some background on my husband
Hi again everyone. I thought I would post some background info on my husband and family so everyone can get to know us and our situation a little bit.
My husband's name is Lenny. He was diagnosed on August 7th of this year. His first symptoms started with right hand and wrist weakness in June of 2005. Since he is a carpenter, the Dr. thought he had carpal tunnel and did a surgery in Nov. of 2005. It didn't help at all so he was sent to physical therapy which didn't help either. He had a carpal tunnel revision surgery in July of 2006. During the time between surgeries he saw a neurologist who did numerous EMGs which showed progressive nerve damage and muscle weakness. He had numerous MRIs and CAT scans, tons of blood and urine tests. All negative. Finally the neurologist said he doesn't know what is wrong and wanted him to see a rheumatologist. (don't know if I spelled that correctly)
During this time I had been researching his symptoms, which kept getting worse and had now spread to his right arm and left hand, wrist and arm as well as his shoulders and back. By this time (July 2007) he had lost 30 pounds, all of which was muscle loss. I just knew, but prayed I was wrong that it was ALS. I found an ALS clinic in Chicago and that is where he was finally given a diagnosis. Even though I already "knew", I still felt like I had been hit by a truck when the Dr. said the words. He is now noticing a little bit of weakness in his left leg as well as in his abdominal muscles. No swallowing problems so far, thank God.
Lenny is 52, I will be 51 next month and we have a 14 year old daughter. This is all so hard. He is still working because of an incredible boss who is letting him do whatever he can, but the job will be finished around the end of the year and he will have to go on disability. Our income will plummet and we will have to move as we will not be able to afford our mortgage. Also our house is a bilevel with lots of stairs. Trying to find a place suitable for what is to come is proving to be a challenge. And of course if we have to leave our daughter's school district it will be all the harder on her. On top of it all, I am on disability due to knee and eye problems. (I will NOT miss the stairs in our house!)
I am getting frustrated just trying to deal with the insurance company and trying to find somewhere that has the assistive devices that he can use at this time. The social worker at the hospital as well as the one through ALSA apparently are overworked and take weeks to even return a call!
Thanks for listening everyone. I have lots more to say but this is long enough already!
Linda