I am nearing the two year anniversary of my PD diagnosis and have been pleasantly surprised at the relatively slow pace of its progression. I really only have three symptoms which bother me in varying degrees: (1) Terrible handwriting; (2) Very poor sense of smell; and (3) Toe curling (dystonia).
Mostly because my symptoms are mild, but also to better assess my symptoms and avoid possible side effects, I haven't taken medication of any kind. I do take a variety of supplements and I now exercise 4-5 days per week for 2 hours.
Have any of you found medication to be helpful (or unhelpful) for handwriting, sense of smell or toe dystonia? If medication won't solve all or any of those issues, I'll stay away from it until I have no choice. On the other hand, if some type of medication helps any of those symptoms (especially dystonia because it limits me to a stationary bike instead of jogging), I might swallow my pride...and more pills. 😊
Written by
jimcaster
To view profiles and participate in discussions please or .
41 Replies
•
It takes five years before one can judge progression.
Well Jim, I’m heading towards my 7 year and I applaud you for being able to continue with out medication. I realized last week how important my meds are for me and my dystonia , tremors ect. I normally wake up , take my handful of meds I have ready next to the bed get up and go out and what used to be my run , is a walk for right now. A day last week I could barely get down the street , my body was freezing and locking in place , I had to fight for my walk and was very difficult. I was a little scared , I’ll be honest . What I realized as the day progressed that when I took my meds that morning I had missed one of my cd/ld in my little case( normally take 2 25/100 ,Cd/ld, azilect, Modifinal in the morning). So it made me realize how much my meds are important for me. I always knew I needed them for my dystonia and everything else but this just gave me another wake up call. Things are progressing for me , anxiety added in now , which that wasn’t part of my life before. I continue to forge ahead and my meds help me continue. ❤️ Karen
Medication actually makes my dystonia worse, although for most people it improves it. I was pleasantly surprised to find exogenous ketones significantly increased my sense of smell. C/L does help my handwriting but mostly from tremor reduction. Personally being someone who got dyskinesia something horrible on less than starting dose of meds in less than two years - if you don't need it don't take it!
In response to "digit" dystonia (index fingers, and a couple toes), quinine that is in tonic water (suggested by my Mayo internist) and magnesium seems to help quite a bit.
I just use it when my toes curl under and feel very uncomfortable. Also lately I've been getting RLS in my calves and I've been using the massager and after that I've been spraying it with magnesium oil and it seems to work.
It may be the massaging rather than the oil. Meanwhile, Theraworx is snake oil in my opinion, and their marketing show that. Like nail soup.
Meanwhile, what I call spasms in my rib area, index & pinkie fingers, arches and toes receded quite a bit with magnesium pills and lots of diet tonic water, took about 2-3 months. Been at lesst 6 months of relief now. These were tremor, and hyperextension in the fingers. Don't say why, just that I changed nothing else in that time.
No, it definitely is the magnesium oil that helps. My husband's back goes out , after spraying his back the next morning he is way better. Well, it sounds like you found something that works for you too. So that's good.
Mine's less greasy. Ryzlot thinks bumblebees can't fly so not to bother. I say if it works, it's better to talk yourself out of it, being right is better than solving your pain. Probably a Calvinist.
Theraworx is homeopathic; magnesium oil, at least the one from Swansons Vitamins is harvested from an ancient underground Lake. They might work differently.
My wife's Dr suggested tonic water so I did some research. There are recommended dosages for quinine as a therapeutic level, and yes it is in tonic water - but I calculated you would need 8 or so quarts a day to reach the level. She started on magnesium and that worked. Also look up aspartame side effects!
I also had immediately questiined the dose in the tonic water. He shrugged, nodded, and said to try it anyway. He also said it's impossible for bumblebees to fly, but they do. Something to do with their having failed to read the engineering studies that proved they couldn't.
Quinine and Bombay sapphire, or preferably Tanquary export cures all known ills. The biggest crisis we have is covid19 rationing rules mean only 2 packs of fever tree per shop.
I have just started medication. My tremor was bothering me. The loss of rigidity I didn't realize I had was a major bonus. I am pretty sure it won't help with sense of smell, but should help with the other 2. On balance I am very positive about it although I maybe need a higher dose.
