Exercise and levadopa

[ruff1]

Does anyone take extra medication before or after they exercise? Does exercise ‘ use up ‘ dopamine more quickly ? My husband uses the gym , plays golf and runs but lately he is experiencing extreme sudden ‘ off periods ‘ I wondered if it was the exercise using up the dopamine? ☹️

[MBAnderson]

I think exercise produces dopamine.

[ruff1 in reply to MBAnderson]

I thought that but I’ve been reading that it uses it up as well .

[Enidah]

I take more when I'm hiking or biking because I'm asking my body to do more and I don't want to go into an off period.

[ruff1 in reply to Enidah]

Can I ask how much extra you take please. John has some small dispersible Madopar that he can take if he feels he’s going off .

[Enidah in reply to ruff1]

I am pretty unscientific about all this but I probably end up taking one and a half C/L 25-100 every 2 or 3 hours instead of just one. Having said that, if I feel I need more I go ahead and take a whole one. I really go by how I feel. Some days are better than others.

[ruff1 in reply to Enidah]

Thankyou 😀

[42bcar in reply to ruff1]

How many do you take a day?

[Kwinholt]

Hi there . I am an ultra runner with PD and yes on my long runs and aggressive weight lifting I take more cd/ld . If it’s extra hot out it burns off even quicker and also if you out exercising in the cold weather too. My dr has always been supportive and is the first one to say it’s ok to take extra if needed at my long races ect. I am a 55 year old female at 98lbs and my normal dose for a general day is 6 25/100 cd:ld , azilect with my morning dose and Comtan with my afternoon dose. I receive Botox injections in my left foot and leg every 3-4 months for the dystonia. I am thankful everyday I can still go out and run . Keep exercising !!

[ruff1 in reply to Kwinholt]

Thank you so much for your detailed reply. John was a marathon runner - best time 2 hrs 56 mins and like you had to give up running due to foot cramping, fatigue etc. Been diagnosed nearly 12 years now and back running but not marathons. He has an appointment with the Parkinson’s nurse next week so will talk about extra medication. He takes Stelevo 6 x a day every three hours, Asilect first thing in the morning along with 20mg of spiroco xl first thing. He has dispersable madapor when he needs it up to three times a day . His off time are very extreme especially in the evening and during the night .

[Kwinholt in reply to ruff1]

Your husband is amazing . My fastest marathon was a 3:48 . I am not that fast anymore , I’m just happy to finish and have finally gave up the 50 milers. To hard on my body . My evenings are usually the worst too but I do sleep well when I go to bed. I was wondering if your husband can take maybe even 1/2 a pill of his stelevo at night before bed so maybe his body won’t cramp? When I’m out running I take 1/2 or a whole pill extra as needed so my left side doesn’t cramp and freeze up. It’s taken some trials and errors out there to figure out my body and meds out there running. My PD was diagnosed 5 years ago . I did not start with a tremor , I could not walk , my left side would freeze. Dr thought first I had MS and after MRIs and lots of other tests....and DATscan realized it was PD. Started the cd/ld and within 2 weeks was running again . It will never be at where it used to be but I am getting older too but I am thankful to still run everyday. I hope I have helped .

[MBAnderson in reply to Kwinholt]

Kwinholt,

How many miles do you run per week or per month? I've always imagined long-distance runners (which I used to be) would have minimal symptoms? (About a year after I quit running, my symptoms showed up.) When were you diagnosed?

[Kwinholt in reply to MBAnderson]

Hi there, I run about 20-50 a week depending on if I’m doing a race or not. I love trail running but that is a bit more difficult these days. My symptoms started not being able to walk so when my meds start to where off my body starts to cramp so I take more meds out there. I have to say the one thing it does help is my peace of mind , I know there are a lot of PD friends out there that take anxiety or anti depressant meds, which I understand but for now I have not needed . I think my exercising has helped that. 😊

[MBAnderson in reply to Kwinholt]

Impressive. I ran 10, 7 minute miles, 6 days a week for 30 years and I've come to believe it is not coincidence that my symptoms showed up a year after I quit. (I only quit because I stepped on a broken bottle and did enough damage to my foot that I was on crutches for 6 months. Boo-hoo.) I believe the running staved off the progression. If only I could get back to it. I'm still surprised and find it curious that your symptoms are at the level they are with the amount of miles you're doing. I hope you can keep it up. It has to be helping.

[ruff1 in reply to MBAnderson]

After quite a few years out of running due to foot cramping - the first sign of PD , my husband started again about 18 months ago , his medication stopped the foot cramps , then he went to a physio led gym where they helped him build his strength especially upper body he then tried running again and found he could run 😀 slowly at first he then completed a half marathon last October in exactly 2 hours and has recently completed a 10k in under 50 mins . We are convinced that without the gym and Pilates sessions he would not be back running . He’s been diagnosed nearly 12 years 😀

[Kwinholt in reply to ruff1]

That is so wonderful. I too go to the gym to lift weights and work on my balance . I think it all plays a part in our health with PD. I’m trying to focus on stretching and doing some yoga classes as well but I get impatient 😊 are you anywhere near California?

[ruff1 in reply to Kwinholt]

We live in the UK in Leicestershire. I think that a strong core is essential for all people as they age not only people with a chronic condition. I go to all the gym classes as well one of the best is a 30 min class of exercises for the core , really hard work but well worth it !

