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benderet

Exercise makes me feel worse (at first) - normal?

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benderet    6

Hi everyone

 

I've been lurking in the shadows here for a while and I have an exercise question that I can't find much of an answer for.  First the question, then I'll give my background info for context. 

 

Everyone says exercise is a must for PD, yet I find that when I exercise, my symptoms get much worse for several hours, before returning to baseline.  Though I recognize that in the long term it may help, it's hard to motivate myself to get off the couch when I know I will feel like heck after.  This applies to any type of exercise, including just a busy day running errands etc.  I have found that I can limit the impact slightly by being aggressive with my sinemet dosing, but I haven't found a good "formula" yet.  My question is twofold - is this normal for people with PD, and if so, how do you manage the issue?

 

Now my background.  I'm 34, diagnosed 6 months ago, though I was suspicious of PD about a year before that.  Much of that 1 yr delay was because my DAT came back normal and first neuro concluded it was likely just 'in my head'.  Long story short I found another neruo, ironically not an MDS like my first one, and he made the diagnosis and started sinemet (due to problems with ICD's I can't be on the DA's nor Rasagiline, learned the hard way).  Initially I was on 3 X 100/25 immediate daily, but symptom control was not great and it did not last long enough to get me from dose to dose.  I also had some mild 'diphasic' type dyskinesias (so much for 5 years, I was dyskinesia free for 1 month :-).  By 'mild' I mean it didn't keep me from doing anything but people would sometimes stare at me.  Anyway my neuro upped the dose to 6 X 100/25 daily and after some experimenting I settled on the same dose but with a schedule of 4 X 1.5 pills instead of 6 X 1 pill.  Currently my symptoms are well controlled through the day and dyskinesias nearly gone, though the evenings are a bit tough sometimes. 

 

But enough about me, what does exercise do for you (or to you :-)?

-Ed

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swva    81

I have either no tremor or almost no tremor during exercise. Afterwards my tremor usually increases somewhat for a short time and I will get muscle twitches, but then it calms down and I feel better and sleep better. Some of my best days are when I do a lot of physical labor. I never notice my tremor and I sleep like a rock.

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Gardener    194

Hi Ed, 

 

I tire quickly with exercise even when I'm doing activities I enjoy like gardening.  My approach to movement in general is to balance it with rest.  I'm a lot older than you but I can typically do no more than 30 minutes of activity at one time - then rest.  I always time my elliptical machine workout for about 30 minutes after a dose of medication.  I can't say that exercise gives me energy but it does help with the stiffness.   The worst part about this disease for me is that I used to enjoy physical activity, getting outdoors to walk, even mowing grass.  Now I have to push myself to get out of my recliner.  I do it, though, because I'm afraid that one day I won't be able to and I'll regret having wasted the "good" years by giving in to this disease.  Best to you, Gardener

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Pathfinder    65

My husband is unable to exercise, when we have tried he is exhausted and takes a full day to recover. To combat the rigidity and back aches he sees an OMT doc every two to three weeks. It isn't ideal, but trying to explain to him the importance of movement with his dementia is nonproductive. This is the best l can do to answer his needs.

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miracleseeker    675

My aunt never understood how my mom would get more tired after she's walked.  She thinks exercise cures all and the more you do the better you get.  I wish that were true for everyone.  I make my mom walk every morning with me before I go to work unless we have bad weather.  It's not easy to get her moving.  I have to hold on to her arm and drag her at times to pick up her feet so most of her weight is on my shoulder and I am sure I have a torn something or other somewhere but I just keep going because she needs to keep moving.  The rest of the day she's pretty mush asleep and this has been going on for at least 5 years now.  

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Pathfinder    65

My aunt never understood how my mom would get more tired after she's walked.  She thinks exercise cures all and the more you do the better you get.  I wish that were true for everyone.  I make my mom walk every morning with me before I go to work unless we have bad weather.  It's not easy to get her moving.  I have to hold on to her arm and drag her at times to pick up her feet so most of her weight is on my shoulder and I am sure I have a torn something or other somewhere but I just keep going because she needs to keep moving.  The rest of the day she's pretty mush asleep and this has been going on for at least 5 years now.

