hopingforcure

Hi! my name is ray with balbar als in my 3rd year. My wife is having car for pancreac cancer and has had her last treatment last week. I am in a Hospice Home getting very good care but away from my home 100 miles. Im not much for talking because of my hand problems. Bye In Him Ray

Hi to you and thanks for the kind words. I sure miss all my lost PALS and none more than Joel but life, such as it is, goes on at least for now. Take care of yourself.
Barry

UMN examples are Brisk reflexes, babinski sign, clonus, spasicity.. They are the clinical exam part of a ALS dx.

Thank you that is a relief to me to read your words! But, please tell me what is a UMN problem! ??? Motor Neuron? Thanks!

I saw Dr Scott, not Dr Simmons. When I was originally referred to Hershey it was for a second opinion on Myasthenia Gravis, Dr Scott ruled auto-immune disease out and was leaning toward Mitochondrial Myopathy, but when the muscle biopsies were inconclusive, he said he couldn't do anything else for me. I never even thought ALS was on the radar until my GP mentioned it! Thank-you for your genuine concern!

Hi, I am also from PA. My husband has ALS and I am his "caregiver". I'm just reaching out to PA people to get information, support, and friendship!

hi sweetie,did you have a good vacation?
i hope you are rested in mind,body and spirit.
i do miss your posts and our little chats..............i hope you are not too unwell,you are in my thoughts every day and i'm not just saying that.
get in touch when you feel up to it (((hugs)))caroline

Hello, My name is Ray and I am in Casper, Wyo. in a Hospice House. My daughter took me to watch RANGO the movie and it was fun. My wife is in Laramie under cancer care for more 6 weeks. I have ALS BUlbar. In Him Ray

Just left a message for Joel on his page...great minds.
As for me- been having a great summer. attempting to do a few things that ive always wanted to do but was too scared- will most likely be taking care of my PALS fulltime soon. Had a big scare with him on sat. the exhalation tube on his vent came off and no one noticed it and the alarm didnt sound (i wasnt there.) His lips and hands turned blue and he passed out. Luckily they figured it out quick enough. He is ok. It took about an hour or so but he is completely back to normal. Very scarey. Sometimes I forget that he is as fragile as he is... the disease cannot progress anymore with him so now its just having to deal with machines. I hate it.
What have you been up to this summer?

been a super long time... How have you been?

hi sweetie,are you back from vacation? did you have a good time?
missed seeing you around,love you (((hugs)))caroline

Hi! I just had to see who kept liking all my posts! lol. Thanks How are you doing?

I know, I agree. We should probably talk,we could relate much better.. I am glad you and Gwen are going away.. How are the girls? I am looking forward to the get away.. Nothing but relaxing and fun..

Cancun? Nice! Have fun. Gwen & I are going to Tillman Island in Maryland at the end of the month. Our long deserved honeymoon.

Yes, I go to the support group. Although everyone else is so much older, different issues they're dealing with.

found a copy that would let me copy and paste..........put it on the is this als thread where your question is,would be good for others to read.