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Topic The other side of the fence Go to previous topic Go to next topic Go to higher level

By mylove On 2010.01.20 00:53
Dictated by request from Shaky.

Sit in your chair. A nice comfy chair, one you always enjoyed. But don't sit in it all stretched out and relaxed. Lean over on one corner, because that's as much as you can get into it. Or lie in your bed, a nice soft bed. You always enjoyed a nice soft bed. But you can't quite get turned the right direction so that your body and your legs and your arms are all able to relax.

Stand at the counter. You have stood at the counter for years. But don't stand there because you enjoy it; stand there because you can't move any farther. A pool of exhaustion sucks the very life out of you. Your muscles ache, from the top of your head to your toes. You hope that the next pill will give you enough energy to at least go to bed, or to go find a comfy chair and at least sit comfortably, not huddled over or slouched to the side.

Shaky, whose pills have worn off


By LOHENGR1N On 2010.01.20 01:15
I hear ya Shaky

By packerman On 2010.01.20 10:24
thank you SO MUCH for helping me better-understand what my husband goes thru just to get around. i can see how he struggles, but you have put words and feelings to what i have observed.

By Mary On 2010.01.21 10:07
Shaky, thank you for putting the other side into perspective. Hugs and blessings, Mary

By dkleinert On 2010.01.26 02:51
Shaky, Thank you so much for giving us your perspective - it helps so much. I see my husband go thru the same things. Now I have a better idea of what he does not express. Hugs to both of you!!

By LOHENGR1N On 2010.01.28 00:39

I thought I'd post this again for some of the new arrivals on the forum.

I found this story and just had to link it to all of Us here. While it isn't about P.D. or caregiving per say, it is a wonderful illistration of living with disease and it's effects on both the ill and those who care for us! I wish you all enough "spoons".
Please give it a read!

By mylove On 2010.01.28 09:05
Al, thank you so much! Two things, this morning -

The spoon theory is one of the things that I try to keep in my head all the time. My sweetie spends so very many of his spoons on me. I try to make sure that I don't abuse that and that I notice when his 'drawer seems to be getting low'. It's important that expectations for the day be realistic, so we can get the most out of our time without costing a deficit for several days afterward. It does take some amount of finesse.

Secondly, in our haste to post this original post (done in the middle of the night on a bad night), I posted his handle a bit shorter than it should have been. He usually goes by Shakydog here on the board. Another PWP and a very good friend also visits the board from time to time and uses the handle Shaky. Sorry for the confusion if there was any. :)

For any of the new arrivals, Shakydog has YOPD and we are in the earlier stages of the game than many of the other participants here. However, we do face many of the same issues. Shakydog also was a PD caregiver for many years of his life, so he has a unique perspective of both sides of the fence. Welcome to all, and I hope we have something to offer you.

By karolinakitty On 2010.01.28 21:15
Thanx Shakydog ...... How i see that in my man ......
Thanx Al .. good story.....

It's hard to try to put yourself in their place when we get clouded with the "daily duties" of caregiving. I think what's harder still is to see the pain and the energy it takes for them to do what we take for granted.
As my man has serviced, repaired and sold reels on the side for many years, and knowing that he could repair at least 10 on any given day. Now to see him struggle to go totally through one reel and have to stop because between the pain and mental frustration of not being able to do it like he used to has to be maddening. Let alone taking showers and getting dressed take much more energy and time then in the past. Everyday parts of life that we go through takes them longer and drains them more then we can imagine.
Yes, the caregiver work is hard. Trying to do so many jobs at one time, but we have the ablitlity to do that. It may drain us a little and take us over the same things time and again. Yet we can still hop out of the chair, have no trouble getting in or out of our shower,drying our hair, eating our food or even going to the bathroom like a spring chicken comparably.
Mine sometimes sets his limits too high....then runs out of "spoons" for the day. He's getting in the groove now learning just how many spoons he needs that day, that's a big step..........

By Mary On 2010.01.29 15:56
I hear what you are all saying and my heart breaks for my father and all that he suffered at the hands of this disease. I have not walked in his shoes nor has he walked in mine as his caregiver so we can only understand to a point what each other has gone through. I do know, however, that his journey was much, much more difficult than mine. As caregivers AND those with the disease, "coping with terminal illness is more than hard work -- it is all-consuming and creeps into every corner of your life. There are so many people to talk to, so many questions to ask, so much to do. The hopes and triumphs of new or different treatments can change quickly into fears and failures. It's an exhausting emotional roller-coaster ride. It's like having an unwanted and uninvited stranger in your midst, who seems to take up more and more space. " I took this from the book Final Gifts.

By Lynnie On 2010.01.30 11:13

By mylove On 2010.02.12 11:47
Found on today's message from Peter Dunlap-Shohl, who puts it really nicely (if heartbreakingly). His post today was entitled "A Benediction":

This is one for the rest of you. Those who feel no sense of accomplishment or relief at your freshly buttoned shirt. Those who order soup without a tactical plan to ingest it. Those for whom keys find their way into locks and whom keyboards meekly obey. Those that rise still blurry-eyed from sleep, fumble for a light switch, ease on your slippers, and pad down a hall without hesitating, without false starts, without halting and without waiting until the mysterious force that holds you releases you, just as mysteriously.

This is for those that can smell breakfast cooking. Those that can crack an egg, and peel an orange. Those who idly throw a switch, walk the dog, phone a friend.

