ROXIESB

Thanks Roxie, I'm the oddball who really wants it to begin. I appreciate your prayers--and hope that you're okay. Hugs--Ann

Hi Roxie,

I too am originally from Butler, Pa. I'm now in Colorado. My husband of 39 years was diagnosed with ALS 1/21/09- we're almost at the two years marker. I graduated from Butler High in 1968. I'm so very sorry that this is happening to you now.

I'm glad you have a husband, and one who sounds supportive. Your day is long! You should be eligible for SSDI and Medicare as I understand it, if you've basically worked (paid into the system) for five out of the last 10 years. They are very good with ALS patients. I'm not an expert--I don't qualify.

My two girlfriends from Church get me out of bed with a hoist and sling when my husband, Phil, is at work. They take me to the toilet, then my powerchair. They help me wash hands, brush teeth and wash my face, then pour me a cup of coffee, open whatever I'm having for breakfast, place things where I can reach them. Late morning, return to take me to bathroom. 3 pm, same. Two women do my errands, get anything out to thaw for dinner. Until recently a man from church cooked at least two dinners for us every week for two and a half years. Now Phil wants to do the cooking, so he asked the other fellow to hold off.

You may be surprised in also being offered help. Say "YES".

Hello Roxanne,

Welcome to the forum--I'm glad you found it and hope you find much help as well as fun here (we do often have fun). I appreciate your kind words very much. And, you may know that I'm in diapers and have been since 11/09. I consider myself very "unreliable", but some days are good regarding the trips to the bathroom. Wow, don't you wish you didn't need to eat and drink?

I hope your hands continue for a long, long time. I can do little with mine other than type, which is becoming harder. I find that hard to dwell on, so I don't. I haven't read your profile page--I'm writing using the "conversation" tab below your post to me. I'll be very interested in learning about your work and your situation regarding caregivers, if you have that in place. My own "volunteered" before I needed them, and are an enormous blessing. Also, my husband is allowed to telecommute a day or two each week.

I hope your day is peaceful, and am very glad to have met you!
Ann

Hello, and welcome. So sorry for the reason. If you have any questions on how to use the site, just click on my name, and write a message on my visitor page. HUGS!!!!!