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Topic Big day tomorrow! Go to previous topic Go to next topic Go to higher level

By brandila On 2007.11.25 22:54
Well, tomorrow we see the pd specialist for our second annual checkup. I'm really scared for some reason. Last year when we were going for what turned into a diagnosis, I was fine. We pretty much knew my hubby had pd, so it didn't come as a surprise. But this year is different. I don't know why . . .

I'm planning to rat my husband out. The dr. very clearly told us how important exercise is for pd patients, but my husband has not exercised one single time in the past year. It's sooooo frustrating. I bought him the book, "Parkinson's and the Art of Movement." He says it's more for people who are really bad off. I'm going to ask the dr about that.

Anyway, wish us luck! I'll let you know how it goes.

By Pick On 2007.11.26 13:38
Even if the suggestions in the book aren't appropriate for the stage he's in I'm sure his doctor can recommend exercises that are. From what I understand exercise is extremely important for parkies, but one of the many cruel ironies of this disease is that it robs patients of their motivation and causes them to lose interest in their surroundings. My dad's Physical Therapist told him to think of his independence as a savings account. He only has so much left and each day he doesn't exercise is a "withdrawal".

Don't know how much that will help with your husband but it does sound less 'naggy' then "you need to do your exercises". I also try to inspire my dad to exercise by making sure I regularly go to the gym myself....worked in the beginning but not so much these days. You might give that a shot. Anyway, good luck!

By mylove On 2007.11.26 13:49
Are there any activities that you both enjoy together? Sometimes you can sneak exercise in as "spending time together". ;) I'm thinking of things like walking, hiking, or just getting out and about, if that's still within his reach. Try to find things that he enjoys anyway, and join him, by all means. This would encourage him to remain active, while maintaining that bond between you. Try new things, as much as possible. Keeping the mind AND the body active are key to maintaining ground.

Good luck, and please let us know how it goes! I wish you the very best.

By Gidbud On 2007.11.26 14:54
brandila,

My wife has found exercise to be a *HUGE* benefit to her battle against Parkinson's symptoms. She was featured in a fitness magazine at my company's fitness center. You can see the cover here http://www.flickr.com/photos/9675628@N08/2053291066/
and the story http://www.flickr.com/photos/9675628@N08/2053276346/ .
She was diagnosed July 2006, so she is in Stage 1 PD, but she plans to continue exercise as long as she can.

This may or may not motivate your husband, but it may be worth the try.

-Gidbud

By LouAnn On 2007.11.26 21:35
How was the checkup today? Good, with positive results, we hope!

Exercise--what worked with my elderly Mom so stubborn and set against anything "different" was when I would exercise with her, always using chairs.
We would hold the back of the chair and swing one leg back and forth, then the other; sit in the chair and roll our shoulders back and forth; rotate our feet round and round, etc. She nearly always would exercise when I would accompany her.

Best wishes and prayers, Lou Ann

By brandila On 2007.11.27 15:58
Well, our appointment was much better than I had originally thought it would be.

Keith is in very early stage 1, so he can still get around pretty well. He does have some tremors, but the most noticeable sypmtom is his stooped-over posture and his shuffle when he walks. He is also developing the passivness and apathy that is common with so many parkies. Other than that, he is doing great. Last year the dr prescribed him the smalled dose possible of Mirapex, which he has only been taking half of that. So the dr wants him to slowly increase the dosage to what he had originally prescribed. He was very disappointed that Keith had not quit smoking or done any exercising in the past year, so he set us up with tons and tons of info for that.

He also disagreed with Keith about the book. Even though it appears as if it's directed to those further progressed, it will still be very beneficial to him.

I have to admit that I am really struggling with this particular issue. I am not sure it his refusal to exercise is pd related (passive/apathy) or is more out of being stubborn. I mean, he has never been one to adapt well to change. He likes to smoke and eat unhealthy food. He does not like to work out at all. He always says that when his time comes, it doesn't matter how much you work out or how healthy you eat. He just doesn't seem to believe that he can contribute at all to his own health. (???) But I really think the dr finally got through to him!!

I guess we'll see I guess . . .
Thanks for all the replies!

