Wondering What to Do About Encroaching Muscle Stiffness

Currently taking:

C/L 50/200 3x/day, Controlled (time) release

Seligilene, 5mg, 2x/ day

NAC, 400mg, 3x/day

Glutathione, nebulized, daily

Meds I do not tolerate:

Dopamine Agonists, Amantadine, Nilotinib

Everything else has been livable, but the increasing muscle stiffness is troubling. I need to do something - if not it is likely to just get worse. I tried upping my dosage of C/L to 4x /day and my body just did not tolerate that at all – I had nausea and other GI issues. I am interested in hearing from anyone who has been able to remedy the muscle stiffness problem within the stated medication constraints.

Also, I do at least one half hour of yoga upon arising. In the afternoon I am out hiking and rock scrambling for over an hour most days.

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23 Replies

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  • Curiously, I was having exactly the same issues in late winter 2013. Read the first 3 paragraphs of Coconut oil has Improved my Life healthunlocked.com/parkinso...

    From my latest post, I don't expect that CO will help every PWP, but for some reason (perhaps our recent exchanges) I have a strong personal desire that it will work for you.

    A word of caution. I have scientific evidence that CO is very unlikely to help you if you take statin drugs: Statins vs. Coconut Oil healthunlocked.com/parkinso...

    It has been 4 years since I started CO. I have been developing occasional freezing and some balance problems, but that awful stiffness has not returned. I have found that lowering carbs, especially those with a high glycemic index seems to help. I suggest Dr Newports latest book: BOOK REVIEW: The Coconut Oil and Low-Carb Solution for Alzheimer's, Parkinson's, and Other Diseases by Mary T. Newport (MD) (2015) healthunlocked.com/parkinso...

    Wishing you the very best.

  • Yes, statin drugs are bad news. Cate Shanahan, MD has done some very interesting research on fats and carbs in diet. amazon.com/gp/product/12501...

    She also has a number of youtube videos.

    The ketogenic diet has been shown to cure pediatric epilepsy:

    amazon.com/gp/product/09829...

    Concerned about the calorie intake though. Got enough of a bear belly as it is. Will get the Newport book and see what she has to say.

  • Your body cannot store medium chain triglycerides (CO); it converts them to ketones or passes them. BUT, it can use ketones for energy, and thus leave some unused carbs, which can be converted and stored as fat. End result, you should be careful or CO can lead to weight gain.

    I have never tried a ketogenic diet, I just watch carbs and I run about 10 pounds up from what I prefer (at my age 78, my doctor calls it Flu insurance). This is discussed in Dr Newport's book. You are wise to be concerned.

    Passing excess CO seems to cure constipation, a benefit for many PWP.

  • I switched to acetometophin.

  • For about 1year I have been taking one packet of Emergen C mixed with water every day. I used to have really bad pain & stiffness in my thighs & groin. After about 3 weeks my pain went away & hasn't come back. It also gives me a little more energy. It consists of 1,000 mg of Vit C, some B Vitamins, Magnesium, & Electrolytes. Has lots of antioxidants which are good for PD. Both my internist & neurologist said it was fine to take.

  • I've started to have the same, stiffness and right leg freezing !!horrible feeling!! what are you pd meds? Thanks

  • Oh yes, I am familiar with Emergen C. Might even have some. Will give a try - that would be a great fix if it works for me.

  • I hope it helps. Reminder, it took every day for approximately 3 weeks before it finally started working.

  • I take 4-5 Parcopa (sinemet that dissolves on my tongue). 2 Azilect and 2 Amantadine. I'm 59 and diagnosed 13 yrs ago. Most people can't tell I have PD. I've been doing Rock Steady Boxing for 10 yrs. As far as other supplements, I take Krill oil, vit D3, Protandim, 3 Xocai Chocolates & 3 Tbls Coconut oil per day, but the Emergen C is what helped the stiffness/pain.

  • talk to me about nebulized glutathione? how long have u taken it for & how does it help symptomatically? i just began nasal spray glutathione...

  • I really can't say it's doing anything for me now that I am having signs of progression. Been taking a couple of months. Doing it on the idea it is supposed to be lacking and nebulized supposed to be a way to get it absorbed.

