The darn hand that disengages from my brain at the worst times.

[LifeEnthusiast]

I have a claw right hand. Thumb is going. Extensor is shot but flexor is still relatively reliable.

Yet, every so often -- and ironically this started at least two years prior to any outward symptoms -- my brain and hand disconnect. So whatever, I'm holding just drops to the floor. No warning. Just boom!

In this case tonight, while visiting a friend, an expensive glass of red wine in an expensive glass, of course, dropped to the fireplace surround and shattered and stained anything and everything within proximity..

So damn embarrassing. And no I hadn't had a few. It was the first glass. Ughh. The tripping, slow walking, stair struggle, etc, I have sorted of gotten used to as much as one can. But this darn thing is so unpredictable. And, of course, it's my dominant hand. Perhaps, I should really be thinking twice before I hold something hot as well.

I'm really wondering if this was my first symptom, but one that was so random that it never raised any eyeballs. Just a thought. Perhaps this might be better posted under rants.

Thanks for listening. No one else really gets it. While I enjoy people saying as we sit around a table "but you look great", it reminds me that they have no concept as to what lies ahead. And they have absolutely no concept of the enormous effort I have to put in to each day and the situations I avoid just to appear somewhat normal.They don't see me crawling my hands up my legs just to get off the floor. When the arms go, it will just be me kissing the pavement. I feel better getting that off my chest. Thanks for indulging me.

 

[LifeEnthusiast]

Forgot to add that the replacement glass of wine was brought to me in a plastic cup with a lid and a straw. I was mortified but laughed as I always do.

 

[BlueandGold]

So sorry you had to experience that. I know I should be used to it by now but these stories of others reactions to us both breaks my heart and burns my A$$ at the same time. Seriously, a plastic cup with a lid and straw? Might as well ship us all off to a deserted island and form an ALS Colony.

 

[Nuts]

Sometimes I just don't know what to say, except that I do know the effort put into looking normal and the pain of watching my PALS body betray him. As far as I'm concerned, you can post this anywhere you want. I am glad that you got that replacement glass and hope you were able to enjoy it a little. Yes, be careful about hot things.

I've seen wine glasses that are like Tervis Tumblers (maybe even made by the same company). Yes, they are plastic and have a lid and straw, but at least they have a stem! Maybe we could get some made with ALS Suks as the design...

 

[affected]

Oh

I'm almost speechless.

OK they didn't throw you out, and they did give you more wine... Still did you need a straw, and could they have just given you wine in a less expensive vehicle one has to ask inside their own head?

I know that people's intentions are good, but ... What really impressed me was that you could laugh on the outside and drink your wine.

I just love the idea of a range of adaptive stuff with ALS SUCKS plastered on it. Really throws it out there doesn't it!

 

[Gembead]

We have some acrylic wine glasses, I have also just purchased some double walled coffee mugs with out handles as BJ hands are starting to cramp a lot and some days he finds the handles on his mug difficult to hold, I also have a travel mug he can use as well. At least this way it dosnt stand out ...ALS is a bugger
Love and hugs
Gem

 

[Mike in Maine]

I've had the same problem and it showed up a while before some of the other symptoms expect maybe the tightness. I just try to take into consideration when handing stuff, use a lot of unbreakable stuff and there are a bunch of aids if you look online that can really help out
Mike

 

[Mike in Maine]

Just one more thought, have you seen an OT. Your doctor should be able to refer you, if your prior military the VA will set you up to see one.

Mike

 

[chally]

my right hand is also cramped and curled and to use it is to invite disaster but i don't give a sh$t, i go balls to the wall and if any one around is embarrassed they can kiss my a$$. yea i get the same "you look great" what do these poor people know they are not in this nightmare so i just smile and say "yea" later chally

 

[MaxEidswick]

>an expensive glass of red wine in an expensive glass

cheap wine & plastic for me :-( and Sandy holds that! sipping days over.

IIWII ("It Is What It Is!") ...



