Old 02-23-2018, 05:29 PM #1
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Default well this is silly but...

...im probably not the only one whose done this.

March 5th will be the one year anniversary since my diagnosis. I had a clinic visit today. I said to my doctor "it's been one year, and I'm still doing fairly well, are you sure it's ALS?" And then she told me yes, it's definitely ALS, and she said she sees me as progressing at a medium rate...not fast, but not super slow either. She said my progression to date was fairly typical of what she sees with a lot of her patients. I've always told myself "at least I'm progressing slowly" but it sounds like my idea of 'slow' turns out to be more like 'average.'

It's silly that I even asked. But sometimes I still feel she's going to tell me some visit that it's all been a terrible mistake.
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Old 02-23-2018, 05:59 PM #2
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Default Re: well this is silly but...

Very understandable. I have done similar and you know I am FALS.
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Old 02-23-2018, 06:00 PM #3
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Default Re: well this is silly but...

I think we all do this in some shape or form, both PALS and CALS
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Old 02-23-2018, 08:11 PM #4
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Default Re: well this is silly but...

You could be writing just what I have been thinking, and thank you for bringing up this subject. Diagnosed in October, 2017, I still have difficulty believing that three neurologists and dozens of tests say that I have this disease.

Since the "official" diagnosis, I have gone through aspirational pneumonia and continue to weaken overall. But on my "good" days, I keep thinking that all of these things must be wrong! I just don't know what to expect will happen, might happen, or when anything will happen. It's almost as though I am challenging my body to show me that I do have this!

I feel horrible thinking like this, and truly I try to appreciate the things that I can still enjoy and still do. So many others are suffering so terribly and I am almost ashamed because this does not seem real to me yet.

But I will hold good thoughts for all of us, no matter in what stage we find ourselves. And I think of everyone involved in this hideous disease every day, and hope it will be a "good" day for everyone.

No, you were not silly to bring this up. Best of life to you.
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Old 02-23-2018, 08:29 PM #5
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Default Re: well this is silly but...

I also had a clinic visit today and asked the same question and got the same answer, “yes ALS”. It all feels like a weird dream. I could rationalize that I got foot drops for some other reason and then just got horribly out of shape. Must be a common thing with PALS.

I think many of us have a preconceived vision in our heads of what ALS looks like, and when we ourselves don’t quite fit that vision, it’s a weird stretch to go from how we are now to what we see in that vision. When parts of the body still work normally, it gives us hope that there must be some other explanation.
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Old 02-23-2018, 08:57 PM #6
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Default Re: well this is silly but...

Yes, I think my vision of ALS in my head is of being completely paralyzed, unable to speak at all etc. And I find myself thinking "it's been a year, and while yes a lot has changed, im still not paralyzed so maybe im going to be ok?" It's very strange, and also I find myself grieving all over again hearing her tell me she is sure about my ALS.
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Old 02-24-2018, 12:09 PM #7
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Default Re: well this is silly but...

I wonder too if the whole thing of 'failing not feeling' plays a part.

So often Chris would just go to do things because he never 'felt' weak, he never 'felt' any different, and so it would almost surprise him over and over that his body would simply fail him.
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Old 02-24-2018, 12:34 PM #8
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Default Re: well this is silly but...

Yes Tillie, failing but not feeling is definitely part of it. I don’t generally feel ill; I just can’t do certain things.
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Old 02-24-2018, 12:35 PM #9
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Default Re: well this is silly but...

I questioned in the first year too with Brian. I think it got super real for me when he went on the walker and then again when he could no longer do stairs.

It’s a bizarre and rare condition. Not sure I will ever believe it.
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Old 02-24-2018, 12:36 PM #10
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Default Re: well this is silly but...

I still test myself to see if I really can’t do certain things. It just seems so ridiculous.
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Old 02-24-2018, 01:13 PM #11
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Default Re: well this is silly but...

Quote:
Originally Posted by Nikki J View Post
I still test myself to see if I really can’t do certain things. It just seems so ridiculous.

I was diagnosed Nov 2017.

People see me sitting and thing nothing is wrong until I fight to stand and walk with walker. I still have to remind myself I can't walk before I stand!

We quickly prepared for the inevitable, Ramp out front porch, wheelchair lift up split level to bedroom, remodel ADA bathroom!

I still hope diagnosis is wrong... but!

Hoyer lift etc!
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Old 02-24-2018, 01:34 PM #12
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Default Re: well this is silly but...

yes, the failing not feeling definitely messes with your head. I haven't been able to pick up my 38 lb son for a long time now (at least 6 months). But probably once a month I still try because I remember so clearly picking him up with ease before, and I feel like I could, like maybe I just need to go for it. So every so often he needs help reaching the sink or getting into the swing outside or whatever, and my husband isn't nearby and I think "surely I can do this if I really make the effort" but of course it never works. Heck, I can't even pick up a half-gallon of milk from the fridge, why on earth would I think I can lift my child? But it really feels like I should be able to.
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Old 02-24-2018, 03:44 PM #13
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Default Re: well this is silly but...

Oh yes, you should so be able to pick up your kid! This is messed up. Hope you hang in there.

I sometimes doubt myself, because I never doubted my friend's diagnose. When it was "suspected MND" the 16 ton weight came down. A doctor friend tried to console me with the "suspected" and it worked a little, because I wanted it to. Already four days later my PALS got the second opinion by a distinguished expert and it was already a relief somehow, to be rid of the doubt and be able to tackle the thing. He has fALS, so I guess that plays a big role in accepting it. All the puzzle pieces fit and nothing he has expierienced since made me doubt it. There is no hope, but there is no struggle either. I'll take it.

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Old 02-24-2018, 05:27 PM #14
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Default Re: well this is silly but...

Remembering the things that were simple and now difficult is the worst!

Like being able to rub oil and give a backrub to wife! We have to be creative to continue intimacy.

The new normal is a "B%%ch"!
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Old 02-24-2018, 06:02 PM #15
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Default Re: well this is silly but...

Nikki,

I'm so glad to hear someone else tests themselves. I can't seem to stop doing it. Last year I bought professional pulmonary function testing equipment so I can test my breathing and breathing muscle strength at home. On one hand, I'll never need another PFT. I've had to make myself stop doing it so often. I showed the equipment to my RT and he said it was a lot better than the equipment he uses to test patients. He even tested himself (he is a C-pap user).

I also had a grip strength tester that I bought when I played golf. I still use it to test my grip strength.

Last week I did a deep knee bend and hurt my right knee
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