  • I did some research on this. The most recent trial is Phase IIb showed promising results with 600 mg of intranasal glutathione via spray 1 ml of study medication (or placebo) up their nose three times daily for three months. The study tested two doses – 300 mg/day or 600 mg/day of intranasal glutathione and 600 showed better results. However, the placebo group benefiting equally as the high-dose group. So it is not being taken seriously. Infusions showed improvements but also complications. If the intranasal doesn't work better than placebo I don't know why a nebulizer would.

    There are no other glutathione trials at this time.

    As an alternative to glutathione, NAC is being tested as it passes the blood brain barrier (best if injected). journals.plos.org/plosone/a.... Intervention: IV NAC infusion: 50mg in 200ml of D5W over one hour 1 x per week Oral N-acetyl Cysteine - 1 600mg tablet 2 x per day (on days IV N-acetyl cysteine is not administered). Compared to controls, the patients receiving NAC had improvements of 4-9 percent in dopamine transporter binding and also had improvements in their UPDRS score of about 13 percent.

    The current NAC trial completes Mar 2018. I am curious why we aren't seeing NAC infusions for PWP.

    [Acetylcysteine is the nonproprietary name for the N-acetyl derivative of the naturally occurring amino acid, L-cysteine (N-acetyl-L-cysteine, NAC). Acetadote is supplied as a sterile solution in vials containing 200 mg/mL acetylcysteine. The pH of the solution ranges from 6.0 to 7.5. Acetadote contains the following inactive ingredients: 0.5 mg/mL disodium edetate, sodium hydroxide (used for pH adjustment), and Sterile Water for Injection, USP. Acetadote doses were prepared for each patient by a trained study nurse. The dose was 50mg/kg mixed into 200ml of D5W infused over approximately one hour 1x per week. Subjects took the 600mg NAC tablets 2x per day on the days that they did not receive the IV NAC.]

  • what about cat claw someone posted up for lyme. i looked it up and good for arthritis ...

  • Speaking of coconut oil, a zero-carb diet seems to greatly reduce my "non-PD" anxiety a lot. My theory in relation to PD is this: like cancer, "PD-infected" cells (a-syn misfolding) seem to use a less-efficient method of burning sugars. A near-zero carb diet (<25 grams per day means no sugar, bread, rice, fruits, or vegetables) causes your body to switch to burning ketones which uses a different pathway than the sugars and provides more energy to the brain.

  • Interesting. I have just started studying the work of Cate Shanahan, MD. She has a lot of videos up on YouTube and has just published a lengthy book I am working my way through. As a result of both her own illnesses, her research of the medical literature, and her cure, she finds that there is nothing unhealthy about consuming naturally occurring saturated fats. She's even got some athletes switched over to burning ketones.

    Interestingly, a ketogenic diet has been shown to be effective for pediatric epilepsy.

  • There are tons of good books on ketogenic diets, including several on athletic endurance and performance. Most include a blend of useful info, enthusiasm, and science.

    For hard facts on relevant science, I prefer the writings on Steve Phinney, a physician-scientist who has spent 35 years studying diet, exercise, fatty acids, and inflammation. He has held academic positions at the Universities of Vermont, Minnesota, and California at Davis. He received his MD from Stanford University, his PhD in Nutritional Biochemistry from MIT, and post-doctoral training at the University of Vermont and Harvard.

  • What do you eat?

  • For a ketogenic diet the idea is no carbs or sugars. Green vegetables ok, and meat, eggs, dairy, maybe soy protein.

  • Oh, that would be hard! I love carbs and sugar. I have a very healthy diet but I do start the day off with a little sugar in my coffee and I love fruit and dark chocolate. Things that make the world go round. Thank you for clarification!

  • Others have given similar reports. It takes discipline! Try to keep some green veggies.

  • Did you try taking a combination of C/L immediate release and controlled release together instead of increasing your controlled release dosage only , I know it worked for one of my friends father

  • Thanks for the thought. I have tried IR and it does not agree with me .

  • You are welcome

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