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Do you have theories about why you have Parkinsons?
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I have one – oral health. If you have PD, please complete a survey I have come up with to prove or disprove the idea oral health issues could be the root cause of PD and Pre-PD. Very short but hugely important
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I believe there has been some conjecture about association with earlier severe viral disease, such as the 1918 Spanish flu. (My father-in-law developed PD in his 70’s after surviving the flu on a WWI troop ship.) I had both an unusually severe case of measles in the 1950’s and a terrible bout with the flu in 1967-68. It is known many viruses can asymptomatically lurk in our bodies to emerge later from stress or age in a manner similar to chicken pox/shingles.
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I just want to thank those that have taken my survey – you all are making a HUGE IMPACT. Please share with others with PD. We are going to make a difference.
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Well, I don’t recall responding to this, but then my memory has been affected some by Parkinson’s.
I did the genetic testing by the University of Indiana as given to me by Fox Foundation. It was negative. I figure I got it do to old age.
I am 84, still able to drive, cook, dress, exercise regularly, and just completed some Balance classes. My tremors in my right and are my biggest complaint. I don’t go out to eat due to that, and that is upsetting. I could not take the LevaDopa. It caused extreme nausea. Now trying Rytary, but in a very small dose. I am just going to have to stop wondering how I got this and accept it.
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81 now, cocaine addict in the 1970’S and 80’S. Have PD for ten years, mostly tremor. Am sure of the cocaine connection. [email protected]
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All of the replies are so interesting. MY Theory is at age 14 I almost passed away from carbon monoxide poisoning. Over the years I developed symptoms very slowly until diagnosed at age 60. The first symptom was for many years people kept telling me I walked with a limp.
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Beth, Adam and Mary – do you have any root canals, teeth extracted or suffer from low level abscesses or infections associated with your teeth?
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Over the years I had fillings. I also had a couple of root canals. No teeth extracted but found out this month, I do need to have a jaw tooth pulled. Saw the Xray. I am having no pain, dollars involved, so I am putting it off for a while. Wondering, however, how that might affect me with Parkinson’s.
Had a gene testing with Fox Foundation and no one in my family has had this disease. Is it just from old age, since I have had it since I was 81? I am a cancer survivor, but no radiation or chemo. A mystery.
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I was stationed at Camp LeJeune, NC for 2.5 years while in the Marines. That was 1977-1980. From 1953-1987, Camp LeJeune had the highest environmental contamination ecosystem of any military base in the US inventory of military installations. I believe that is what caused my PD. I am a disabled veteran on disability for this. I have been very fortunate to have an excellent doctor that has me on meds that keep me from displaying any symptoms.
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John, great news. Could you share the medication he has you on? Thanks.
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John,
My uncle was there in the 1950s to early 1960s and lived in the barracks near the drycleaners. He ended up with multiple cancers from it. Sadly, he passed away in 2011.
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“She” put me on 25-250 Carb/Levo 4/day, and Amantadine 100MG 3/day. I was diagnosed 4 years ago, Feb., 2018. I was on Carb/Levo 10-100, and my Dr kept increasing my dosage. I was up to 16 pills/day and had diskanesia(sp?) pretty bad. I decided to see another Dr in the Dallas/Ft Worth area that had been recommended to me. I saw her last November 12, and she changed my meds to the 25-250 Carb/Levo and Amantadine 100mg. Within 48 hours of beginning the new meds, the diskanesia was totally gone. I now drive to Arlington, TX every 4 months to see her, and it is going very well. Most people aren’t even aware that I have PD until I tell them. GOD is GREAT!!!!