This is one for the rest of you. Those not awaiting the next blow. Those not wondering what new humiliation will be visited on them by a mindless yet fiendishly creative disease. Will it be a strand of drool that slides from your mouth? A slur in your speech? A stumble in your stride? A covert stare? An averted glance?

You are out there, are you not? Those who, at every slip of memory or momentary loss of balance, don't ask if this signals the start of some new phase of loss. Those who have no doubt about their sovereignty in the home of their own body. A body that doesn't clench unbidden, or beat restlessly of its own accord. A body that doesn't require a carefully sorted and gauged supply of pills in order to perform approximations of the simple tasks of life.

Are you listening, those for whom disease has not become habit?

This one is for you. This one is a fervent wish that you glory in the miracle of unconscious coordination that is the not-so-simple act of rising from a chair. That you revel in your ability to casually scribe a clear, spontaneous line. That you take joy in your certainty that your hand will obey when you command it to caress or create. That you thrill at the arc of your speech as it cuts a bright path to the ear of your listener. That you live a life informed by the realization that there is no "ordinary".

By LOHENGR1N On 2010.02.12 15:20
Thanks ML, Beautifully written and expressed......A wonderful glimpse from "Our world" out to the one that has left Us behind. Thanks for sharing! Sincerely Al.

By LOHENGR1N On 2010.02.17 15:38
Been quiet here the last couple of days, I hope that is because things are running as smooth as things can run with Parkinson's Disease?

As for Myself, things could be better, but then things could always be better and things could be worse, which in time they will be. (but that goes for life in general anyway) I've been going through a period of can't hold on to anything! My cane, the Dogs leash, the coffee cup, change, you name it I'm dropping it or tossing it!

The only consolation to this is the snow outside, tossing a snowball is just good for the soul! I find it best to toss them when the neighborhood kids are out. That way if happen to hit the mark so to speak I can point at the kids as to blame ......... what, hey it works, ... really, Who'd think a 57 year old man leaning on a cane was throwing snowballs when a bunch of kids are frolicking nearby? Well just figured I'd shout a "Hey" to all and to the other P.Der's here, remember to take your med's and raise a little heck now and then! Take care, best of luck and hang in there!

By Emma On 2010.02.17 17:02
Al, I've been thinking the same thing ... it HAS been quiet around here.

Sorry to hear that you're dropping things, that has to be frustrating. Hopefully it is something that will pass.

I'm glad you like the snow, personally I'm sick of it. I do have to admit however that it's a lot of fun to watch my 10 month old granddaughter get pulled around in her sled with just those big blue eyes peeking out of the snowsuit :) She loves it!

Take care!

By karolinakitty On 2010.02.17 19:16
Quiet Indeed!!!!!!

Hoping like Al, most have leveled off and the real serious problems are in check for a minute. OR ... Everyone has been giving us such good answers that we kinda know what we're dealing with.

With the new RequipXL and Aricept added to our list, things are fairly smooth this week. With the financial burden lifted a little, both our stress levels have decreased. He had a real rough night the first night on XL. I don't think he stopped moving all night, last night was a little better, he got about 4 hours sleep then couldn't "relax" anymore but I'm hoping tonight willl be better.
Talk about throwing things, his latest tremor is one on the right side, where he flings at the elbow. Can be kinda silly when he's trying to hand me papers and OFF THEY GO...... so, of course he can't bend and i'm left picking them up... :) , but it does come in handy when playing with the dogs!!!!!!!!

By packerman On 2010.02.18 10:03
funny story:
once, when we were in the living room, my hubby "whacked" me in the shoulder with a dyskinesia, apologized for it, and then (with a gleam in his eye and a silly grin) did it again and claimed "must be the dyskinesias"... :) we both laughed.

By hubb On 2010.02.18 10:13
I read the Forum each day but we've been on a yo-yo program lately it seems...just when you have a good day, up comes one that isn't so great and so it goes. Had an swallow evaluation test yesterday but didn't learn a lot new. The speech pathologist did mention of course to drink lots of water and since my PD spouse suffers with thick secretions, suggested making it warm water with honey & dash of lemon juice which would help clear up the phlegm.
The other nine suggestions were ones that most of us already know, even common sense tells you most of them. He also is going to start physical therapy next week but I have my doubts as to whether he can participate too much because his balance is so far off most of the time and he has so very little strength and stamina - but I'm hopeful the PT will help and maybe help me help him. The dr. asked if anyone ever told us what kind of cane he should use or what kind of walker and no one ever has - we just knew when the time came that he needed the assistance of one or the other - so many things about this disease you have to figure out for yourselves - that's why this forum is so important to all of us - we learn from each other. Our family doc said that when neurologists didn't know what else to try, they send them to therapy - that's probably true in our case since he's been diagnosed for 25 years now with the last 2 years bringing all the classic problems of PD - and especially when you're a senior Senior Citizen, your guess is probably better than theirs at this stage of the game. So maybe the reason the forum has been quiet lately is that some of us are leading lives of quiet desperation at times and don't have the time or stamina to vent. But it does feel good when you do!

By mylove On 2010.02.18 14:08

That makes me grin. I came upon my shakydog out in his garage the other day at one of those 'off' times (long story, long day in an even longer week), where he was standing listening to music, as he usually does. I gave him a big hug, since we both needed it, and after a moment he laughed, saying "There must be a big breeze blowing".

I said "Naah, it's just the music playing in your head." So we 'danced'. If he ever quits work we could try out for one of those dancing shows - we sway pretty good! :)

Yeah, life sucks. But we still get some amusement out of it. I'm glad we still can.

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