Max - Saturday, July 11, 2015 8:57:06 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[LifeEnthusiast]

Thanks everyone. I felt better immediately getting that off my chest. Outwardly, I am trying to laugh everything off, as the alternative seems too grim. But geez, the dramatic over reaction the host had. Her kitchen has glass cupboards and I could see many alternative options to pour the wine in. The holder she gave me as a replacement was nothing more than a step-up on a baby's sippy cup.

Why on earth anyway do hosts give guests drinks in glasses that cost a fortune? And, of course, they tell you the price after there is a mishap. Me? I'm all for cheap Ikea wine glasses. When people would visit my former home, I expected the odd breakage. Who cares in the big scheme of life, right?

Anyway, what's done is done. I'd better get used to it.

I'm still waiting for the third opinion at the Sunnybrook ALS clinic but in my heart I know I'll get the same diagnosis. I can really feel a decline in the past few weeks. I think, in part, the constant shifting hotels, cottage etc. is contributing. I'm not resting enough and I am straining muscles trying to drag luggage here and there.

And Mike, yah when I can get in a clinic I'll talk to an OT. Unfortunately, I was diagnosed abroad where there is no ALS clinic or support. They just gave me a few bottles of Centrium and said come back in a few months so "we can see how much you've declined because that's all we can do for you."

Affected, I think you have a great idea. An adaptive line of products designed specifically for anyone with a motor neuron disease would be great. And I am sure others with diseases that similarly disable could benefit as well. Company could be called, as you mentioned, ALS Sucks and a percentage of the sales could go to research.

I know I have left a number of people out. But thank you ALL for your comments and support.

Take care. Cee

 

[tripete]

Here is a question, why only one glass of wine? You should always insist on two,one for each hand,that way if one breaks you have a backup and can keep drinking. You have ALS let them clean up the dammn message.

My hands are getting very bad,trying to play all the Xbox football I can while I am able.

I am sorry you had to go through this, we should try and enjoy what is left.

 

[Green Queen]

Cee, wow. I think that was a moment we all 'get'. The 'look great' one really does my head in. Half my face doesn't work properly, I've put on heaps of weight, I NEVER brush my hair...but yes, looking great I think is just because people don't really know what else to say, plus if anyone said I'd put on weight I'd probably whack them with my walking stick.
These days, when people ask me how I am, I always reply: do you want the real truth, or just a general answer? Everyone says the truth, of course! I would love someone to say Nah, don't tell me, it's all good. At least I'd know they were being honest!
Is everyone struggling with their dominant hand? That's the WORST...'just use your other hand,' I wonder if my 'other hand' could punch someone?
We all kind of laugh all this stuff off...but this thread alone goes to show that it's quite possibly the little things are the worst things...
My granny lived until she was 94. That's 51 more years if I match her. 51 years of dropping things, claw hand, this damned AFO, everything. Will I still 'look great' then I wonder?

All I know is, the one good thing to come from this, is meeting all you dear people.
God bless, Janelle x

 

[nebrhahe53]

> Seriously, a plastic cup with a lid and straw? Might as well ship us all off to a deserted island and form an ALS Colony.

That co;ony wouldnt last very long. come back 2 years later itll be deserted again.

 

[LifeEnthusiast]

For such a typically private person, I'm amazed how much I can, and do, open up here. In such a relatively short time I have undoubtedly come to the point that I depend on all of you and a highlight of my day is interacting with all of you. What a true blessing. Tripete: love the attitude. Next time I'll say just say "Oops. Get over it. Pour me another while I can actually still drink it." Green Queen, you're spot on. And, yah, why does this seem to affect most people's dominant hands. Reading past posts, it seems to always be the case. And Nebrahahe53: Oh what a sick, but true, sense of humour. I love it.

But I must say after reading the of posts of late, including mine, if I won the lottery, I think I would find away to fund an ALS home for those who don't have family and friends, with a hospice-care side for CALS relief. Imagine all of us vagabonds together at varying stages living life while we are alive. No explanations. Full stop.

Will be buying my lotto tickets religiously from now on.

Thanks everyone! You are all stellar.