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Topic Wondering, what's your take on this? Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2016.06.07 15:59
This has been running my mind for awhile now. I'd like to know what Your take on this is? Exercise, We all know it helps everyone. However I can't help but notice Our community is unique, almost standing alone in some respects. Cycling, swimming, boxing, large and loud, and a plethora of others each with there own proponents. Our web sites, organizations and associations list them. They tell us our terminal disease isn't terminal it's chronic. Yet all over social media we can see posts of things not to say to people suffering from chronic illnesses. On every list of no nos is if you exercise it will make you better or exercise will help cure you. ALS, Huntington's Disease, various cancers and the list goes on. But Parkinson's Disease? We are brow beaten with exercise, exercise, exercise. The results can be disastrous. If we are wiped out from activities of daily living and don't have the gumption to exercise because of the way it is hammered into the psyche then we are lazy or don't want to help ourselves? That is far from the truth most times, but by preaching exercise it leaves loved ones and caregivers thinking that and causes hurt feelings many times. All over social media one doesn't see patient x or y had a hard go of chemo yesterday and now won't go cycling today (no one expects them to) however if a Parky is adjusting med's or had a rough day the day before and won't go cycling? Why that lazy oaf! They won't help themselves, they're being lazy. They just don't care and are being selfish not helping themselves? I'm just wondering why on the list of things you don't tell chronically ill People (or other chronically ill People) it is okay and seemingly open season to tell Parkinson's patients.

Exercise when you can My fellow patients, find one you enjoy. Exercise because you enjoy the activity and if you're not up to doing the exercise at times don't do it and get hurt. From what I've been reading lately others battling terminal illness or chronic illness aren't expected to.

By lurkingforacure On 2016.06.07 16:38
Good points, Al, and I would also add that PWP shouldn't exercise if their meds aren't working. I've read that can cause injury.

I no longer ask or remind my husband to exercise. I figure he will when he wants to, and doesn't need the stress of me asking him to.

I wish the medical world would be honest about PD and call it what it is: terminal. They do in Europe and other parts of the world. People might be more compassionate and realistic in whatever expectations they have about PD and PWP if they knew it ranks right up there with cancer, ALS, etc.

By flowers12 On 2016.06.07 17:43
If I didn't encourage my hubby to exercise he just wouldn't. Some days time flies and I forget and he doesn't remember. I'm not as good about getting him going as I was 3 years ago. I'm afraid he will become totally dependent on me to lift him and move him around. That day will probably come no matter what he does but for now I want him to be able to move around on his own. He's not happy about being so limited in his mobility and doesn't want to use a walker or transport chair.

By makrivah On 2016.06.08 10:10
Al, I've been thinking about your post a lot. Why won't experts classify PD as terminal? Maybe to keep hope alive? Then that would apply to all the diseases you named (cancer, ALS, etc.). Because there is no cure and chronic sounds less dramatic? All that does is push PD into a lesser role. Because the life expectancy of a PWP varies so widely? Cancer(s) is the same. Because it is an OLD persons disease in the minds of the uninformed public? "They're ready to die anyway." And it goes on.

Likewise with the mantra we hear, "just keep exercising and you'll be fine." Poppycock. I'm so tired of people saying to us "you look great! You are not shaking much. You must be getting better." That's a tough one to hear. Because my husband has bought into the myth of non-terminal, he has fallen into the trap that he will get better. Then the frustration and depression rear up when he doesn't get better and instead slips a bit more.

I hectored him for several years about doing more to no avail. Now I let him set his own pace.

His current status allows me to leave him alone for lunches, classes, etc. with girlfriends during the day. He says he is content to watch tv. Let it be. What will be will be.

I had hoped there would be more education about the ravages of PD with the death of Ali. I might have missed that coverage. It certainly seemed to be underplayed.

By lurkingforacure On 2016.06.08 12:43
I think it's been downplayed because Ali partnered with Fox (who is also struggling), it was a big deal, millions of dollars raised to find better treatments, a pill to slow progression, even a cure, and all this time later, nada. I am tired of reading about new drugs being developed which actually are just versions of sinemet, same-old, same-old. It is depressing and I no longer share my research notes with my husband because I don't want him to get upset too.

While I think most people understand how slow the drug development process can be, it's pretty hard hearing that famous, wealthy PWP who fought PD with all they had, still lost the battle. I still can't get over the loss of Andy Groves, who better than that brilliant man with gobs of money to make real progress in fighting this disease? So very sad.

By LOHENGR1N On 2016.06.08 16:14
Mak, a couple of years ago P.D. was included on the list of terminal illnesses in the U.S. 15th if I remember correctly. Which is huge because more research time and funding goes to terminal diseases. about 8 years ago I received in the mail a wallet card from N.P.F. on it it stated P.D. isn't terminal. I called them and questioned them on it and was told people just diagnosed have enough to worry about and be scared of without telling them that too! So basically you lie to them I said. They responded with it would be too upsetting to them to tell them it was! So that's as far as it went with them as I pressed more they asked if I had any other questions if not good by and good luck. And yes it is a void at the end of the "champs" life without more addressing P.D. and the roll it had in ending his life.

