My wife has PD and together, we're working to alleviate some of the symptoms associated with it. Many articles I've read (as her primary caregiver) discuss the value of exercise. But it's becoming more difficult for me to encourage her doing any level of it. That is; even what might be judged as 'easy' to do. She complains of weakness in the last week to ten days, as her excuse.
Any help from the readers would be appreciated.
Patrick
It is not an excuse – it is a reality. Parkinson's can cause a debilitating fatigue. If I need a stimulant prior to exercise, I use dark chocolate. Worth a try, but this may not be sufficient for her. Please believe your wife and work with her to find a solution. Parkinson's can also interfere with exercise by making it difficult to stand, walk and balance.
light wearable weights - wrist - belts etc may help
Paddy915,
The following might be worth reviewing to see if any might be within your wife's capabilities:
healthunlocked.com/cure-par...
If she isn't already using vitamin B1, it might definitely be worth considering because forum members who have used it have reported the following improvements in total :
healthunlocked.com/cure-par...
Keep in mind that this is the sum total of reported benefits and no one person got all of these benefits and some people got no benefit, but if she gets the desired benefits then it will be well worth the effort. It is very important to have hope and for the majority of B1 users, it has helped them.
If you have questions about B1, just post them. Well wishes to your wife and yourself and please keep us posted on her progress!
Art
She may need more meds when it's time to exercise. I know mine wear off quicker when I am exerting myself.If she didn't exercise before PD it's a pretty tough time to start but having enough meds in in the system can make all the difference.
I know I've repeated this several times but for the newbies repeated again. You need her to try and get her to go to rock Steady boxing. rocksteadyboxing.org It's a non-contact boxing program just for Parkinson's patients. They take people at all levels, even if you are in a wheelchair and they know how to motivate everyone. I've been going there for 17 years I've had Parkinson's for 20 years and it does really work for me in a ton of others. There are now over 800 affiliates all over the world so that kind of shows you how good it works. You could check it out first if you want if there's one near you it will show you on the website. S ee what you think or just look at some videos on the website, everybody's smiling and everyone knows how you feel you don't have to pretend, you can just be yourself. You can private message me any other questions. 🥊
We have two importantly different areas of the brain, the conscious and the subconscious.
Exercise is controlled by the CONSCIOUS area of the brain and therefore all exercise is done consciously. Maybe she is not aware of the power of the CONSCIOUS BRAIN!
I've noticed the longer I don't exercise the more I feel the PD symptoms including a sense of muscular fatigue that makes it just hard to consider exercising.
That was recently and I was totally shocked to find that when I went out for a walk, I was perfectly able to. I wasn't experiencing the deconditioning of when I have an exercised in a long time. So maybe ask her to try and see if it's as hard as she thinks it's going to be.
There's a Hadassah exercise zoom. It's pretty slow and low-key and you can do it from a chair. And social. I can provide the info or maybe there's something in your neck of the woods that's more encouraging for her. Ask a girlfriend to ask her for help motivating the girlfriend to exercise? The rock steady boxing?
Another thing to bear in mind is apathy.
Im 7 years in and beginning to struggle with apathy and depression.
This is possibly apathy due to a lack of dopamine and the starting of depression or anxiety. I have found the best way to get hubby back moving is to encourage him to do something he really enjoys even if it isn’t exercise.
The main thing is to stop her falling into sitting doing nothing. If you can get her doing something she likes then you can slowly add in things that she doesn’t mind much and eventually build up to something that involves some effort and exertion.
How oldish is she roughly? Is she normally a social person? If she has some friends, she socialises with or maybe a daughter or son you could ask them to help with asking her to do something with them. Even if it’s just eg shopping or meeting for lunch etc.
Any enjoyable activity helps increase dopamine. If they are in on it they could include a little walk with the outing without calling it exercise.
And is it summer or winter where you are? Winter can cause a wind down. If it’s winter keep the getting up time as early as possible to get as much daylight sunlight as possible. My husband is part bear I reckon as he seems to want to start hibernating as the days shorten!
