DBefore PD I was able to run up to marathon (26 miles)
I can now run very slowly until about 3. Miles max. At this point I lose control. I am not able to stop without holding on to something. Pd takes over and I find myself running faster than I can control
Has anybody experienced similar symptoms. And any advice
I am finding my running much slower, and I am now doing a 2 min run/1 min walk. That helps. My time for 5k has dropped from 30min to about 37 over a couple of years. I am 57 and still doing triathlons, just slower. I have resigned myself to the slow down, but not suffering the problems you are
Yo have same rate of slowing up as me. 5k last Saturday was 36.20. That was a mix of jog and walk. Pleasing that it was all controlled. Hope to improve by starting very slow but determined to improve
I have not had similiar symptoms regarding the not stopping. My running feels like Im rrunning through treacle. Neverthe lesss I keep going , and keep going to Parkruns.
**Running And Motivation
Hi there been off the forum for 2 years +
After initial diagnosis 3 years ago when I read everything ,took up PD Worrier and kept running for a time .
Then Covid Happened and I somehow stopped running and taking any real interest in my fitness .
I still work and have a physical Job which keeps my body mobile . By the end of the day I am really not interested in a post work run ! ( Don’T really know if this is PD apathy or just some 67 year old bloke acting like an old man .
My running background started late (in my early fifties ) and I have never been a road runner *so my knees still work * I run off road and preferably off trail . Somehow I got hooked on Ultra Marathons , preferably on mountains and involving navigation Just before my PD Diagnosis you would find me racing most years along the pennine way (aprox 400Km ) every january. Sleep deprivation , 18 hrs darkness ,gales ,blizzards and navigating through bogs at 2 am were all part of the fun .
PD Diagnosis was a real game changer . I stopped all ultramarathon running and cut out almost all my training . My motivation evaporated through fear of the unknown and I began to be Hyper Aware of my dysfunctional gate . My lack of left arm swing made running (especially up hill ) hard work ! . The only thing that kept me motivated was Racing .and my performance was tailing off fast .
I can vividly remember the first time I experienced Hand tremor . It happened during a fell race when I guess my Adrenalin /Cortisol levels had a fight with My Dopamine levels . I finished that race but was close to tears from experiencing my first lurch/glance , into my PD Future .
Sorry about the ramble but it should give you an idea of where I am coming from .
During My Official Diagnosis Consultation with my PD Specialist one instruction from him was DO NOT STOP RUNNING !
It works like this : Running especially off road not only keeps you fit but also reinforces the neural pathways involved in balance . What’s special about off road you may well ask . The answer is that to run off road and especially off trail on rough ground , your brain will work hard keeping you upright and moving forward ( this is complex and intensive brain exercise that will preserve your balance and delay to some extent the onset of other PD Motor issues )
For me I am getting back into running . I consider my self lucky to still be able to run down rough mountain sides ( all but much slower than I used to ) . The fact that I can still do this is probably due to my past off road running .
Now I am nearly retired I work shorter days and have the energy to go running after work .
Park Run is a great way to maintain Motivation . You run/walk at your own pace and can monitor your fitness by your finish time each week .
Having lost my running fitness I am in that painful phase where running hurts . However Past experience leads me to believe that with a little more effort I will be able to run up every hill on my local Park run and bring the joy back into my running and reduce my finish times . After that then I hope to enter a few local (Dartmoor ) fell races .
So my advice is to maintain or preferably raise your level of fitness when you are Diagnosed . Running may delay the onset of your symptoms . Running on rough ground takes practice even without PD so start on level surfaces . If you find you can run-on trails it will do you more good than running on roads .
Finally It would be great to start a running club for runners with Parkinson’s . The name of the club : "Moving and Shaking Running Club " If we have T shirts the printed on the back should be written : “Caution Random Hand Signals !”
Take care all and keep moving
also back here after 3 years since i posted above about running
Haven’t done any for months, but your post has motivated me to do some. I cycle daily and swim once a week, but really don’t feel i have any triathlon left in me. I did manage an Ironman 5 years ago (6 mths after diagnosis) and a half IM in 2019 but I think that’s it at that level
Hi everyone , i saw running mentioned and came for a look. i am one of the "luckier"ones i guess. In just over 5 weeks time i’m running the London Marathon for Parkinsons UK - it’ll be my 13th Marathon , my last one being in 2016 in. Edinburgh .
i still work , i play walking football regularly and more or less do what i want - i’ve also got to 160 Parkruns somehow - i runa Parkrun for Parkinsons group which helps me to raise awareness anongst runners of Young onset Parkinsons on particular as thats how it got me = 39yrs old , now 57yrs old so not doing too badly i feel .
If anyome on herer is doing London please get in touch - i really like the idea of a Parkies Running club with our own t-shirts - need any help setting it up ? i have experience !!
Thanks Zapotec, the more I read since I was diagnosed just a week ago makes me realise what a range von conditions this Parkinsons includes, and feel relatively lucky. As a long time runner first thing to say is that marathons I never touched as a serious risk to human health, but half marathons another story. Looking back I understand the sudden onset fatigue 2009 was my first symptom rather that the CFS and FND diagnosed until they got it right. What I found was that until the left arm started hanging down it was mind over matter and the previous joy felt sadly wasn’t there really. As a life coping mechanism any runner knows how hard that is. I now as I say rejoice in the knowledge of anything I can do now imagining myself down the line just thinking thank god i did whatever I could when I could. The feature you describe I don’t recognise and sounds really scary, not being balker to find the off button, and polar opposite to the tiredness and zoning our I experience. Wishing you a solution that helps you do what you can safely.
Is there a parky runners group in London at all btw anyone know, agree how much easier it is running with others and plan to join local group. NB I do find far more value now in combining with other things exercise wise, definitely walking, ballet or whatever you find, all there own challenges, Mark