 

I try to get hubby out for coffee, trip to the store etc. everyday. He is usually so tired from this small exertion it's bed for him the rest of the day. I fret and worry so about his physical condition but what else can l do? I know full well his continuing to decline physically will come back and haunt me later, but I am tired of the fight. It will be what will be.

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Peace    160

I believe reading from a few others that they do feel worse after exercise.  Occasionally my symptoms are worse during exercise.  My leg will tremble and my foot dystonia acts up.

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TexasTom    716

I'm a big believer in Exercise.

 

I'd always time my meds right before we started exercising. Still a catch 22 as tremors would kick in during exercise. Just keep going and ignore the tremors, just make sure you don't drop a 10# weight on your foot.

 

I'd bicycle around the neighborhood, sometimes both arms are tremoring so bad I had a hard time holding handle bars. Worst was coming up to a signal light, stopped and fell over. Not good.  So it is like when I exercise the dopamine gets used up. For thirty minutes after I stopped, it was shake city. Irony is after that I was good to do something like soldering.  

 

These days still working on getting the DBS dialed in. My tremors are not as bad, more like my symptoms are smoothed out without the peaks and valleys.  Still have tremors, but can use the keyboard when shaking (previously - not possible until I had my meds).

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Chava    18

Exercise definitely helps with my stiffness. I usually rest for a bit after coming home and showering but I'm not wiped out for the rest of the day. I do feel like my sinemet gets "used up" more quickly so I notice it starts to wear off sooner during the cycle where I've exercised. So if I usually go 4.5 hours between doses, I need to shorten to 3.5-4 hour in order to not go too far "off". I've learned if I go too long between it takes longer for sinemet to kick in which can really throw a wrench in my day.

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Minna76    8

Hi Ed,

I am using exercise as my main treatment of symptoms right now but agree with you...at times my symptoms are worse, especially during a workout. I do not have a typical resting tremor, just a random "one & done" type tremor but during my workouts I tend to tremor more often or have what feels like an internal tremor. I have to say that my rigidity does tend to feel better. I'm liking step aerobics, Pilates & yoga right now. So though it doesn't seem to be all around helpful my motto right now is..."I'm gonna keep moving so I don't stop" ;)

 

Melissa

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Ollie    15

The point of the exercise isn't to address the current symptoms (and in fact for most of us the exercise is be difficult and can exacerbate current symptoms). The stiffness I felt after a work 3 years ago is no where near how stiff and achy hurt I feel after I work out today. My tremor goes crazy while I work out, and the fatigue hits like a brick shortly after too.

 

BUT, the physical act of exercising actually has the therapeutic benefit of resisting neurodegenerative diseases. When you work out hard, to the point of actually tiring yourself out, there can actually be measurable increases in dopamine in the stiatum. Regularly working out, even moderately, has been prove as one of the more effective ways to enhance the plasticity of the central nervous system. That means it it makes your brain better able to adapt and resist the effects of PD. This isn't sales pitch type stuff from an infomercial on late night TV, its scientifically documented fact. 

 

So, yes it sucks. It can hurt, and I'd agree that it can even cause symptoms to flare up. But, if that means my current symptoms flare and I slow down the progression of new ones, I'm all for it. 

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Waywrd1    45

Yes, you get temporarily worse as your body processes the excess neurotransmitters created by the exercise, but are overall better for it.

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I have been a bicycle rider for years but lately have noticed strong tremors in my back and neck when I stop.  I don't notice it much when I am riding but can really feel it when I stop.   likewise if I stop to take a break at work I feel the same.  but am also starting to notice tremors in my hands and arms in doing small tasks like writing and drawing.  and it seems to be get worse with noise ( music, whistling. background noise) and alcohol.

any other exercise ideas

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MurrayPD2    219

I have noticed my right hand shaking a lot after some exertion. I am mainly left side affected.    I usually eat or rest and it can go away after a break.   I think it is good for the body on general to keep moving, but I have to take breaks for a while before I go do something else.  I think, if you don't move much, the body will stiffen up worse and your stamina begins to go down.  However, I thin we need to pace ourselves and not overdo it.  I have found when I am really tired, I do need to rest.  If it is just apathy, I can feel better after forcing myself to do some light activity.  However, if I push myself, I can ruin the next day because I will have a bad one.   For me, I have to balance and listen to my body carefully.