If you think it is fatigue instead, has she had blood tests to rule out deficiencies ? Eg anaemia. You could try a good multinutrient supplement with the natural forms of vitamins and rhodiola rosea might help with energy but check interactions with any medications.
Thanks for the tips! My wife is 75 and we live in Chicago (winters... UGH!).
Ah, winter won’t help. The other thing is impending Christmas. That makes my husband exhausted and unwell even though he doesn’t have to do a thing about it.
She may find the hype and just the past memories of having to arrange a stressful lunch, presents etc is lurking in her memories making her anxious and exhausted. Does she have any Christmas related tasks she needs to do? If so you might be able to reallocate them to someone else. If you are planning a big family day it might be making her tired.
For my husband even irrational things that he say he isn’t worried about can send him into avoidance mode where he feels “fluey” and needs to hide in the bedroom and sleep a lot.
One more thing, has she had covid. Have you looked at the possibility of long covid?
I sure can relate to how your wife is feeling! Adding to my Parkinson’s fatigue and stiffness, I have been diagnosed with anaemia for a number of years now! I take iron tablets for the anaemia. Still, fatigue, and not wanting to exercise, sometimes, gets to me! Motivation to exercise is important! As a former certified trainer, I know the value of exercise, however! The cogwheel rigidity stiffness, that I get from having Parkinson’s, which can be painful, compounds my not wanting to exercise! Taking my Sinemet medicine on time, each day, helps that! I have modulated my heavier exercises over the years, to lighter weights, to compensate for my advancing PD symptoms! So, now, at 76, I mainly concentrate on range of motion, stretching exercises, each day!I force myself to do them, even though I feel stiff - 3 reps. - 10 each -slowly, not fast. I do this mainly with legs, feet, arms, hands, and neck! Also, at least 3 times a week, sometimes most days, I do exercises, specifically, for Parkinson’s. My local chapter of the National Parkinson’s Association, provided me with an exercise sheet! All these exercises are designed to limber up the stiffness! Important to remember - pushing myself to go through the exercising routines slowly, overcoming the stiffness discomfort sctually works!!I’m much better for it. I’m in stage 3 of Parkinson’s where my autonomic system is affected, which makes it even more challenging! After all the exercising, amazingly, I am able to move in a smoother fashion, without much stiffness, and I feel so much better! Another motivator for walking exercise, when I feel stiff, and don’t want to do it, is that I own a puppy, who demands to be walked, 3 times a day! I have a Bichon Friese, which has the ideal temperament, and intelligence, to be the perfect match for me! Walking, with balance issues, etc. can be very challenging for me, at times, but I force myself to do it! I wrap the handle on my dog’s leash, around my wrist, and have a non slip, collar, with very secure fittings, to ensure my dog does not get loose, from my grip! I have fallen several times, losing my balance, along with a few freezing episodes, so it is not easy. Additionally,I am a caregiver for my elderly wife, who is handicapped! She suffers from heart failure, after having heart bypass surgery, about 30 years ago, 3 heart attacks since, and 4 stents since. Her Docs said they can’t put in any more stents, so her heart ejection factor is very compromised, and she is often short of breath. I take care of her, and do most of the housework. Sometimes, my daughter comes to help. She is a registered nurse, with a college degree, and is a big help! She chose and bought the Bichon Friese dog for me, as a companion dog! He takes my socks off, and gets my slippers for me, each day! Also, one must have a sense of humor, whe faced with exercising, whe one does not feel like exercising. I’ve shared my story, because I’m hoping it will inspire your wife, to know the importance of exercise! My Docs are amazed at how well I function, in spite of the progression of motor symptoms, having swallowing, breathing, and tachycardia problems ( all due to Parkinson’s Disease ). I hope your wife will pursue, especially, range of motion, stretching exercises, in spite of her stiffness! It’s best to start slowly. A few days one set of 10 reps, before going to 3 sets of 10 reps. Stretching to warm up, and, after exercise, stretching to cool down, is important, so as to avoid any cramping/discomfort. Wishing you and your wife te best!
M
Dougie Woogie. I have no idea how you get the energy to raise a pup at your stage in this dreadful illness! I would love to get another Havanese but sense that PD is stopping me care adequately for this one, let alone find the energy for puppy training. Fair play to you matey.
