense.
Here is a link to the story of a friend who started a supplement regimen to improve her cognitive decline and how she added each individual supplement one at a time to achieve an excellent outcome over a period of about a year :
I can vouch for Art. He puts in the hours of research. I agree with Art about the supplements and the statin. Call Dr. Mischley and get a consultation. Don't take chances with making the situation worse. Ask to be put on the "call if you get a cancellation" list. It can help speed it up. Have you signed up for the PD online school? That is helpful.
To update, we decided to not change a thing unless his symptoms persisted longer than a week. They did not and we all decided to assume it was just his body adjusting. After 2 days of posting this he reported feeling considerable more energy and less apathy. He is walking more, going outside more, and has resumed his obsessive home maintenance projects (in other words, typical dad stuff). There has been no improvement in any of the features of his parkinson's (motor and non motor) However i am taking this improvement in mood and energy levels as a sign that whatever he is currently taking is not giving him deleterious effects.
A little background about myself and my father. I am a full time physical therapist and a mother of two children under the age of 5. I previously worked with a neuro population (mostly stroke, TBI) in an inpatient unit. After my second child I returned to men's and women's pelvic floor and gender specific cancers. My father lives 1000 miles away and often makes many medical choices without my knowledge including adding a statin to his medical regimen (a medication we had worked to get him off years ago). I am also well versed on the medical implications and side effects of this class of medicines. Shocked about his decline I had him add the supplements hastily. I am also aware that "having trouble speaking" could mean many different things. Aphasia (or the previously used term Dysphasia) is a common condition allied health professionals come across and treat. He does not have this problem. His speech is definitely connected to energy levels and dopamine as in the AM he has trouble speaking until he takes CD/LD and then again in the PM when it is clear he is exhausted.
I have plans to take the PD school along with him and definitely would eventually like to consult with Dr, Mischley in the future and have no plans to add anything else. In the meantime, with wonderful people on this forum providing great research i am definitely not going about anything willy nilly
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