Old 07-10-2012, 09:16 PM #1 (permalink)
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Question Good days and bad days

From what I understood, this disease can't be heal and what is lost is lost.

However, my mother in law said that somedays, she feels better and her arms muscles seems to work almost as good as a few months ago.

Is this normal?
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Old 07-10-2012, 09:31 PM #2 (permalink)
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Default Re: Good days and bad days

What she is experiencing may have to do with her level of fatigue. She may exert herself for days on end and then rest for a while. Then her perception of renewed strength might fool her into thinking her muscles are better.

And yes, you are correct, what is lost is lost.
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Old 07-10-2012, 09:35 PM #3 (permalink)
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Default Re: Good days and bad days

Hello - From Ottawa too.

Sorry for your Mom-in-law. I was recently diagnosed and am in early stages. I can echo your Mom's comment. Some days I feel great (and yes - almost "normal") and other days not so great. My left side is most affected - one day my hand will ache and the next it's fine - but is getting increasingly thinner and weaker. It's very strange - sometimes I feel pain in my foot and when that eases - pain returns in my calf muscle. The only consistent things for me are hand weakness, rubbery legs and fatigue. I get tired very quickly and nap most days.

I hope this information is helpful and since we are in the same city - if I can be of further assistance, let me know. We're all in this together even if we're experiencing this terrible disease in different ways.
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Old 07-10-2012, 11:51 PM #4 (permalink)
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Default Re: Good days and bad days

Simply from a CALS perspective, I can tell you that my Hubs has the same issues....some days are simply better than others! I realize that this is not real helpful, but I think that this is just the nature of the beast! Hang in there...hugs and lots of prayers being sent your way!

Ruth
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Old 07-11-2012, 06:58 AM #5 (permalink)
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Default Re: Good days and bad days

Same here. Things that I can do in the morning become more difficult by the end of the day. I find that the heat can be quite debilitating as well. Over exertion one day may lead to a need for one or even two days to recover. Tell her to try to save her strength and energy for the things that are most important to her.
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Old 07-11-2012, 07:32 AM #6 (permalink)
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Default Re: Good days and bad days

Level of fatigue is involved in strength and energy.
My PALS is rejeuvenated by spending daytime naps on his bipap.
Also mental stress can fatigue.
Physical strain and exercise can deplete the strength
He uses "noodles" in the pool with one of those net seats..
That's his only form of exercise... an hour twice a week. He
paddles with his arms only. Yes, strength can come and go day by day.
But say you lose the use of your hands or legs.... it doesn't return.
He can hold his head up better when he isn't fatigued.
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Old 07-11-2012, 07:49 AM #7 (permalink)
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Default Re: Good days and bad days

I know it may sound stupid, but we are still hoping of a false-positive. Me and my wife learned about my in-law situation not a week ago.

My wife was already very shaky with life with a burn out ... and now she has been crying the whole week for her mother. The kids are also very affected. I am the only tree left in the family and I am starting to bend.

We are leaving tomorrow morning for a 12 hours trip to go see her ... we have change our vacation time from 1 week to 2 weeks ...

Thanks for all the answers.
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Old 07-11-2012, 08:03 AM #8 (permalink)
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Default Re: Good days and bad days

Like the others have said, strength comes and goes based on a variety of issues. I grieve every time there is a new loss Rog experiences. Hopefully your wife (and all of you) have a professional to talk with. Mine keeps me sane, the one person I can cry in front of who doesn't fall to pieces because I'm crying. I am so sorry you are going through this, enjoy as much of your vacation as you can; please plan some fun things to do while you are there.

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Old 07-12-2012, 04:29 AM #9 (permalink)
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Default Re: Good days and bad days

Attitude plays a big part in the reaction to a diagnosis of whatever physical problem.
At the onset, we have to cry and grieve, but then move on. You can't change anything
by worry, despair, or ranting. I have seen people happy with unbelievable obstacles in
their lives. Think of what you DO have instead of what you have lost. Life is short enough. More important than health is not to have regrets. Make life memorable for those around you.... in a positive way. You can't wait for joy... you have to have joy.
My PALS says that he isn't afraid to die. The angels will sing, the bells will ring, and he'll
go to a better place. I will rejoice that I knew him and he was mine. He'll love me from There. Whatever attitude you display, will spread to those around you. I know it's difficult, but smile through your tears.
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Old 07-12-2012, 08:55 AM #10 (permalink)
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Default Re: Good days and bad days

Oh Marjorie, you are such an inspiration. I love and appreciate your attitude. Jamie m
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Old 07-12-2012, 09:00 AM #11 (permalink)
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Default Re: Good days and bad days

Wow and thank you for this most awesome post. You cut to the chase in the kindest and most tender way ever!
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Old 07-12-2012, 10:56 AM #12 (permalink)
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Default Re: Good days and bad days

Cocacolafun,

Remember that the tree which bends in the wind is far less likely to fall; you may have doubts about your ability to shepherd your family through this storm but the mere fact that you are seeking advice from a very knowledgable bunch of people shows that you are responding well to the challenge.

It is entirely natural to hope that the diagnosis is wrong, and if your mother-in-law wants to believe that then she must be free to do so. None of us has the right to say that she should do otherwise; there are times when sticking one's head in the sand is a good option. This may be one of them...
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Old 07-18-2012, 07:05 PM #13 (permalink)
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Default Re: Good days and bad days

I just return from my trip. She is in good shape and in bad shape ... what I mean is that yes, she lost so much since March ... but she was very happy to see the kids around her ... thanks to all.
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Old 07-18-2012, 10:49 PM #14 (permalink)
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Default Re: Good days and bad days

C'est bon! Good visit - I am happy for you and especially for your mom-in-law to see her grand kids. That, in and of itself, is a great joy.

Cherish every moment and if you ever need anything - you know where we is!
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