My dad has PD (he’s 82 now) - he has been diagnosed for about five years but had symptoms going back about two decades. It is having a pretty devastating impact on his quality of life. I try to encourage him to exercise - he was always a very fit, sporty man - but his balance is so poor now that I am terrified of him falling, and many days he is simply sapped of all energy. I’m very conscious that so many of you say that exercise is key to feeling better - has anybody found ways to work around the issues with balance and fatigue.
(He does go to special exercise classes twice a week, but I want him to be able to exercise safely every day).
I’d be grateful for any tips.
Sarah
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An indoor rowing machine seems like a decent choice.
He's sat a foot off the ground. Fabulous aerobic exercise. Will help retain muscle mass/ strength in the lower and upper body.
No expert on the fatigue issue. I'm guessing it's a case of finding that exercise sweet spot - duration and intensity - that will tend to energise him rather than exacerbate the fatigue.
Thanks - he is still on a low dose of Sinemet (Co-Careldopa) supplemented with a booster of Madopar (Co-Beneldopa) ‘as required’. But because his autonomic system is badly affected, his blood pressure has a tendency to drop very low, which means his consultant is reluctant to increase his dosage. It is frustrating, because I am sure a higher dose of Sinemet could make a huge difference - but it’s seemingly not an option.
Blood pressure low, and autonomic system not working properly - sounds like you are referring to orthostatic hypotension - loss of blood pressure upon standing. Is that the case? If so I can share some important information for treating it.
If that is going on that would be a cause of both fatigue and balance issues.
I am dealing with low blood pressure as well as orthostatic blood pressure. I have stopped the Amlodipin but still take Neubifavol . I was taking 2 1/2 tab of Sinemet daily and have cut out 11/2,.l tab a day. My bp is still dropping 20 points during the day which leaves me really weak. My neuro doesn’t want to adjust the Parkinson’s meds until the bp is leveled out. Any suggestions to help stabilize Bp would be appreciated.
If you are suffering from loss of blood pressure upon standing I do have recommendations. If your blood pressure is simply declining over the course of the day, that is a different matter I do not have experience with.
I have both. I get very lightheaded and weak at times when I stand up . I know to drink lots of water . But I am also dealing with drops in blood pressure. I used to have high blood pressure but suddenly started experiencing low blood pressure. I’ll go from 145/85 to 112/72 which leaves me very weak. My Dr has decreased my blood pressure medicine but I’m still having low blood pressure. My neurologist told me the Sinemet can cause that as well so have decreased that a little .
145/85 is a bit high and 112/72 ought to be adequate. The fact that it is not points to potential vascular issues. Calcification can interfere with circulation and aggravate or even cause high blood pressure by interfering with the action of the baroreceptors. These are stretch receptors in the carotid arteries that are the body's means of sensing blood pressure. There's evidence calcification can be mitigated by supplementing vitamin K. See here for details: pdf.sciencedirectassets.com...
There's some question whether K2 or K1 is the effective version.. I take a supplement with both: amazon.com/gp/product/B01K3...
Orthostatic hypotension is a problem, but I think that post-prandial hypotension is an even bigger one. He takes midodrine (and something else, I think), and has had all the advice about water, salt etc - but even so, his (frequent) episodes of crippling fatigue often coincide with low BP.
The way to quickly raise blood pressure is to drink one quart of isotonic saline - Water with a close enough ionic content to blood that the kidneys do not need to excrete it to maintain electrolyte balance. This can be prepared by adding 8 G of table salt to one quart of water.
You need to be careful when doing this to not cause excessively high blood pressure. This is particularly a problem in the evening for patients with orthostatic hypertension, because their blood pressure tends to peak in the evening. So before experimenting with this you should measure his blood pressure lying down in the evening and make sure it is not excessive.
Thank you. Dad’s blood pressure is generally low - it just seems to drop further at times these days, and makes him feel dreadful. It’s a family thing, I think, as my brother and I also have lower than average BP - but it doesn’t cause us any issues. With his Parkinson’s, dad’s drops catastrophically after meals and on standing / going up stairs etc.
I have never had high blood pressure but now struggle with low blood pressure since PD and all the meds. My cardiologist has me on Fludrocortisone daily and suggested Gatorade with morning meds and salted snacks. This has pretty much solved the problem. Occasionally if I feel woozy and weak I will check my Bp and if low have some Gatorade and chips.
I was going through some old posts on CP and ran across a suggestion that sounds kinda crazy, but would be very easy to try;
"For orthostatic hypotension, I take a combination of Midodrine and Florinef/Potassium. A tip you may find helpful - consistently, when my bp is low and its not time for the meds, I take a bolus of very cold water (250ml or more) and it brings my BP up 20 points for about 60-90mins."
