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Pinkie in the Pink Palace
Posts: 8,453
Reply with quote  #16 
Martine *HulaJustPassing, Chili Beans Martini, you look so cute in those two pix ! Love your hairstyle too, and your people look nice, too. And Ali's . I only got to catch a glimpse of yours, before you deleted them, Michele, I liked them a lot too and it was cool seeing Allan. Are you on Facebook, Michele? OMG I sure would love to "friend" you. I have Ali's there and am looking up Martine's again.
"more sinned against than sinning"--shall be on my tombstone

"Transpersonal psychology--transcend the self, to abolish and avoid pain...what is the self, anyway?"--Pinkie
"Queen of Pain, I'll Always be Queen of Pain" (laughs)with apologies to Sting
"Yes it's over now, drink your big black cow, and get outa here"--Steely Dan
"I'm just a girl, they think I'm some kind of freak"--Gwen Stefani
"You can beat us with wires, you can beat us with chains;
You can make all your rules but you can't outrun the history train...I seen a glorious day"--Paul Simon

Posts: 2,023
Reply with quote  #17 
Hi Susy,

 I sent you a PM. 😉


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Posts: 3,372
Reply with quote  #18 
Martine - as far as ALS goes no one is ever really sure when it starts.  It's a sneaky rotten disease that starts slowly and when you begin to notice something is wrong it's already moving into high gear.
It's different for everyone but for my sister it has been fairly rapid.  We would talk on the phone, she lives about 7 hours away.  She said that she was losing the grip in her right hand.  I told her it was because we are aging.  These things will happen.  But it concerned her and she would mention it often. 
"I can't use a can opener anymore, I can't take the lid off a jar anymore, I can't use a knife to cut vegetables."

Within a short amount of time she said she was having difficulty raising her right arm above waist level.  Of course all along I had been googling the weakness in her arm and hand and the thing that came up consistently was ALS. 
She had been to a doctor and he had incorrectly misdiagnosed her with carpal tunnel syndrome.  That was a disaster.  She had unnecessary surgery.  I asked her not to have the surgery but what do I know.  I'm not a doctor.

In October of that summer (2016) I had no doubt.  I just knew it was ALS.  As it turned out - so did she.   She called me and asked straight out if I had any thoughts on what might be the problem.  I was vague about it and told her I thought it could be a couple of different things.  She insisted I tell her my thoughts.  "I think you have als" I said.
"That's what I think too"  she said.

Then we cried - a lot.

She finally got in to see a doctor at the University of Utah Med. Center who confirmed the diagnosis.  There is no definitive way to do that.  They just go by the symptoms and by observing fasiculations. (a brief, spontaneous contraction affecting a small number of muscle fibers, often causing a flicker of movement under the skin. It can be a symptom of disease of the motor neurons)  This is the nerve endings dying as I understand it.

So you go home and commence to die.  She quickly lost the use of her arms, followed by her legs.  She cannot breathe adequately and has great difficulty swallowing. She has lost the ability to speak.  She could talk quite well in June 2017 but she could not talk by September.  She also suffers now from PBA (look it up).  Her husband is with her and she has a daughter nearby.  Her other daughter flys over from Denver often.  

ALS - an unimaginable hell of a disease.

So from October of 2016 until now this is how it is.    

And God said "let there be light".
Then General Electric pushed him out of the way and the era of Corporate America was born to rule the universe.

Posts: 2,023
Reply with quote  #19 
You've spoken about your sister before, Ali. It's heartbreaking. It's so wrong and unfair and I have no words to offer, just that it sucks. I am so sorry for your sister, and for you, who has to see someone you love so much go through this. What a horrible, horrible disease.

Pseudobulbar affect (PBA), or emotional incontinence, is a type of emotional disturbance characterized by uncontrollable episodes of crying and/or laughing, or other emotional displays. PBAoccurs secondary to a neurologic disorder or brain injury.


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Moondance Tintin Chili Beans Martini
Posts: 1,367
Reply with quote  #20 
I do not know what to say, Ali. How can ALS patients and their loved ones cope with the disease?
There are more ugly, horrible illnesses, but ALS is certainly one of the most horrendous ones. Nobody should ever go through this.

We had one ALS patient, a man. He got worse every every single day. So terribly sad.

There are no words for it.

“Dogs are our link to paradise. They don't know evil or jealousy or discontent. To sit with a dog on a hillside on a glorious afternoon is to be back in Eden, where doing nothing was not boring--it was peace.” Milan Kundera.
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