One problem is toes have curled under so badly on affected side that I’m virtually walking on nail beds. I don’t walk with much enthusiasm sadly. So my dog doesn’t get the full walks he needs 🤔🐶☹️
Hi, good buddy! How did you know that I have the same problem with toes curling!! Ha! It’s so aggravating! I get ingrown toenails. Yes, it gets painful to walk my dog! First, on my affected side, and now toes curled on both sides. What has caused me to fall a couple times, walking my dog, however, is painful muscle spasms, on the bottoms of my feet! When that happens, and my balance is off, I have fallen! It doesn’t happen too often, but when it does, YIKES! My dog is patient, and just licks me, doesn’t want to run away, when I fall! I wear a big military coat that cushions my fall, so, most of the time I don’t get hurt! My Nurse Daughter bought me a watch, where it can sense a fall, and I can get emergency help call real easily, by speaking, into the watch ( cause it’s a phone, too ), or pressing the stem of the watch. Also, now that I have Supraventricular Tachycardia, ( because of PD ), my watch can do ECG, and heartbeat monitoring. So, I feel better about getting help, if I do fall! The benefits of exercise, for people with PD, is valuable, in my opinion. Good luck to you! Always good hearing from you, Adam! Doug
Try B1 for fatigue.
Results: Ten patients out of twelve showed complete regression of fatigue, while the remaining two patients showed nearly complete regression of fatigue compared to the chronic fatigue syndrome scale scores before therapy.
Conclusions: The administration of large quantities of thiamine increases the concentration in the blood to levels in which the passive transport restores the normal glucose metabolism in all cells and leads to a complete regression of fatigue. pubmed.ncbi.nlm.nih.gov/233...
My opinion don’t overdo B1 without considering HDT for PD. amazon.com/Parkinsons-Thera...
And consider Joining Facebook facebook.com/groups/parkins...
Baby steps will become more and more. You have to start somewhere!!!
Have you tried using Youtube? the instructors are so encouraging and their smiles remind me I too must smile.
Thank you for posting this question in what has become for me the most interesting, useful, explanatory thread I have seen on PD.
I am 5-6 years in and I suspect I am at times in a similar position to your wife. I am reasonably apathetic about exercise generally and always have been though I discovered that I can alleviate pain and muscle weakness by simply going for a walk!
But when I am having episodes, principally in early morning and sometimes in the evening, (and my episodes are always very short term) when I can't balance at all because of muscle weakness, if anyone suggested exercise, I'd think they were being pretty unhelpful and I wouldn't react well at all!
I'll bet it looks to onlookers like apathy.
You may find that (like me) she doesn't react well to being indoors and in confined spaces? But that once outside, when she starts walking, most of the symptoms, - and even the pain, - dissipate?
Thank you!
Patrick, I can totally understand what your wife is dealing with. I am 68, diagnosed in 2015. My symptoms are bradykinesia , fatigue, anxiety, apathy, lack of motivation, balance issues, swallowing issues, poor fine motor skills, illegible handwriting,speech sometimes slurs, trouble rolling over in bed, weakness, rigidity. I do not have tremors and thank God I can still walk unaided.I am on Rytary and I am doing the b1 protocol by dr. Constantini for several weeks (no improvement in symptoms yet). I used to be a dancer/cyclist prior to diagnosis. I lived an exercise lifestyle my entire adult life. I racewalked, weight trained as well. Until covid in 2020, I had been doing Rock Steady boxing twice weekly. I highly recommend it. But, I believe my Parkinson’s honeymoon is coming to an end. I am finding it harder and harder to exercise, the apathy, fatigue and general feeling of weakness are overwhelming. I would prefer to sit in a chair rather than exercise. It is a cruel irony that symptoms of this disease prohibit us from doing the very thing that can help us. I wish I had an answer. If I see one more article that says exercise is the best thing for PD I think I will barf. I know that, but fighting the symptoms that prohibit me from exercising is becoming increasingly more difficult to do and my ability to go on “autopilot” to get motivated and attempt to get through a daily exercise session is waning
Thank you for sharing your story. I wish you the best of luck, dealing with this nasty disease. Of all the ills that might've befallen me or my wife, I'd have never for a second thought she'd suffer from PD some day. And we're slated to travel out of state for Christmas, where I now dread having to go through the nightmare of the whole airport experience (even though I've arranged for a wheelchair). Again, best wishes to you, hang in there!