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John, you are fortunate the meds are agreeing with you and apparently have helped. I was extremely nauseous on the Leva/Dopa and lost 5 pounds. So now I am on Rytary, the same, just time released. It doesn’t bother my stomach, but my tremors seem worse, and my blood pressure. Amantidine I am familiar with as my pulmonary doctor in SD prescribed it to keep me from getting sick with my lungs, and it worked. I only took one or two and it stopped whatever was making me sick. It worked fine and never bothered me until about 6 or 7 years ago, and it started making me very nervous and shaken. Weird. I would hate to have to take it daily. Funny, how we all are affected differently in many ways. People don’t know I have Parkinson’s. If I am at a gathering and my hand shakes, I make a comment about having tremors. I am in my 3rd yr. I still drive, shop, etc. and I have other serious illnesses. My heart and lungs for one, an esphogus problem, and I am a 28 yr cancer survivor. Will be 85 in Feb. Thanks for sharing your info, and I am so happy for you.
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John, you are fortunate the meds are agreeing with you and apparently have helped. I was extremely nauseous on the Leva/Dopa and lost 5 pounds. So now I am on Rytary, the same, just time released. It doesn’t bother my stomach, but my tremors seem worse, and my blood pressure. Amantidine I am familiar with as my pulmonary doctor in SD prescribed it to keep me from getting sick with my lungs, and it worked. I only took one or two and it stopped whatever was making me sick. It worked fine and never bothered me until about 6 or 7 years ago, and it started making me very nervous and shaken. Weird. I would hate to have to take it daily. Funny, how we all are affected differently in many ways. People don’t know I have Parkinson’s. If I am at a gathering and my hand shakes, I make a comment about having tremors. I am in my 3rd yr. I still drive, shop, etc. and I have other serious illnesses. My heart and lungs for one, an esphogus problem, and I am a 28 yr cancer survivor. Will be 85 in Feb. Thanks for sharing your info, and I am so happy for you.
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Hi, John. Interesting information, thanks. Could you or anyone else tell me how do you cover the night intervals? I am at 9 years in PD now and was taking until 1 month ago: Levocarb 100/25 mg 1.5 pills at 6 am, 10 am, 2 pm, 6 pm and midnight; Entacapol, 200 mg, 1 pill each time with Levocarb, 5 x a day; Azilect 1 mg 1 x day. Now, that worked OK (I had about 1 hr off – tremors, gait problems at the end of each 4 hr interval, which I had is common), but gradually at night it didn’t, because I had 2 x 6 hr intervals (from 6 pm to midnight and from midnight to 6 am), and the off periods were 2-3 hrs long, at the end of each 6 hr interval. Say I woke at 6 am, I had tremors and gait problems which were quite impairing. I saw the doctor and she said to try at night with 1 extended release Levocarb pill when going to bed (11 pm for me). Unfortunately, at the end of the 6 hrs intervals I don’t feel better. On a positive note, I found that doing some bodyweight or Pilates exercises, after taking the pills, accelerates the start of their effect. As well, avoiding proteins, and taking say just fruits with pita bread. So, yes, I’d appreciate knowing what everyone is doing about meds at night. I searched for “levocarb at night,” didn’t find much in the forums, even though I believe some info must be there. Thanks, everyone.
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Beth,
I would love to take Rytary, but it is totally out of my budget. A 90 day prescription costs almost $1400.00. Totally ridiculous!!!!
Best,
John
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As we all are looking for root causes of PD, we can see there are many ways to get to a point where we can be diagnosed. If you have not completed my survey, please do as I look at the oral microbiome as a potential cause. The survey takes 5 min to complete and I hope to share the information with the group once I get 300 to take the survey. I am at 150 and looking for more with PD to complete it.
https://whyrbd.com/root-canal-survey/
Thanks – Rob Diagnosed with iRBD 2019
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I started getting PD symptoms 3 years ago but tried everything until a neurologist confirmed I had PD this year.
Theories as to why?