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LAD    215

I tremor if I do a hard workout.  I do PWR (www.pwr4life.org). Ultimately I have a better day overall. I firmly believe that exercise slows progression. Find what works for you. 

Keep fighring!

LAD

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StrkL    12

After getting properly medicated, I found that when I exercised hard, I would go off earlier than usual (and have to take more sinemet, or take it more frequently), feel tired a large part of the day, and have trouble dressing and showering due to tremor and stiffness.  If I exercised moderately, I wouldn't have these problems. (I found, shortly after getting properly medicated, that I had no trouble dressing or showering even when off - unless I had exercised really hard. Your mileage may vary.)  

I also tended to have problems if I hurried getting dressed, or hurried at work (I was still working then), or rushed in any way.  So I deliberately took things slowly, to avoid these problems.

But if I found that of I occasionally exercised very hard (the rest of the time moderately), I would eventually adapt, and not have problems.  (I would still go off after a while, but would not have trouble dressing or showering or hurrying.)  So eventually I had no more problems exercising very hard than exercising moderately. (Except for muscle soreness and general fatigue - but I would not have more severe Parkinson's symptoms.  In particular I would not have any tremor, even when off.  This contrasted with my symptoms before medication - my tremor was so bad I wasn't sure I would be able to feed myself much longer.)  I did have a tremor when off if I attempted to walk.  But sitting or standing, I did not.

So after a while, I did not have to make any special effort to exercise moderately (to avoid exacerbating PD symptoms).  In fact, as I was before PD, I often overdid it.  So I had to work at exercising hard no more than a couple of times a week, to avoid injury.  But I did not suffer worse PD symptoms.

As I said, your mileage may vary.  But it might be worth seeing if you can adapt to hard exercise.

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adams234    242

Some one explained exercise like this to me and it help me keep up the motivation. (I have almost the same issues you do during and after exercise).

"Doing an exercise routine that gets the heart rate up for 1/2 hour or more is like making a deposit in your 401K. It is not immediately beneficial but will help you in the future."

This helped me to understand that I may not see a benefit that day, but I will see it in the future. I can say that after 2 years of maintaining an active life with exercise, I am still on the same dose we first found worked for me and my last MDS visit I had the same scores I did when I first saw them.

Good luck and hang in there. It does get better.

Attitude is everything with this disease. Every day try and find something to celebrate (be happy abut). It can be as simple as waking up in the morning and putting you slippers on with out meds. This way of celebrating the little thing helps me stay in a positive mind set each day.

Blessings

Adam

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Great topic, excellent responses!

My exercise experience: I started with Tai Chi shortly after diagnosis in July 2015. This was helpful for mindfulness, relaxation, and balance. I think it helped me accept my membership in the PD Community. 

In February 2016, I learned about Rock Steady Boxing at an MJFF Partners in Parkinson’s event. (If you have the chance to attend, I highly recommend you do.) At the time, the nearest facility was over 40 miles away, through mostly urban traffic - not reasonable with my schedule/family life. Fortunately, they were expanding, and classes started July 1st. 

RSB is nothing short of amazing. It does fatigue me; sometimes I find myself yawning during class. I often take a nap when I get home. But overall, it has lessened my fatigue, or maybe increased my ability to fight it. I have regained much of the strength I had lost in my right arm, and to some degree, the dexterity in my right hand. I actually have improved some of the job skills I was beginning to lose, which in turn, has increased my confidence. 

Last week, I went to RSB for the first time in 11 days; I could definitely tell it had been too long. Compound that with issues getting my medication - I had to cut back on Rytary from 2 capsules to 1 capsule, then used a backup supply of Sinemet until I could get Rytary again - and I was the most miserable I had been since being diagnosed. After RSB again 3 days later, the cramps in my right leg & overall stiffness/pain have finally subsided. Any doubts I may have had about the importance/efficacy of exercise AND medication (at least for me) are gone.

I would still go to Tai Chi if my schedule allowed. I kind of miss it. However, RSB is clearly more beneficial and more worthy of my precious time.

 

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