By Pick On 2007.11.28 09:32
Hi brandila,

Is it PD or is it "just him"? That's why the psychological symptoms of PD are so hard on the caregiver. It's relatively easy, when you're changing a diaper for the 4th time at 3 AM, to remind yourself that he can't help it. The psychological stuff is much more subtle and often hits us where we are most vulnerable. I cried a year ago when, after extensive testing, my dad's doctor told me he *didn't* have dementia. I thought 'so he really does believe that having me ruined his life' because he tells me this all the time. Even now that he is diagnosed and being treated for psychosis it's often impossible to distinguish between what's PD psychosis related and what's him just being a.....I will use the word "jerk" haha. Not only is it inaccurate to attribute all behavior to dementia or psychosis it's also not fair to the patient.

Getting back to your husband, though, I think there are two kinds of people when it comes to degenerative illness. There's the people who, like Gidbud's wife, say "I'm not going to let this beat me. I'm going to make the changes I need to in order to fight this disease." Then there's the people like my dad and your husband who say "I'm not going to let this beat me. I won't allow this disease to change the way I live my life." Both types think they are fighting, but only one is right.

This isn't meant as criticism. I'd like to think if I were diagnosed I would be like Gidbud's wife (she is truly and inspiration, btw, ty for posting that, Gidbud) but who knows? Of course your husband is wrong about eating healthy and working out. If he starts resistance training now, for example, his bone density *will* improve that's a medical fact. And believe me you both will be grateful he did when he starts having falls. Ask a physiatrist about the statistics for patients admitted for hip fractures. About half of them spend the rest of their lives in skilled nursing.

Anyway my 2 cents just turned into a nickel as Al says haha. Good luck!

By brandila On 2007.11.28 13:44
Thanks for the insight Pick!
You nailed it - my husband is definately the "I'm not going to let it change my life" type of guy. I say he's a defeatest, he claims he's fighting. It's been perhaps the most difficult part to deal with, as I have never been the type of wife to nag. But now I feel as if I'm backed into a corner. I certainly don't want to nag him, but I am really at a loss as to how to get him to help himself. I just pray every day that he will "see the light" and make the necessary changes.

Yesterday I did a ton of research in our area to find places that offer aquatics and such. We live on a lake, but obviously, we can't swim in the winter. Anyway, the cheapest place I could find was the ymca, and I know we could afford it, but he says it's too expensive and not at all worth the money. Sigh. I just want to rip my hair out sometimes!!!

I'm going to spend more time doing more research on exactly the kinds of things you mentioned - falls, hip fractures, etc. Also, although I don't actually see him attending, we found a couple of really good support groups in the area. So maybe if he see it right in front of him he will be more inclined to make certain changes.

By Gidbud On 2007.11.28 15:48
Pick,

It is my pleasure to share my wife's story. Her success with exercise is one of those things that we celebrate and have fun with today, because we know what the future holds. She knows she will not be able to exercise at the same level as her abilities decline, but today she can!

brandila,
I wish I could offer more suggestions for your husband. You are doing a good thing researching hip fractures, falls, etc. Perhaps seeing the "rock-bottom" of his condition will motivate him to get off the couch. Also keep in mind that there are other ways he can keep in shape other than going to the gym, such as golf, hunting, walking to the store, etc. I wish you the best of luck. He will definitely feel better if he exercises.

-Bruce

By LOHENGR1N On 2007.11.28 16:33
Bran, I've read this thread every day and kept quiet about it. Now lets look at it. I was the kind of "ok well this Parkinson's disease HAS to live with me" (it worked for awhile but it subtly turns the tables on you as later you realize what the heck?!?! how did this happen? P.D. is taking over.) If Your Husband say's He's fighting, believe Him! He's trying best He knows how. Now for exercise, His second annual checkup.....so He can still get around pretty well? .....Take a sip of coffee, let out a deep breath Bran.....it just sounds like some miscomunication here, let's try to fix it ok? To most men exercise classes sounds like ...." come on dear you know the Doc said you need to! So put on your leotards and tutu and prance out to bend and stretch amongst the strangers!"........ (You women can stop laughing now please!). You mentioned you live on a lake? Then encourage going fishing daily! Walking down to the shore, bending to get bait , Baiting the hook (working fine dexterity movment), casting out (stretching), setting the hook and reeling in fighting fish (lots of forward n back arm curls) sounds like passive/active exercise to me (and He can do it in comfortable clothing....no wedgies from leotards!) Now this might be harder to do. Go to wal-mart or home depot and let Him "browse" to His hearts content in the tools! (or sporting goods) He's going to pick up and examine all those wonderful gadgets (bending and squating, reaching and stretching, lifting weights!) sounding a bit like exercise again? See if we look some common everyday things objectivly we can find fun stuff to benefit us and enjoy while also filling some medical advice. For less active even a birdfeered (fill it, stretch to hang it) go inside watch with a bird book ,thumb through pages to identify the birds (fine dexterity movement exercise). Just some suggestions but I know I like walking (even with a cane and service dog) better than the thought of pirouetting around a gym (ack!! I suppose I sould say spa?) in a tutu! Well, there's another nickels worth....give it some thougt. Take care, good luck to You & Yours!