I think it from being alive
Don’t complain, you may be a role model for someone else who is suffering too
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Thinking about THE cause of Parkinson’s is like thinking about THE cause of cancer. Think instead about the underlying cause of PD symptoms: dying brain cells. Then, think about what you have experienced that is/was killig your brain cells. Candidates for my case inclde ***playing with mercury as a kid, ***using large amounts of bug spray in a game to kill ants, ***using and playing with many other neurotoxic chemicals. Look at the labels of pesticides, herbicides, and the like. Do some research. “Neurotoxic” means “kills nerve cells.” And guess what kind of cells brain cells are.
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Agent Orange exposure in Vietnam. Spent 11 months on the rivers in the Mekong Delta. We were in areas which were sprayed and 100% of the water we used came from the rivers and was contaminated with AO. There are no prizes for knowing the origin of the PD, however the tremendous support system available to us is a gift. In many ways, at age 77, I am healthier than I have been in years because of lifestyle changes made in dealing with PD. The symptoms don’t care what happens. What I do to mitigate them does matter and I am thankful for the abundance of support available.
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Dopamine production in the substantial nigro.. And how this dopamine is used in the subthalmius nucleus is a mystery…the reason this production is shut down is the real issue. Levodopa is currently the only substance that the brain has accepted to the treatment of the symptoms.
We must address the root cause of the dopamine shutdown. -
I believe I have an inherited form of Parkinson’s. My father has had tremors and other overt symptoms of Parkinson’s since his mid-50s (he is now 91). He has not been officially diagnosed, but we have many common symptoms
I was diagnosed with Parkinson’s in my early 60s, but believe that I’ve had the disease for a very long time. In my mid-30s I noticed a change in my gate and other symptoms have occurred over the years. About 10 years ago I was diagnosed with essential tremor, but that diagnosis was replaced with diagnosis of PD a few years later. Levodopa helps, Asda is ropinirole and gabapentin. I also have chronic low vitamin D levels, as do many in my family.
I’m hoping to have genetic testing done with my father this summer and maybe that will provide some answers.
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I’m following the advice of the Parkinson’s Recovery Project.
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I also have Addisons disease and two other autoimmune diseases. Getting Parkinsons shocked me. I have found no connection with these other diseases and Parkinsons.
At times i cannot determine which disease is responsible for my multiple symptoms. I have played highschool and college football and spent 4 years in the military. I worked summers in a steel mill on the charging floor and in the flues under the furnace. I have advanced college degrees and worked in the medical field.
There is just no reason or clues i can find for the development of Parkinsons.
I don’t complain much but i am majorly disappointed.-
Kevin, Knowing where it came from is sort of the booby prize. There is a tremendous support system out there for Parkinson’s patients and their caregivers . . . a support system that will make a difference. Find a local group, do things that will keep you upright and moving. At 77, I have Parkinson’s, it does not yet have me.
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In 2009 I was. just ending an unfortunate decade with undiagnosed non-celiac gluten intolerance — actually an intolerance to the gliadin peptide which, together with the celiac intolerance to the glutenine peptide, covers the whole gluten molecule. People with gliadin intolerance(more common on average among people descended from people living in northern European islands and coastlines), often inherit a gene variant which produces an altered form of the antigen-presenting T cell that allows it to ID and capture for an inspection by other T cells which can put them on the kill list for active processing. WHen the immune system was revved up by another active infection (in my case probably SHingles, the immune system apparently got an all-hands-on-deck message to be less discriminating in ID’ing candidate artive and aggressive foreign invaders; in this situation gliadin is among the enemy peptides nominated for attack. WHich the immune system did, mistakenly treating gliadin as evidence of a dangerous evil enemy, and firing up the whole defensive mechanism. Which includes the production of large quantities of gliadin antibody to be stored away for a future fight with gliadin in the form of wheat-containing gliadin..
Meanwhile, the same gliadin antibody has been discovered to cross-react with cells in the cerebellum, interfering with normal function there. This has been called “gluten atoxia.”