Patrick
it is a nasty disease with so much uncertainty. ir blew my mind when i was diagnosed, i ate well,exercised, but i am not sure if that mattered. i pretty much have given up on travel due to the anxiety and crowds. may you and your wife have a happy holiday,,
Eight years in at 79.
Re exercise: there is NO substitute. It’s like oxygen. So work out thru practice two levels:
Challenging & Minimal
Go to the gym shooting for Challenging, but don’t leave until at least Minimal is achieved. Some days it’s good to show up, and be sure to do so 5 days per week.
Has worked for me…
Hope this helps for you
Personally I believe a big part of the problem is depression. Being a member of a group, any sort of group, could help. I go to tai chi classes weekly. I'd like to find a meditation class. I've heard rumors of a meditation class forming at the same place where I go for tai chi.
When my wife was diagnosed with cancer her oncologist referred her to a stress reduction clinic based on Jon Cabat Zinn's meditation work. The class wouldn't accept her unless I came with. Meditation while seated is easy to learn and painless. None of the bending-like-a-pretzel stuff you might have seen in Chinese videos. Zinn wrote several books on meditation but a class is best to start with.
If she takes a class it might spur her on to try exercising. Walking Meditation is a part of Tai Chi.
youtube.com/watch?v=CPkKRUw... This is my instructor for tai chi.
Thanks to everyone for their responses! They are very helpful to me. I used to be a regular exerciser before diagnosis, but have trouble getting a consistent pattern/being motivated these days. When I first started going to the gym/pool I made a deal with myself which worked brilliantly and I recently began incorporating it again. I don't "have" to exercise...I just need to show up at the gym and then when I get there I can made a choice to either go in or not. Incredibly, I don't recall ever not actually going in. The same trick could be used with walking...I just need to put on my shoes and walk out the front door and then make a choice. Then I don't "have to" do a gold metal workout every single day. Sometimes I can do a little easier workout. Personal philopsopy these days? ANYTHING is better than NOTHING! I personally have no excuses at this stage of the game other than just being busy/lazy. All the very best!
My friend said he was sad that he could no longer do what he did when he was 30. I told him that he could still do what he did when he was 30, he just had to remember that it was going to take longer and it was going to hurt more. He couldn't just sit there, he had to keep doing it.
What about an outside "expert"? Like, have a physical therapist come to your house (I think insurance will pay for that...did for my dad) or a personal trainer, or pretty much anybody who isn't YOU.
I think it might be like helping your own kid with his math homework. The relationship just somehow can get in the way of the encouragement. Does that make sense?
it gets very difficult. Hubby is almost wheelchair bound. We found a good physical therapist who comes to the home and gets him up on our treadmill and does stretching and seated boxing and rowing. He’s never too happy about it but he is able to do the work with the support of a good therapist. Might be something to try.
He also tried and liked the Parkinson’s community exercise groups as they have a social aspect. Power for Parkinson’s or his preference is Boxing.
Try to find ways to make it easier for her. It’s so important and she can still do it!
Yes, this is hard, but so important. For me, two things have helped with getting moving… Music is really important to me and I put some great dancing type music on with a good rhythm, with good instruments, good guitar playing and I start to feel like moving and dancing around a bit, and then it kind of works my way up to an exercise. I also take my meds first thing in the morning with a Enada NADH B3 sublingual. I have breakfast half an hour later and then I am energetic to do exercises but you got to get started. That’s the key. once you get started, you feel more like continuing on.
how’s your wife now? Is she exercising?
My wife feels the same keep working on it exercise is something a lot of people never did and do not understand the value. Doctor's disagree and rather encourage medication so talk to your doctor see what he says.
gastroparesis and PD
Exercise
Exercise? 
It’s a lonely road with PD. 
