I’m a 67 year old singer/songwriter... played music my whole life. About a year ago two of my fingers started moving. It felt kinda weird but didn’t bother me enough to investigate what it might be. Last Thanksgiving my hand started shaking. Thought I had essential tremors, but in just a few weeks my arm and hand started tremoring when relaxed and my wrist has started “ratcheting” when I use it. Not good for a guitar player. When I wake in the morning my whole body is shaky. My breathing is starting to get “unsmooth”. I don’t have an official diagnosis yet, it’s taking forever to get a neurologist appointment in my area but I’m pretty sure it’s Parkinson’s. I am freaking out about it and hoping this group might help either in healing it or dealing with it. Thanks for hearing me.
Thanks for letting me join this group - Cure Parkinson's
Thanks for letting me join this group
Babareeba,
Welcome to the forum! I think you will find a lot of useful information and helpful forum members with years of experience about PD here.
I am curious whether you have loss of ability to taste food or smell things or constipation? Your symptoms seem to be coming on kind of fast.
Art
No taste or smell issues and no constipation. Not looking forward to that 
Those are often symptoms in PWP that show up well before (years?) diagnosis. Not everyone, but fairly common.
Art
My first symptom was the tendency of the third and fourth toes of my affected foot to start cramping. I believe Michael Fox's first symptom was odd behavior in a pinky. So this poster's symptoms are not unusual for initial Parkinson's symptoms.
Glad you found us ! This is one of the best information places I have found..and they are kind, supportive...and they know a lot,!
Diagnosed 2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Do you have any suggestions re constipation ? 4 gms of B 1 does the trick...most of the time, but I can only take 1.5 gms a day, otherwise I feel worse.
Thank you
I don't know if this will help you, I think most of what I have read says that CoQ10 does not help much with PD & I suspect I have MSA or pure autonomic failure. I was severely constipated for around 2 years, then I started taking MitoQ, a CoQ10 derivative, after I started having bouts of postural orthostatic hypotension (faintness on standing). I went straight for MitoQ since it scared me so much (rather than trying cheaper CoQ10 first). The MitoQ seems to have fixed both symptoms. I take it in the morning with a turmeric extract+piperine supplement; I figure the piperine might help with absorption (they sell CoQ10+piperine combination supplements). At first I had some flatulence issues, then I went on a probiotic for a few weeks and that cleared up. I don't use the probiotic anymore.
Hi, and a grateful thanks...will try MITOQ, I've been on CoQ10 for yrs for
general energy & heart health. I was interested in seeing that this helps with hypotension, this wd be an added bonus, since I have that too, but mild form !( added salt to my diet). I currently take cur cumin with pipeline, I guess I cd still take that..
I don't know if would help with general hypotension. I took it not with the expectation that it would clear up any specific symptoms, but in hopes of just slowing things down. Later I came across a post on an MSA forum by a guy who also had his postural orthostatic hypotension go away after starting CoQ10; I don't know how much he was taking. I take the turmeric extract (Gaia Herbs Turmeric Supreme) for the same reason - just to try to slow down progression. Piperine is interesting in that it is not just a bioavailability enhancer, but has its own effects on the brain/nervous system (well, rodent brains - that's what most of the research is on, anyway).
Best wishes - hope you find something that works for you.
Thank you !
I am having outstanding success with 3 or 4 Iodine drops taken in a small amount of water each day, constipation is now a thing of the past.
Can you tell us what form of iodine you are using and what percent it is?
Art
Liquid Iodine which I bought online.
My brand is Clinicians
Iodine Oral Drops
(250 mcg/drop)
Drink lots of water
1-2 gal per day
Dr said laxatives simply keep your gut wet
Some work that way - the osmostic ones, some laxatives are bulk forming, and others are classed as stimulants. Then there are stool softeners, which are supposed to help things on the way out. Both osmotic and bulk forming laxatives need to be taken with lots of water. High fiber diets also require some increased fluid intake, though food often comes with (e.g., a bowl of bean chili).
I tried em' all - nada. The nerves in my gut just didn't want to fire (sometimes stimulants worked, but it's not good to take those all the time since they create dependency). I still eat a high fiber diet though, since there are many health benefits.
Welcome!! You will discover a wealth of information and wonderful people too ! Fear not!!😊
I’m 61, diagnosed with PD 4 years ago, played guitar since I was 11. When I was first diagnosed a tremor in my right hand made it impossible to play songs that required fast strumming. When I started on Mirapex, and later Sinemet, I could play again, though with a bit less dexterity. BTW, Mirapex had some lousy side effects, and I’m off that for good.
So while I hope you don’t have PD, a positive diagnosis doesn’t necessarily mean an end to your guitar playing.
If you don’t exercise regularly, START NOW! If it is PD, exercise will slow it down.
Regards.
71 dx 2 years ago. Amantadine, supplements and MM but still considered stage 1. Right side tremor and weakness. Acoustic Guitar - 50 year serious finger style hobby. Lost some dexterity but try very, very hard to relax, and at times can still play well. Strumming and speed definitely effected. I start very slow and try to build speed by practice patiently. If having a bad day I just stop. I do use Mucuna on occasion but can’t truly evaluate benefits with the guitar playing. Sometimes good + sometimes not. I do exercise regularly and know it’s a benefit fore sure!!!
Wait for your diagnosis, you may be surprised. If you have the dreaded pd then do some research into high dose vit B1 as promoted by Dr Constantini from Italy ....see you tube and articles. I have had pd for over six years, and went on Dr Constantini regime last September...what a difference it has made. I am going to hospital for my annual check on Wednesday, and it will be very interesting to see what they think. Also fill your days with things and prop,e you love, eventually you will find it is not the first thing on your mind. Good luck
Berylhorsey1,
Please let your doctor know what you think HDT is doing for you, because that is one thing that Dr. Costantini would really appreciate! He wants to get the word out about HDT through whatever means possible.
Thank you!
Art
Hay there,i am new here,i just read your letter,and i am sure your life has changed in so many ways,that you had to do one step at a time .In the begging it was so over welming,and one thing led to another what's shacking! and why?I am so pleased with all the wonderful replys from everyone,it really makes you think.So if you can ,just say I have to step over it.as many times as you want ,and do it because you can.June 2020
My reply to Hidden is just above this June
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