After diagnosis for gliadin intolerance, I learned that the only treatment is cold-turkey abstention, which I began early in 2009. About a week thereafter, I began having inflammatory symptoms — most consistent with the response to wheat allergies. At that point I had no gliadin in store (no wheat in my diet anymore), but the immune system had been toned up for daily battles with gliadin and kept pumping out more; gliadin antibody than ever. The best presumption is that this reached toxic levels, and cross-reacted with neural components that triggered my initial PD symptoms, setting off progression that hasn’t quit yet. In any case my reaction was immediate, with bradykinesia and resting tremor of multiple muscle groups (quadriceps and forearm primarily) appearing over a ten day period. ANd this trigger altered my normal system by further toxic effect, heading me down the not-quite-idiocratic path to 13 years of PD so far.
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While there will be as many different theories as there are people with PD, an observation;
Before diagnosed with PD life was always a rush. Busy here, busy there, found it hard to slow down. Now I am forced to take things slower and be mindful of what I do. It’s been a lifestyle change by being forced to slow down…..
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Before I was diagnosed with PD a friend pulled me aside and told me he thought my job was “killing” me. I had sharp pain in my left shoulder for almost two years and this caused my left arm to not swing when I walked. I believe the “frozen shoulder” was the result of extensive high stress in both my personal life and with my job. Being a Type A person I work hard, was in an office tied to a laptop often 10- 12 hours a day, had a very full personal schedule, slept little, ate junk food, took meds for cholesterol which caused my blook sugar to run high. Constipation was a constant problem. Basically I pushed myself hard. I tried acupuncture to reduce stress and my shoulder pain but it only worked for a short-time so I was sent to physical therapy. The physical therapist is who told me to see a neurologist. This is when I was told I had PD but I never had any test other than when I was given levodopa the symptoms improved. I think the cortisol which results from stress burned out my brain and reduced my dopamine production. I am not sure if levodopa helps or causes some symptoms. I have been treated for PD for over 7 years but in the last couple months my doctor added Amantadine which has helped a lot. This a type of flu med which is supposed to minimize inflammation. Not sure where this will go. My version of Parkinson’s is all about gait/mobility issues. My focus is on limiting anything that creates cortisol and increasing anything that increases dopamine. Does this sound familiar to anyone??
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Christine,
I am an “A” personality also and always on the run, although it is very hard and sometimes impossible now due to my gait and mobility issues.
My first neurologist gave me Levodopa Carbodopa and said, take this, if it helps, you have parkinson’s. It did not help at all, and after a year, I was told to double my Levodopa Carbodopa for a couple of months and, if no improvement, stop it cold turkey. I stopped it and still nothing changed. My new Neurologist believes I have a form of Parkinsinisms and recently prescribed Amantadine in May of 2023. So far I do not see any improvement with it, but I have not contacted covid, had a cold, flu, or anything else. So maybe it does me some good, not sure.
Probably not very helpful, but thought I would let you know you are not alone. This is a very frustrating disease.
Judy
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Kevin, since you worked in a steel mill, have you ever had your Red Blood Cell manganese (not magnesium) levels checked? Manganese is a component of most steels, and inhalation of airborne manganese can cause accumulation in 2-4% of individuals. The RBC manganese test is not perfect for detecting if you have a deposit in the basal ganglia, but it is a quick screening that your general practitioner can do (some hospitals don’t offer the test, but most national labs do).
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Hi Christine, the slept little, high stress, brain always going lifestyle sounds familiar. I don’t have PD, I have dystonia, finger twitching, balance issues, reduced sense of smell, etc. I got over my constipation with the help of a doctor fixing my gut. Fixing the constipation has potential to help dopamine production because you need to be able to absorb tyrosine broken down from protein in order to produce dopamine without L-dopa, and sometimes the gut just won’t do it if it’s not working. I wrote more about dysbiosis here: https://www.dystoniahelp.org/dysbiosis/, if you’re interested.
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As Billy Connolly – fellow Parkie – said recently “it used to be called “Palsy” till
A Doc called James Parkinson took it up…..
i wish he,d kept it to him(@@@@@@@)self!
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