By Pick On 2007.12.07 11:59
I've read your post a few times now, Al, and each time it cracks me up. Tutus, eh? Oh well haha.

Of course he's right. People tend to stick with exercise programs when it's something that's a part of their lifestyle and something they enjoy rather than something they 'have to do." For my part, I enjoy going to my gym and hanging out with my "gym friends" in our tutus. What seems to work best for my dad, who I would not describe as a "joiner", is to bring this really wonderful PT to the house once a week who shows him exercises and stretches he can do at home.

I confess I used to nag my dad, brandila. It was scary watching him decline while he did nothing to slow the progression. And you may understandably feel some resentment as your husband becomes more and more demanding of your time to assist with tasks that perhaps he could do on his own if he had only kept up with his exercise. I also worry a lot bout the day my dad is finally bed-bound. Will he spend all his time lost in regret wishing he had done more to postpone his immobilization? Of course it's no fun being a nag but guess what? It's not good for him either. Even though my dad's neuro would love to see him exercise and do more therapy, she basically told me to back off and let him do what he's going to do rather than stress him out.

By packerman On 2007.12.08 12:39
Brandila,
know what I just did? I signed up for a family YMCA membership.
"I" am going...but Tom is invited. hopefully, he'll join me...at least sometimes.
I plan to share how good it makes me feel to work out and how much more energy I have because of it. (I do have about 50 lbs to lose.)
plus, they have a yoga class that could help with my/his balance.

hugs,
Pat

By LOHENGR1N On 2007.12.08 16:36
Ok, ok excercise is of benefit, however.....where one is in progression of disease and responce to meds is just as importiant. Don't expect good response at "off" times. We had a pt at one support group and I brought up medstime responce and She said that it is so importiant....she never realized just how much fluxuation (sp. I'm bad) there was until she saw a regular patient of hers who was in every morning on the treadmill etc. looking like nothing was wrong with her! then she came in and couldn't even do the treadmill! When she was tring to find out what caused this drastic turn of events she saw this was an afternoon app. and her med level was on the downside at this time of day! Also you caregivers have another balancing act stress makes P.D. worse! So tread lightly on the "reminding" to exercise. Pat, yoga? (ok Pick here's another mental image for you since you liked the tutu so much) Gosh, help with balance? Hum I can see me now frozen crosslegged being carried about by the arms to be set here or there, however I tend to "run" with a crule crowd....I can just hear them hummimng or singing toteing me along..."I'm a little teapot sort n stout".... lol well I gotta run good luck with the exercising everyone, it IS importiant and if I make light of it, it's just my way of coping and even just shuffling around is better than standing still! Oh on a side note! Keep an eye on dehydration!!! Did you know In warm weather just having P.D. is the equivelent of moderate exercise? (also cold weather warm gyms) The tremmors and diffaculty of movement. Take care all and happiest hoildays to all. hum humm hu hum tip me over n pour me out.....wink! as always Al

By mylove On 2007.12.28 18:50
I was really impressed by my love this morning.... 6" of snow, and he still ventures out to scrape my car windows. Bless his heart....

Been watching this post for a while. I've been thinking about the same sorts of things as you, brandi. I'm thinking about taking up walking the dogs when the weather breaks and gets less grim. I know he'd go with me if I asked (and if it were at the right time of day - must remember that). I know I sure could use it, too. ;)

Best of luck and Happy New Year, to everyone!! We may not make it to midnight, but wahoo anyway! lol


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