Slow Developing Parkinson's Symptoms

[sandog]

I've been following along the discussions, but am posting for the first time. I'm 76, and was diagnosed a little over five years ago. I'm taking two 25-100 Sinemet daily and two Selegiline 5mg with my morning and noon meals.

My neurologist is very pleased with how slowly my symptoms are developing. My previous doctor wanted me to start with 3 Sinemets for the first two weeks, then double to 6/day automatically. I have a mild left-hand tremor and the common slow-motion effect when taking bills out of my wallet, coins from my pocket, buttoning my shirt, etc. I'm a bluegrass musician, and just last year had to hang up public performance because playing at those tempos became impossible. In addition, I tend to lean forward when looking downward, and have minor perception issues.

I'm really lucky to have this thing moving so slowly, I know that most neurologists encourage higher doses of Sinemet because the science say's that it doesn't in any way speed up the progression of the disease. But I'm of the mind to minimize dyskinesia by taking just enough Sinemet to feel very minor dyskinesias (foot clenching, teeth grinding, body movement).

My doctor has been very encouraging saying, "I really thing something else will get you before Parkinson's does." I can't decide whether that's good news or bad. I'm realizing there's a lot of psychology in being a good neurologist. I've been swimming 3 days a week for 45 minutes since my diagnosis and he says that could be the best thing I have going.

I'm interested in any strategies that others with slow moving PD are finding helpful.

[Hidden]

strategy that I find helpful "thiamine hcl stops the progression forever..." is the promise of Doc Costantini.

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol.

[justhavefun2 in reply to Hidden]

Wow! That’s encouraging! 😀

[Coling in reply to Hidden]

Hi Roy I know that you have explained it before but can you let me know once again your exact daily dose of thiamine hcl?

Cheers mate, from Colin in Australia

[Hidden in reply to Coling]

From the standard of 4g a day I raised mine to 6g a day. I did this for Two week to try reducing my tremor. That level was affecting my brushing teeth and constipation. I lowered to 2g a day.

[jeeves19 in reply to Hidden]

Roy. Do you mean 6mh was stopping you from brushing and causing constipation or improving both of these? Also, did I read this correctly that you now take 2g only each day?

[Hidden in reply to jeeves19]

I am trying 2g a day. Six grams was not ok.

[Skydome in reply to Hidden]

Hi Roy, why not back on the 4g/day dosage?

[Hidden in reply to Skydome]

Looking for minimum dose

[Hidden in reply to Hidden]

4g/day works for me

[jimcaster in reply to Hidden]

ROY - When did you increase from 2 grams back to 4 and why did you go back to 4?

[Hidden in reply to jimcaster]

I don't remember the date. I went to 6 for a time, I went to 2 and at those dose levels I experienced return of symptoms ever so slight. I am now settled at 4.

[jimcaster in reply to Hidden]

Thanks!

[ion_ion in reply to jimcaster]

I settled to 1.5g/day.

[JohnPepper]

I like your attitude! I am not very popular telling everybody about my success with dealing with my Pd. Have a look at my profile or contact me on my website - reverseparkinsons.net and see what you can possibly do to reverse your Pd symptoms. Don't let anybody tell you that it can't be done, because it CAN!

[Chaise in reply to JohnPepper]

Dear John thank you so much for your book and advice on mastering PD. I am trying to do all that you reccomend and so far seem to be slowing the progress down.........hope you come back to NZ one day......again THANK YOU!

[JohnPepper in reply to Chaise]

Hi Chaise. If you look inside the cover you will see my email address. Or look at my website - reverseparkinsons.net and contact me.

[grower]

Love your smile and attitude. Long may you hold it at bay, exercise surely seems to be the key to that. Cheers

[Kaykaykay123]

Hi I have very mild parkinson s too.I have a right had tremor and drag my foot a little.My main symptom is stiffness and pain in upper back.I do Pilates and aqua aerobics three times a week.This has really helped to reduce the stiffness

[4000Nights]

My situation is similar... 74, diagnosed 4 years ago... take Azilect to slow progression, Sinemet 3 times a day to eliminate / minimize symptoms... My movement specialist neurologist says my PD is slow progressing. In fact I seem better than I first did. He says if I live long enough I might need a cane when I walk. I am looking forward to getting myself a really cool cane.

I think the real key is to keep walking on that beach I see behind you. I live in the City and walk everywhere. Keep on moving... moving... moving. Keep exercising. For me shadow boxing, push ups, weights.

Some supplements seem to help me be on all day... mannitol, D3, B12. It doesn't hurt to try a few and see if they help you.