By makrivah On 2016.06.09 10:02
An earlier post mentioned Andy Grove. I looked him up and found this disheartening article from Forbes magazine in 2008! Eight years later nothing much has changed. http://www.forbes.com/forbes/2008/0128/070.html

By olpilot On 2016.06.11 04:00
It has been sometime since I've been here. My wife and I started out on this grand journey to travel in our motor home and see the country, at least as much as we could. It has been good, and it has been bad. For her great she sees what she wants a goes for everything with gusto. Me not so much. This summer are at a KOA in upper Wisconsin close to family and friends. My job is to drive a golf cart and sell firewood. Not to bad, it I load the bundles myself. If it were normal exercise eventually I should expect for it to get easier and build muscle to help.seems it is almost the opposite, right now I can hardly hold my hand and forearm up to type this. I would swear that sometimes the steerin wheel on the golf cart is seizing up on me. I do this three days a week and I sleep all the 4th to catch up. I have become afraid of the possibility that like the fuel tank on a car I have only so much energy and no more. It just never seems to fill even a little. My wife says "exercise is good for you, i think she thjnks i just don't walk to go on miles and miles of walks. I can't, I really can't, I would love to do thos 8 to12 mile hikes we did in the .ountians nearly 20 years ago. ......allong with the other things we could do back then. Exercise sounds so good, but I am coming to the belief that we only get so many heart beeps, maybe we need to use them wisely. If exercise helps go for it, if it just seems to eat you up........well maybe you need to look for so.ething else.

By carman96 On 2016.06.16 00:22
Yes, it bothers me when people claim you can cure or postpone symptoms with exercise. Try to make you feel bad if you're not try I g to run marathons. If you can do it and like it, go for it. But PD will beat you at some point.
My husband doesn't get a lot of exercise because really he can barely stand or walk by himself. He falls a lot. It's bad enough with PD but add the Dementia to it and his body won't do what he wants.
I bought him an expensive sit down elliptical but he only uses it a couple times a week. Hard to get him on it.
I think he does a little better if he goes to PT, but he's reached his Medicare cap for now.
Al, I'm glad that the Dementia didn't get you and you're still around to give advice.

By LOHENGR1N On 2016.06.16 15:03
Thanks carman, that is very kind of you to say. You put a smile on me today and a warm glow in my soul.

By jcoff012 On 2016.06.18 19:43
We have spent almost two weeks in the hospital with our son. Eight years ago he had triple chemo for months, then radiation for as long for testicular cancer. All these years later, his legs began swelling and when he went into the hospital, they found a large blood clot, enlarged heart, and kidney damage so severe he gained 42 pounds in that first week! So, it has been touch and go these two weeks. Why tell you this? First, to state that the doctors told him part of HIS cure was to exercise! He listened while we sat there, but said, "Mom, no way. I couldn't walk, let alone exercise!" He says he s going to build up he stamina soon by walking, but said almost the same sentiments...exercise will help me, not reverse the damage already done.

And, I thought of PWP...damage done, no cure...exercise helpful for well being, but NOT a cure! Carl LOVES to try out new exercises, programs, etc...he still can. I don't force him, he just enjoys them. But, he is a realist... When he tires of one, he goes to another. His choice.

This PD affects us both, but it IS his disease... If HE wants to exercise, he does. If not, so be it.

I do agree, doctors, say that exercise you enjoy can help you feel better, but don't say it is a cure! With or without it, PD marches on! Sadly.

By carman96 On 2016.06.19 09:04
Jane, sorry about your son. Hope he is improving by the day.
That's a good way to put it. Damage done. No reversal.

By carman96 On 2016.07.27 01:47
I know this is an old post but I read another article about an MDS that was giving a lecture. He said that if he had PD he would exercise as much as he could, and don't give up.
It made my blood boil. He doesn't have it and I don't care how much he knows about it, he doesn't know what it's like.
I see my husband struggle daily. He needs assistance with everything.He freezes and falls. His dementia keeps him from following directions. His mind just isn't telling his muscles what to do. Isn't that what lack of dopamine does?
He is going to occupational therapy but halfway through he stiffens up and can't do the exercise. Then I can barely get him in the car.
It seems too often we hear of someone with Parkinson's lose the battle. If someone dies of cancer, no one says "they should have exercised more""
Maybe "they" should quit bugging people to exercise and find a cure!!
Sorry, rant over.

By makrivah On 2016.07.27 21:10
An observation:
my PWP goes to a one hour PD exercise class M-W-F, faithfully. That exertion exhausts him for the entire rest of the day. Where is the quality of life on that? One hour of exertion = 18 hours of sleep = loneliness for me = he does nothing mentally stimulating = further cognitive decline.

If one more person says to me "He looks wonderful! He doesn't shake at all" ... I will scream out loud in the middle of the street or wherever.

I am continually confounded by the total lack of knowledge about PD in the general population.

By carman96 On 2016.07.30 01:04
Yes, any exercise wipes my husband out.Then it's harder for me to take care of him. Just getting him dressed, to the toilet, in and out of bed, brushing his teeth, it's exhausting for me.
I'm going to start paying for extra caregivers time. I just don't know how long I can do this.


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