I’m in the same boat as your dad. I’ve had PD for three years and my energy and interest level have fallen off significantly. It’s Depressing to not have the desire or energy to exercise which is everybodys recommendation. It’s a. Frustrating dilemma.
Exercise does help if you can GUT it out through the stiffness and Low interest and low energy! Very challenging; but worth it.
If he can find a close buddy to share the grind that helps I’ve recently increased my depression med as a sort of guess at getting more motivation Sleep is critical and hard to get but being physically tired however you achieve that helps with sleep efforts! No more meds, I’m on enough! Hope this helps Pop
I have wondered if Dad would benefit from an antidepressant, as he sometimes seems so ver low (understandably). But I worry that they can make you feel worse before you feel better, and that would be disastrous….
Sarah before you and your Dad consider an antidepressant,, which comes with several negative side effects, try the daily 40-50 minute moderate intensity recumbent bike (I a already recommended that and you replied below but I didn't address antidepressant). Trust me, I too had balance issues and stiffness which interfered with all types of exercise. The recumbent bike at a neighborhood recreation center was a game changer for me with all the positive outcomes I previously noted : elevated mood, better drug absorption which enhances energy over several hours after exercise, smooth muscle & joint movement,, no balance issues ... Best of luck
Sarah, I relate to your Dad as I too was devoted to exercise on a daily basis! Not keeping up with some form of safe physical activity was not an option so since I had balance issues, I chose recumbent biking 40-50 minutes at moderate to high intensity 6 days a week and the 7th day I do fast walking (if he can't walk safely, he could do chair yoga exercises). Rowing machines are acceptable as well but he needs to work his way back to being fit again so his experience is a pleasant one ! Note that daily exercise 's bonus is that if you do it right after taking your L-Dopa, it helps absorb it more efficiently. If he follows this routine daily, his mood will be more positive , feel much better overall and the extra dopamine hit will smooth out his joints, I'm following this plan and my neurologist MDS specialist has decreased my L-Dopa as a result of my success, Best of luck to you all
I remember of an indoor bicycle that was motorised. It allowed training at 80 RPM without excessive effort, nevertheless training properly for PD. The speed sems important for the results
I believe the indoor, motorized bike is the Theracycle. My autonomic nervous system is out of whack as well, along with bp that drops from 120s over 70s, down to 85/48 levels. Very debilitating.
However, in my search to stay active and competitive in sports, my neuro prescribed & cardiologist seconded a tiny dose 0.05 mg of Fludrocortisone. It was supposed to take a month to work, but in the two weeks of use, I have rarely been lightheaded. Hoping it continues.
Hi John…my 84 yr old Mom w PD 11 yrs has a horrible left knee. Its landed her in a wheel chair along with her lumbar issues S1-L5. She loves to walk on her treadmill but sadly can longer due to the instability of her knee. Replacing not an option with her Park Disease and so far the cortisone injections in that joint do not help. What type of harness?? I will look into that! Mom takes only natural meds no prescribed. Dad was a chem engineer and they lived a completely holistic lifestyle practicing func med only until his untimely death in March related to an accident. So, I’m her caregiver now and trying to keep her moving! Quite a challenge. She is great with her seated exercises but cardio is lacking. Neuro apt tomorrow to check her lungs and heart. Some Afib has presented. Mom has also been on the B1 protocol for a year now. Sublingual 25mg (sup source) MWF w a 1x/week B complex and 1500 Mag Glycinate daily. Still looking for a natural Dopa or Macuna for her that works. I know that you are very knowledgeable on this matter and any input is greatly appreciated!!
My father had Parkinsons. We used to try to get himto exercise , but he said the more he exercised the more fatigued his muscles became and prior to the Parkinsons he had exercised vigorously all his life. Now, at 81 I have Parkinsons and Like my father, I find it difficult to exercise due to extreme leg fatigue that not only occurs from any leg exercise, even normal walking but also upper body exercise, while my upper body muscles react normally. This fatigue is extreme and lingers for days. Sitting at my desk also worsens the leg fatigue. I want to emphasize that I do not experience a general sense of fatigue at the same time. In fact, I can be feeling quite energetic overall. Have you or any other person out there had this experience?
Dad often comments that his legs simply ‘don’t work’ or feel like lead weights. I think he is talking about a similar type of lower body fatigue to you. I’ll show him your post and see what he says.
Sarah, I got extreme fatigue when I cut back on my levadopa. I can give up on life when my dopamine is low and then wonder whyI was so negative half an hour later when the meds click in. I think an increase in madopar or sinemet would make a big difference.
Is he still taking blood pressure meds? I think they need to be stopped.
There are loads of chair exercises on u tube some specifically for PD.
I think he definitely needs more Levo-dopa - but his consultant is really reluctant to prescribe it due to his very low blood pressure. It’s very frustrating. I don’t think he could stop the fludrocortisine or midodrine - without them his blood pressure would be very dangerously low.
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