Bottom line: We probably have to worry more about a Zombie apocalypse than PD. But keep on moving... moving... moving.

[2Bertie]

Moving is essential. Have you tried rock steady boxing? I do that a couple times a week and walk every day. Besides some yoga, weight lifting and lsvtbig which is great for keeping you limber and moving. Still working on the freezing of gait. Started on the bit B 1 and hoping that helps . also doing a study with parents.com/fun/arts-crafts... with the speechvive which is a device that yabbers in your ear so that iyou have to speak over it. My husband has hearing aids and I spea..

[2Bertie in reply to 2Bertie]

Sorry about that . my computer randoy spit out a project my grandson and I were doing. The trial I am in is with Purdue univ in Indiana and

They send you a device that goes over your ear that makes jabbering noises that forces you to speak louder. It works but my ear is small so I have difficulty keeping it in. They need to redesign it. It is called a speechvive. Anyway keep up the good work with your exercise. Use it or lose it!

[Kellypeters]

Good on you! I love your attitude! I’m new to this. My husband was only diagnosed in February. But when I get stuck into something I really go for it so I have been researching many hours every night. I’m determined to slow it down as much as I can. ‘ Over my dead body ‘! kind of attitude😁!

So far exercise is my number one defence. From what I’ve read it needs to be intense. 60 - 80 percent of your maximum. Also making big movements that stretches out your body and exercise that also I loves your brain like dancing is also helpful. We were told 1 1/2 a day but he is 41 but do as much as you can.

2. Medication - He takes sinemet 25/100 three times a day but I think your instinct to retist increases is probably right. It seems finding the right medication and dose is a challenge for everyone as well as the right dr. No solution really just work at it and research. Know your options. We haven’t seen neurologist again since diagnoses so I have a lot of questions! Why that dose is the first question!

3. Suppliments- I have a list of about 30 that people have recommended and I’m slowly researching them all. We started about 9 but then stopped when I emailed dr contantini.

4. Thiamine HCL - we are trying it in tablet form currently 2g a day. And stopping suppliments to see results as advised by the doctor. See the post about it and read everyone’s experiences. Early days for us but it is the most hopeful I’ve been so far.

Keep fighting! Like your doctor said don’t let pd be the thing that gets you!

[sandog in reply to Kellypeters]

Thanks for your comments Kelly. I break those Stinemetz pills in half and take a half or a whole depending on my activities. I’ll look forward to hearing more about the vitamin B program.

[Kellypeters in reply to sandog]

Ill keep you posted!

[Pegita]

I'm doing Tai Chi twice a week and ballroom dancing once a week. Helps with balance and coordination. Improves my focus and responsiveness in conversations

[Chaise]

Hi Roy i was diagonised 2.5 years ago. So far my neuro dosent see the need to put me on medication. I am not keen to go on any ...... i read John Peppers book and follow his advice and it seems to be working. I excercise regularly boot camp twice a week. Walk daily and make sure a swing my arms. I have stiffeness and shake in my left arm, with slight tremor in my left leg. I do take COQ10 AND b Vitamins to keep my engergy levels up.........hope my account of dealing with Pd helps ......sense of humor goes a long way too.......!!

[S70AWD]

Not to be discouraging, but when I was diagnosed, I was told about the "five year honeymoon" during which PD progresses slowly. But the honeymoon doesn't last. It was just around five years when the effects of PD intensified and my happy little world came crumbling down. The tremors alone are enough to make you crazy. Everyone is different and I hope this doesn't happen to you but there seems to be enough substance to sustain the 5 year theory.

[Littlesky]

For sure, everyone's story is unique. I'm 73 and in my 9th year post PD diagnosis and probably 11 years since first symptoms. Tremor dominant. Still minimal symptoms - no sense of smell, right hand and right jaw tremor, right hand typing weak and slow. That's it (knocking on wood!)

I take only one Azilect and one Rytary each morning. Occasionally, especially when public speaking, I'll take 1/2 Sinemet 25/100 in the afternoon - still can't tolerate a whole tablet - to calm the tremor. I don't eat meat or sugar or gluten. Try to eat organic and lots of fresh veggies but I travel to Asia for work and it's tough to manage diet. I take a long list of supplements as my years in China have gifted me with Mercury toxicity among other toxins and I'm working with a functional medicine doc to slowly cleanse. I'd like to say I meditate and exercise (walking and yoga) daily but more like 3-4 days each week. I started Thiamine HCL 1 gram at Dr. Cosantini's advice on July 9. It's still too early to be sure but it definitely feels like my tremor is lessening.