Parkinson's Movement
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So glad to find you!

So glad to find you!

Hi there. I'm Mary Jo. So glad to find this group. I'm already excited to try some new things you have all mentioned in your posts. I posted my big story in my profile if anyone wants all the usual PD details. The short version is I'm 62, live in Kansas, diagnosed 8 years ago, although symptoms began in 2008. I'm high functioning, live alone, and don't look like there's a thing wrong with me. Meds: Sinemet 6 tabs/day every 2/1/2 hours waking hours, which has proven to work the best for me. Also on Exelon patch and Amantadine. About a month ago I added Mannitol with some pretty good improvements in cognition, attitude, my voice, constipation, a few fine motor issues, that have really felt like huge baby steps of hope! (Although it has not impacted the tremors at all... Guess it can't be asked to do EVERYTHING!) Curious to test out the Thiamine after I've given the Mannitol a bit of time. Thanks for having this group!

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Welcome! You sure sound enthusiastic! We're glad to have you in our group. My name is Debbie & I was diagnosed 14 yrs ago at the age of 46. I take 4-5 Parcopa (dissolving Sinemet) per day, 2 Azilect, & 2 Amantadine. I've been doing Rock Steady Boxing for 11 years & most people can't tell I have PD, but I think more so in the last year. Have you had any side effects from taking the Mannitol & how much do you take? I've been thinking about trying it.

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I started with one teaspoon per day and upped that to twice a day but went back to one as it seemed my usual dyskenias suddenly got bigger. Whether or not that was the Mannitol, I don't know, but I went back to once per day and that seemed just right. I have heard others say they take one tablespoon in their coffee in the morning. One side effect I heard mentioned was diarrhea, which - guess what - translates to a Benefit for those of us with chronic constipation! I have been able to quit my daily Mirilax! Bowel movements as close to normal as they've been in years! I have even discontinued my anti-depressants, which I believe now, only made me more depressed! My attitude and energy are so much better! My quandary now is that for all I have heard about Thiamine, I would certainly like to give it a try as well, but when? I've been on the Mannitol for a month or so. Do I wean off the Mannitol before taking the Thiamine or?

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it Is not a problem the contrmporary use of tiamin with mannitolo

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Ciao sono un paziente di Costantini anch’io dal sett 2015, una cura “meravigliosa”. Volevo chiederti che tipo di mannitolo si trova in Italia e che dosi all’incirca usi? grazie per l’aiuto.

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Can anyone translate this into English?

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i only ask where find mannitolo in italy and use

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I don't know specifically but in the States I bought it from Amazon. Do I understand that you are doing the Dr. Costantiti plan plus you are thinking of adding mannitol? I would be curious to hear your results.

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I have been using 1 heaping teaspoon dissolved in my morning drink.

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tarsalation:

"Hello i am also patient of Dr Costantini until september 2015, a "wordefull" care. I Want to ask what kind of mannitol we can find in Italy and dosasge you use? thank"

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Hello, I am a patient from Costantini myself since September 2015, a "wonderful" cure. I wanted to ask you what kind of mannitol is in Italy and what doses about uses? Thanks for your help.

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Personal question laglag....

Did you experience any dramatic off times during your monthly cycle and menopause ?

I'm having a very difficult time

Any help is appreciated

Thnk u

C!

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I had headaches a week before, but eliminated, or cut back, on sodium (especially processed food) & it helped a lot. As far as menopause, it happened the same month, 10/2008, as I had breast cancer, when I was 50 (10 yrs ago). Why do you ask? Do you think it's somehow related to PD?

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During ovulation

My meds tend to be ineffective

Some months being worse than others

The past few days have been terrible

This past Sunday & Monday , for example , I had 2-3 hours of ON time...and not consecutive

The OFF times r dibilitating

There's hardly any research regarding this ... in fact all I can find are articles that confirm off times are more prevalent during ovulation

But no fix ...,

C!

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I kind of misunderstood your question. I don't believe I had longer off times during ovulation. If I did, it wasn't noticeable. But, maybe something in your diet is affecting your off times?

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No it's not diet

It's clearly hormonal

It's been somewhat less severe since going on oral birth control

Hmmmm maybe I should go on a stronger one?

Thnk u laglag

Be well

C!

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I think I misunderstood your question. Since it was

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Hi I’m Sue - a Newbie

Currently trying to stay in denial for just a bit longer. Still deciding if i should start taking sinemet again. 🙄 I’m glad to be in a group and hear about others experience and guidance.

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I didn’t tell anybody about my disease for several years. My daughter and my sister knew . I guess I was so fearful Of what everyone would say or think. But as my tremor became a little more apparent I figured it was smarter to tell people rather than have them think I was drunk or high or something worse! What is holding you back on the Sinemet?

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I’m not sure - worried about getting side effects. Thinking that walking slowly and having to use stair rails to go up or down my stairs isn’t so bad? 🙄. I know if I keep taking it it will be Sony I will always need. Having surgery next month and not sure if it’s good to be on those meds and anesthesia.

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That is a valid question. I check with your surgeon as soon as possible in case they need to wean you off anything before the surgery. Good luck with that .

