I’m a 54 ultra runner with PD. Diagnosed 5 years ago , had symptoms stating before that. Ended up not being able run or walk. Was given carbadopa/levodopa and in two weeks was back running my marathons ect. Of course things are progressing and I have dystonia on my left side and some cervical dystonia too. I receive Botox on my left leg and foot every 3 months which helps too. I work full time and have a coworker who is also a massage therapist . She knows my history and really wants to help me . I had a 90 minutes massage and it made me ill and feel worse. I relaxed and loosened up for a bit but was like my dystonia came back with a venegence . Has anyone else experience that? And I too wake up I’m pain and am in pain all day but learn to just suck it up and deal with it.
PD and getting sick from a massage - Parkinson's Movement
Massage is good for me but everybody's different. There are lots of good ideas posted in this forum - take a look around - I just started the high-dose vitamin B1 protocol and have already gained some benefit.
Also, Qigong has been helpful for me, my story here: healthunlocked.com/parkinso...
park bear-what are your benefits of B1 so far? Thanks
Yes, I had one of those messages and it did the same thing to me. The most relaxing message I can get is the pulsating shower on hot and full blast just relaxing those muscles. On those days when I am feeling a little extra tight in the back a half an hour back massage helps but only as long as I am in the shower.
90 minutes is too long for many people, especially if it was your first massage. Your massage therapist should know this.
So you didnt take meds until 5 years after diagnosis and by that time you couldnt walk? Now you are in pain all day?? Sounds like you are undermedicated.
No no my first symptoms was I wasn’t able to control my left side and couldn’t walk let alone run. I was put on carbadopa/levodopa and in two weeks was running again, I’ve been on meds for the whole 5years along with Azilect and Comtan too.
Sometimes when I get massaged it hurts worse at first but long term it helps .
She may have released a lot.
Drink a lot of water and maybe try it a couple more times,
Hi . Thanks for your P.M. I had hoped for someone in the UK to run with. I doubt I will ever get to the USA to run with but I'm sure everyone in the UK wishes you all the best . And keep smiling. Mike
Hi there, 46yr old, Dx 2014, Just wondered whether you've got any tips for running. I'm just starting off with it and currently only up to 5K but wanting to go further (aiming for 15k in October). Main problem is dystonia in my left foot which kicks in when medication is low. Ideally don't want to increase my tablets but sounds like you've had a similar issue and I guess the botox is helping you. Anything else you've found helpful?
Hi , yay for you to be out there running. Absolutely that’s what is happening , you need to take more meds when you are out there exercising . I’ve found that I will break my Cd/ld in half and take an extra half while I’m out there. I’ve gotten pretty good and knowing or being able to tell when it’s starting to twist or lock up and stay a head of it. Remember when your exercising and especially if it’s warm out you burn your meds off faster , so you might try and take an extra 1/2 while you are out there. The Botox I get every 3-4 months , I think helps as well but it doesn’t work for everyone. I just ran a 50k on Saturday . Keep running . Karen
Thanks for that Karen. It's really encouraging to hear that you're still able to run amazing distances with a bit of extra medication help. I think the distances I'm currently running are so small that it wouldn't really work supplementing "in-run", but I do try to gauge where on the dopamine level curve I am before going out.
Would you mind me asking what kind of doses of c/d you're on? I can imagine you would say that running has helped with the PD progression, which I'm already finding even with my small distances. I think the psychological benefit is difficult to quantify, but definitely worth the effort.
Thanks again. Nick
Hi, I currently take 6 cd/ld 25/100 , 2 in the morning with 1 Azilect during the day I break my cd/ld in have and combine them with my Comtan and then I take 2 more cd/ld before bed. The reason I break them in half during the day is bc the full dose makes me very tired and I work fulltime and I discussed with my dr about breaking in half and taking the half every 2-3 hours. I hope that helps. Karen
Sounds like you're doing really well, as well as working full-time. I'm on 6 half-sinemet CR each day with an occasional madopar 50 as a boost. Still working full-time myself, although sometimes struggling to work out when to fit in the exercise!