Thank you

[Senegal]

Hello HandInHand,

I'm still learning how to send a message to and individual and not to all... bear with me. I'm not sure if this message will be sent/received correctly.
My onset was in my hands, then arms, now some loss of breathing strength. Seems to be moving quite fast to me...but, after the initial shock I'm taking it day by day...

 

[handinhand]

Hi, I have been gone for two weeks. Rich and I went to Yellowstone. Just a nice quiet time together. I was diagnosed in Feb. this year. I am still having those moments, I call them, I just can't believe I have this . Mine started with my speech. It is getting much worse. I found on this trip that I can't even eat an ice cream cone . Something wrong with my lips when I try to lick the cone. Through half of it away. Things keep popping up ,new things. I was eatting a choc candy bar today and the choc was all over my mouth. Just crazy. I would need to wipe my mouth every time I took a bite. This month has been the month of twitching? They keep popping up everywhere. My Doc said that it is progressing slow. Sure doesn't seem that way to me... I do try and be happy every day... I try and do things that make me feel good .. I try and keep doing all the things I normally do. I do get real tired around two in the afternoon though. So I do most everything before then. KEEP IN TOUCH AND LET ME KNOW HOW YOU ARE DOING? hUGS, lINDA

 

[MtPockets]

Making Good Memories

I love to read where our friends here on the Forum are traveling and making good memories. If you have a digital video camera it is also a good time to record things for later viewing.
My voice is getting weaker and I have come up with a plan to make videos to each of my children telling them how much they have meant to me in my life and how proud I am of them. I will save these to be given out to them at my funeral.
I also recommend the movie "The Bucket List". It is a good idea to make a list of all the things you want to do while you still can,. and go do them. Making good memories is never a bad idea and it gets the mind off all the negative things.

 

[Tich1]

Italy Jennifer , how beautiful it is there , I can relate to having to sit and watch others eat and not be able to even converse , oh , and gosh , do you find yourself salivating like Pavlovs Dog !
Welcome back honey xxx

 

[Zaphoon]

Slow Progression My Eye

I've said this before but it bares being said again (from my perspective anyway...).

Any rate of progression, be it slow, medium, fast or ridiculously rapid is not good.

I haven't had any voice issues for a while until today. It started getting weak on me again and this probably ties in with the choking/coughing fits that suddenly come on me at night.

Don't get me wrong! I'd rather progress slowly over rapidly any day but it would be a heck of a lot better not to progress at all!

Zaphoon

Wyatt says hello to everyone! He is studying to be a medical research genius!