[Kwinholt in reply to ruff1]

You are amazing as well. For my birthday my son has signed he and myself up for a Tough Mudder race in October. 10 miles with 20 obstacles . I’ve been working on my pull ups and upper body strength. It will be a challenge but will be fun. That’s my next venture.

[Kwinholt in reply to MBAnderson]

That’s amazing . I know everyone’s journey is different and my dr keeps reminding me of that because I do think In the back of my mind about how much cd/ld that I require to move. But if I didn’t have it I’m sure I couldn’t keep running. I chose not to add anything more pharmaceutical wise to my regimen at this time , I do take a lot of vitamins too and have no dairy and no red meat , I have just started taking the B1 as well. I have a spray with a 4:1 ratio of cbd/THC for pain when needed because I choose not to start pain pills and look to alternatives if needed. Massage, acupuncture as well. Maybe my symptoms would be worse if I wasn’t running anymore . I know before I was diagnosed I was doing a 50k race and I fell 5 times , I was so frustrated because there was nothing that I had tripped on , I believe that was a PD warning. Looking back, there are things that I’m sure were related. I hope you can get back to running even a little .

[MBAnderson in reply to Kwinholt]

You may be interested in these videos regarding red meat. I spent much of my life following the government guidelines on red meat, but have now come to believe they were upside down.

Mike Mutzel interview Sarah Hallberg, MD; June 13, 2018, 1 hour.

youtube.com/watch?v=WMtBvQK...(Not working as expected?)

Mike Mutzel interview Nina Teicholz; high-fat low-carb diet

youtube.com/watch?v=EX41Jlr...(Not working as expected?)

Mike Mutzel interview William Curtis; keto diet

youtube.com/watch?v=5sYClVQ...(Not working as expected?)

Dr. Mark Hyman interview Nina Teicholz; high-fat, low-carb diet

youtube.com/watch?v=Zc_e5ME...(Not working as expected?)

[Kwinholt in reply to MBAnderson]

Thank you for the information. The reason I choose no dairy or limited dairy is because I was producing calcium based kidney stones and the red meat is because of it causing inflammation in my body . Mind you my husband has been a meat cutter for 39 years so there is red meat in my house lol it has been my choice for me. Nothing to do with low fat or anything . I firmly believe in the protein. 😊

[Ajssister in reply to MBAnderson]

Really enjoyed this interview. I’ve been thinking about this for a while now n will be giving it a try. Thx. Not surprised at the skewed testing done. Corruption....even in “the good old days!”

[Kwinholt in reply to MBAnderson]

I’ve had PD for 5 years.

[Kia17 in reply to Kwinholt]

Hi Kwinholt

Please can you tell me more about the Botox injection and how it affects your dystonia.

Many thanks

[Kwinholt in reply to Kia17]

Hi there. With any Botox it is used to ‘paralyze’ certain muscles. Mine is to paralyze the ones in my foot and leg that cause my freezing dystonia where my toes curl either up or curl under and my foot and leg curls in so much that I can’t run or walk. Making sure I always keep myself in my “on” times obviously helps too this is an extra help and it’s not where I am so paralyzed I can’t feel my foot. Doesn’t work for everyone . My dr said he does injections in some patients eyelids , necks ect . And it doesn’t last forever like all Botox . About 3-4 months , so it’s a continuous regimen if it works and if insurance pays for it . Karen

[Kia17 in reply to Kwinholt]

Thanks very much Karen

Who do the injection for you ? A neurologist or a general surgeon?,,, Do you need a referral from your neurologist to get the Botox injection?

Thanks again

Kia

[Kwinholt in reply to Kia17]

My PD neurologist does the injections . Don’t go to a GP. Your PD specialist should do it . And they usually submit for approval to your insurance first because it’s atound (for mine) $3000.00. When I was on my husbands insurance they approved no big deal , but sense have had to go on my own insurance and at first they denied my Botox and I appealed and went to the top and got approval . I don’t take “No” for an answer. 😊 Karen

[Kia17 in reply to Kwinholt]

Many thanks Karen.

Kia

[Kwinholt in reply to Kia17]

Your welcome . Are you in the states ? I’m in California .

[Kia17 in reply to Kwinholt]

No Karen, I am in London (UK).

[Kwinholt in reply to Kia17]

Ok Kia, I would assume Botox would be as assedible to you as well . Karen

[Kwinholt in reply to Kwinholt]

Easy accessible lol

[Kia17 in reply to Kwinholt]

I think so. I have to check with my neurologist. I only have dystonia when walk really fast or cycle with RPM higher than 120. Thiamine and Low carb diet have helped my dystonia alot but I am looking for a complete remedy.

Kia

[MBAnderson]

You both have inspired me. I have been doubtful that I could get back into it, but from your example, it seems clear, I'm just not working hard enough at it in the gym. I spend 45 minutes in the gym 3 or 4 times a week, but don't work on my core muscles. I should get into some kind of program which adds discipline. I'm going to start running again even if it's only 50 yards and then trying to add 10 or 20 feet each time. Thanks for the story.

[Astra7]

I believe dopamine tops up overnight and then gets used up during the day. I often take an extra quarter of madapor when I'm playing tennis particularly in a competition as I think it gives me a boost, possibly psychological! I'll ask my neuro about this when I see him later this month.