Hi, I've just joined the online community and am very encouraged by the experiences which are similar to mine. Been running for 40 years and have continued since my diagnosis in 2011. Distances and speed have dropped a bit, and over the last year or so, I have noticed a tendency to almost 'fall over forward' when running after dark; So tend to run in daylight whenever possible.
My Parkinsons Nurse has reinforced the importance of regular exercise such as running. It provides a rhythm, encourages the nerve connections, helps maintain general cardio vascular health, and makes you feel good afterwards. So keep on running everyone!
I take my hat off to all you runners. Don't run myself, but swim 3 times a week and play badminton on a Monday, plus walking our dog.
My PD friend has just joined a Parkinson's group, who go Nordic walking (with poles). She loves it and feels so much better than before. Going to give it a try myself.
Exercise is certainly the secret.....and water.......lots of it!
One thing that I have noticed is that I take my meds one to two hours before going for a run as it can take up to an hour for them to kick in. Although they usually kick in after about 30 to 45 minutes. I then typically go for a run of between 5K and 10K which takes 25mins to 55mins. I then find that after getting my breath back after the run I have flipped to an "off" state, when it's sometimes only between one and a half to two hours that I've been "on". I'm not due my next meds until 5 hours after my previous meds which means I've still got another 2 hours until my next meds.
I assume that my meds only produce a finite amount of dopamine which will last until my next meds 5 hours later, if I don't do any vigorous exercise. It seems that if I do vigorous/high intensity exercise eg running, then all the extra dopamine is used up during the exercise, leaving me in an "off" state.
I am waiting for an appointment with my specialist where I hope to discuss it. Maybe I should have my dosage increased before a run, or take my doses more frequently?
On well trodden ground. Idea is to have constant level of levadopa and also for longevity the minimum for you to function normally.
Levadopa comes from taking tablet and hence getting from stomach through the blood to the brain. Stomach preferentially absorbs protein hence not taking pills near feeding time.
Simple ? 3 years after diagnosis I used to base the kick in on 1 hour 37 minutes and last 3 hours with low levels of dopamine. And drop off was slow over about 20 to 25 minutes.
Over time "on" reduces and change from "on" to "off" shortened. Neuro adjusts dosage and frequency to try and control the levadopa levels constant. Methods used are slow release dopamine at night, soluble madopar either as a kick start in the morning or as a "rescue" if you switch of. Soluble madopar kicks in after 30 mins to 1 hour for me but "on" period is limited.
You also find that some movements are unaffected by PD whilst others are hit hard. I for instance am happy on stairs but not walking on the flat. And as for slopes and Ramps - virtually impossible when I am "off". The stairs movement of my legs also means that I can press the car pedals with ease even if I cannot get into and out of the car very easily. Walking backwards is also an option when "frozen" with my legs happy to move back even though moving my legs forward can be limited.
Depending on neuro you may have other pills to help the brain use the levadopa.
(1) stimulate production of levadopa
(2) increase sensitivity of levadopa receivers to work with lower levels
(3) inhibit production of chemicals that destroy levadopa
But run while you can You will not regret the time. Particularly as the PD fights back and you have to develop new tricks to keep it under control
Hi I am new here. Just diagnosed last month with PD.. Symptoms quite milld so far. I am a lifelong runner and have continued to run even with added stiffness. My biggest problem is with a foot dystopia that makes my foot curl when running. Any suggestions about how to alleviate this problem. Perhaps wearing trail running shoes rather than regular ones. Thanks in advance. Larry
I run around 3 - 4 km a day on a treadmill. It's the only symptom free time and usually for as long as the burn lasts after it, I don't feel dizzy or nauseous either. It's heavenly. Invariably, the swimming head feeling and nausea returns and I want/need to go to bed.
I had a similar problem with my toes curling up when I walked or ran. I was prescribed trihexyphenidyl by my neurologist and it was magic. Within about 30 mins of taking he first tablet my feet were uncurled. I carried on taking "trixy" for 6 months and when I stopped taking it I found the curling toes did not reoccur (well not in the last 8 years !).
With PD no to people are exactly the same, so no guarantees. But suggest raising the curled toes with the neurologist and mentioning trixy if the neuro does not.
I saw my neuro last week and was prescribed dispersible madopar to provide a boost when needed. It seems to do the trick. Currently my off periods are minimal due to judicious use of the booster dose. Fingers crossed it stays that way for a good length of time. Ran in a 10K race yesterday, just short of a PB and still in an on state after the race. So far so good.
Hello passeggiata , ive been recently dx , may 2015, was pretty active untill dx , its put the wind out my sails since, weakness on r/h/s, do you or anyone on this forum know in general whats the best way to get back into some training , weights ,cardio etc,for a pwp to get the balance in strenght back .. any ideals?. im 48. would apprieciate any advice..thanks
Smudger.s, I'm 39 newly dx. I think you have to consider the emotional impact of the diagnosis too and allow yourself the time to come to terms with it. It's very possible that you are still more than capable of exercising to the same extent that you were doing before May 2015, but your mind is telling you otherwise.
My approach is, start with simple weights, get on the treadmill for five minutes, the next day ten minutes, the next week 15/20, just build up your stamina again. I go the gym everyday. and it really gives me respite. I don't exhaust myself but I always feel the burn from it.
Try to establish a routine around your work schedule, that will make it easier to use the gym on a daily basis. You'll find that it helps your balance, your tremors, your general well being and strength. Even when you feel awful, it's then that you should really go as you'll feel so much better during and after it.
Thanks Hughesnewbie , your right, it is the emotional part thats the problems , i seem to feel beat before i get started and my get up and go is gone somedays .. it very hard because before being dx i was very active , i still keep busy ,and im not a couch potato , so to speak but cant seem to get my head around it .. thanks for the advice .smudger.s