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I have had major back surgery twice, they did not

need me to stop taking my Sinemet tablets.

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I would say take it when you need to control symptoms but not before. Eventually it becomes less effective and you'll need more and more, which increases the potential for side-effects. I actually wish I hadn't taken it from day 1 when I hardly had any symptoms 11 years ago. Now I'm getting the dyskinesia and need something else to relieve it. But definitely consider taking it if your symptoms are starting to interfere with your life.

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Thanks for your input! That’s exactly what I was thinking.

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This is so true, Dave was up to 21 sinemet per day, but with taking it extremely slow, he is now down to 7 per day. Tremors are a little increased but overall its been a good decision to take him back to the 7. Not sure yet if we will go any further. I say we since it is a decision we both make, the caregiver and patient must always being working together. We also make some of our own decisions, after some research on line, then take the steps slowly and then let the doctors know what we are doing. So far we have been assured by our doctors that we are doing well. I see Dave more than the doctors and I have to live with him. This may not work for everyone, but it works for us.

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I think it’s smart to see what works for you. Drs prescribe based on diagnosis- pts need to find out the best med that works for them.

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Two dr. approaches to beginner meds: go ahead and take or hold off until absolutely necessary. In view of the relatively short life of a lot of neuro drugs (4-5 yrs), we chose to wait and used Zandopa successfully for years. Takes a lot of caps but better than having the sinemet effect run out or bring on unwanted side effects.

I spent a lot of time stuffing gel caps with Zandopa. They probably have caps now...taking dopa in any form can make one nauseated so capsulating the powder helped us.

Read on gut connection, SIBO and Keto diets, probiotics, coconut oil for energy, supplements of all kinds.

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I just got Dopa Mucuna and L-Tyrosine from NOW manufacturers. Anyone else use these??

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We used Zandopa. Tyrosine, like most other stuff, is anyone’s guess without lab results.

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Just be sure you tell your surgeon and anesthesiologist about your PD and your meds. Do NOT decide what to do yourself...you docs will not want your symptoms to kick in right in the middle of the surgery and need to be prepared to take care of that eventuality. Our experience was to schedule the med just before surgery and the staff will put any Parkie on a tight starting schedule to get you in and out before the med wears out. If the surgery is long, docs will be prepared for that.

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Not on sinemet but I will let them know if PD

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Parkie

Best wishes for your surgery. I do want to add I hope the surgeon is not trying to treat a PD problem with surgery, all to common. My neuro mentioned hip replacements and shoulder surgery and also back pain surgery. All likely to be relieved with levadopa, worth people. trying first I reckon.

insights.ovid.com/pubmed?pm...

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It’s for carpal tunnel- wrists. Not sure the idea of anesthesia is good at this point. But I have severe numbness and am dropping a lot of things constantly.

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forum.parkinson.org/topic/1...

You might be interested in this link. It doesnt say dont have surgery but it does say levadopa often can help the symptoms. I had ulner nerve symptoms tingling and numbness, in my first year diagnosed. It has settled now.

Best wishes

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There is no rational reason to not take sinemet. True there is a small risk of side effects but the good far out weighs the bad. The side effects are temporary and go away when you stop taking the sinemet. I have been taking sinemet for 3 years. I had what i thought was bad side effects at first but very little now. Sinemet does not become less effective over time it still does it's job but we just loose the ability to use it. Take your meds you will be glad you did.

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Welcome

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Welcome

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Welcome Mary Jo🙂

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It's nice to know you are in Kansas City, KS. My daughter-in-law grew up there and her mother is still there. It is a beautiful city and area. My husband and I lived in Lawrence while he got his Phd. He was there 4 years but I was there the last 2 years. I will be diagnosed 3 years this February. I don't look like there's anything wrong with me either , but I do think my handwriting is getting bad again. You didn't mention that you exercise but if you've been reading this site you know that that seems to be the most important thing we can do for ourselves.

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Funny, I'm actually in Topeka but figured no one would know where the heck that is! I followed my daughter here when she took a job as an orthopedic trauma surgeon 2 years ago. So great to be near her after spending years living in Denver while she trained in Kansas and Missouri. About the exercise, you're absolutely right. For the last several years I've walked 3 miles a day most days of the year. Use the stationary bike and some free weights in addition. I'm sure it's made a big difference since my symptoms started in 2008 and I was first diagnosed in 2011 and unless you're very attuned to the details of Parkinson's, most folks to this day are shocked when I tell them I have it. Sinemet is my standby and my doc has me on 6 per day taken every 2 1/2 hours during waking hours - which has been the best plan for me after trying many of the more traditional dosing schedules and a wide variety of meds. Am also using the Exelon patch which seems to improve my cognition and is also thought to slow down the progression of the disease. Adding Mannitol to my regimen lately has been encouraging. Although I'm looking at giving Thiamine a try. Thanks everyone for joining in. It is so great to hear so many other voices walking this path. Is this web site based in the UK?

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Here's the link to the Mannitol I use in the US.

amazon.com/gp/product/B01KA...

I take one heaping teaspoon dissolved in my morning drink every day. (Search the Net for a definite of what a teaspoon might be in your language.)

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