I'm a bit disappointed though. I was hoping sense of smell was one of the things B1 might improve
I was dx'd back in 2013. It was a few years before I went on the meds that my neuros wanted me to take. I used to take a small amount of immediate release (IR) Sinimet first thing and some more extended release (ER or CR) after breakfast. Last Autumn I started getting mild dyskenisia in my right hip so I stopped meds entirely for 48 hours and discovered that yes they were causing the unwanted involuntary twist movement in my hip since it completely stopped after washout but also that my tremor became much worse. So the meds had been working better than I realised! Until the dyskenisia :-(. I abandoned the IR Sinimet and now take CR every 8 hours and that is a good compromise. As others have said exercise is as good as medicine (but without the side effects) so working out every day definitely fills a gap for me in moderating symptoms - I see that when I miss a day! So CR could be worth a try despite its rather erratic uptake.
It's good to know the slow progression. As rightly said in a reply that it takes five years to actually see the damage. Moreover, let's not bring negativity in the discussions. Brain is such an organ that work on your own thoughts. You set a bar, push the brain to achieve it, it will definitely try or even succeed. Hence more you feed the brain with medicines, more lethargic and dependent it will become and will not produce dopamine at all unless fed with medicines.
Brain has to be oxygenated and detoxified to stop further death of brain cells. vigorous exercise, Jogging, ti chi, aerobics, yoga, music are the few to compel brain to inhale oxygen and start making dopamine.The more you make your heart to pump, the more it will produce dopamine. I feel that only rasagellin 1 mg should be taken once a day and no other medicines.
Keep your stomach absolutely clean by drinking lots of water, eating fibre based food and avoiding heavy, spicy and sticky food with one day fast in a week. I know that it is difficult to do lots of excercise at one go hence to be done as per the convenience and available time slots.
For cramps- B1, B6 and B12 tablets named neurobion can be taken - one tab thrice a day.
For handwriting- write two pages daily in two line writing book within the space as we used to do in our school days, it will reach to its original size and shape in few days.
Smell- warm few drops of mustard oil and inhale it's hot vapours. It will improve.
My husband dx 5 years ago, although had symptoms before that, loss of sense of smell, stiffness and lack of dexterity. Started on Modopar at a low dose and kept on similar dose for 4 years. Mostly symptoms were controlled, still exercised started taking B1 about a year ago. Tremor did begin to be an small issue, but not severe, dyskinesia after meds was the worse symptom.
Added in Azilect 5 months ago then Amantadine and dyskinesia mostly gone. Toe curling varies, taking magnesium and other supplements it’s hard to know whether they make so much difference or not.
So having had PD for about 10 years progress seems to be slow but hard to know as we only know a couple of others with PD.
I would suggest if your symptoms are interfering with your life seek and ask advice from a Neuro and try and see if they help, usually you start on a low dose.
Hi i stayed off meds till july 2019, dygnosed November, 2017,my nurse said it would help, i haven't noticed it helping much, it does not seem to help dystonia, some say meds, some say not, exercise is vital, especially rock steady boxing if you can find it, stay safe
Try botox shots for the toe curling. Ask your neurologist about it. There is help from the botox company to pay for it, too. I get shots every 3 months. They usually offer some relief. Some months not so much.
Jim, Sherry is correct . I forgot to mention that in my post above , I too get the Botox injections lower leg and bottom of my feet every 3 months. Insurance pays for mine. Karen
Am I missing something or did you just write a lot of words to say you have discovered something very helpful, but you won't simply say what it is? If I am supposed to ask what it is, please consider this as my request. If you want to respond via private message, that's fine.
Sounds scam-like to me. He says it's not allowed to advertise on this forum but many share things that have helped or been tried. To me it is very suspicious when someone is coy about a treatment that fixes multiple things.
WTH! If someone has something great , let’s hear the name. SCAM to me as well. I know staying positive and finding gratefulness in every day is helpful but I’m sorry there’s those days that we are angry and throw our own pitty party! Damn it!! Stay safe and happy. ❤️ Karen
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Why would different brands of mannitol affect me differently?
Sense of Smell: Could “olfactory training” restore it?
No PD Symptoms but still have PD
Effective medication for dystonia as first symptom?
