I do know that. We'll go camping a time or two this summer. Brad is souping up a manual wheelchair for it! We just need to get a potty chair and we're good to go! I'll talk to you when we get back. Thanks for your friendship!
Hi there! Actually you should be automatically approved due to ALS. My SSD Rep didn't know that either. Call them back and tell them that. It's a law that an ALS diagnosis is automatic approval unless you are already receiving SS payments anyway. You should be approved for A and B. To receive D you have to be below a certain monthly income.
I tried to go to lunch with a friend today but my legs are too weak to break quickly so I turned around and came home! My driving days are over. Fooie.
Well I was born in Kansas City Mo and raised in Spfld - I got married when I was 39 after I got everyone married and out at least for the first time, don and I have been married 25 yr this month, when we married he had 3 grown children and had been diagnosed with Charcot Marie Tooth disease which is we found runs in his family so we decided on no children I worked for the st of IL for 30 yr and retired early I worked teaching fire and police department staff on keeping pension records, etc. updated and accurate I loved it, but the St of IL as elsewhere was going to change benefits so I retired before thay did - at 55 and am so glad I did the first thing I did was save and 2 yrs later I putin an aboveground pool which is my go to place I float and sing all by myself most of the summers Nell
I just noticed you responded to me on your profile. I need to read The Hunger Games. They sound good! We live in Loveland, the Land of Love I call it here. It's right on the edge of the mountains to the West and the Plaines to the East. We're at elev. 5,002 so not that high. Rocky Mountain National Park is about 30 minutes from our house. We love it here! I'm originally from Michigan, moved to the Dallas/Ft. Worth area in '78, met my husband in '96, we married in '98 and moved to Colorado in '02. I worked as an Admin at a CPA firm until last Dec. 1st. That's me in a nutshell! How about you. Any kids? How long married to your hub?
Sorry had to check on husband -just got home from dr. i guess we are going in on wed to find if he has to have a bypass or not I read the hunger games - 3 book series not bad I also have a box load of old gene stratton porter that I want to reread before they go turn of the century stories of nature and growing up in a wetland in Indiana Where at in Colorado I live in the land of Lincoln
I read a book recently that Notme wrote that was good. It's called "Linked" by Hope Walsh. "Now You Know" and "Senti Renato" are good reads. I can't remember the author's at the moment but can get them for you if you'd like. "The Lucky One" was a decent read but I don't want to see the movie. I have a bunch that I haven't read yet. How about you?
I'm in the Phase III Clinical Trial for the drug Ceftriaxone. It's an antibiotic (Rocefin) currently approved by the FDA for IV use with bacterial infections for up to six weeks. The trial is to find out if it can help ALS with long term use. I'll be on it for a year in August and can continue on the drug till the Trial ends this December. Because the side-effects are not clear for long term use, the trial participants are monitored on a monthly basis...blood and urine samples, ALS Functional Rating Scale. We also have our breathing and strength tested, gall bladder scans periodically. My Clinic Doc is the Trial Doc as well, so he does a brief exam as well. My CT Coordinator is an exceptional young woman and has been a real blessing and support. I don't know what I'd do without the forums or my books. I see a Kindle in my future too. Grieve for your losses, but try to do it quickly, adapt and move on. Take care!
Thanks Ladyinn I appreciate yr note I'm encouraged that I may keep movement in my hands for a while, its hard to hold anything very long and I live for my Kindle and computer. Its not that I think of being a lump in a corner, its that everything is going so fast, obviously faster than I can think. Unfortunately my husband does not understand, wont believe I have ALS and is not encouraging me to stay on line and talk to others thanks Nell
I started out like you with my upper body and the use of my arms. I also had use of my hands even though my arms did not work. I took to reading with a Kindle and spend a lot of time on the computer -- right here where I met wonderful people and learned a lot about the disease from real life and not book. I now have laws my diaphragm lower muscles which is causing some problems. I am in a power chair and need assistance eating dressing etc. but you know what I thought that I would just be a lump in the corner of the room but instead I am enjoying things that I never even thought about in the past. I have her friend who is helping me scan family album pictures and turn them in to a story as I dictate. We have such fun and laugh a lot. Eventually, you adapt. With each loss there are bad days until you figure out the best way to handle what is no longer working. I hope you find the same. And that you return and ask questions or just rant and rave that's okay too.
I am sorry to hear of your diagnosis. Although your husband may not be physically able to help you as time goes on, I am sure he will emotionally. The support of this site has helped us in so many ways, we are learning so much about this disease in the short time we have been here. I hope you find the same. I wish you the best.