I just decided to check in and saw this thread. Thanks for thinking of us...I've been bad for not checking in sooner...I apologize!
Just a recap...Jim had surgery 6/25...BIG BIG surgery. They entered in behind his right armpit (4-5 inch incision), had to break his rib and collapse his lung, and pulled that herniation away from his spinal cord without tearing the dural sack or knicking the cord. They then removed the herniated disc and fused that area of the spine.
In the 9 months that we had to fight the
als diagnosis, he went from ambulating with a cane, to crutches, to a wheelchair....
After surgery...we had about 8 weeks of sleeping on the sofas downstairs as our bedroom is upstairs and he couldn't get to it. To do any stairs took the walker with me behind Jim on hands and knees manually lifting each foot onto each tread and then gently pushing up from behind for each stair. It's a tough recovery, but a recovery none-the-less.
NOW...He's able to swing his legs and pull himself up the stairs, he had hand controls put in his truck so that he can drive and is back to work, he's able to shower on his own (I equipped our shower with a bench and a hand shower), and he's in physical therapy 5 days a week (pool therapy Mon, pilates therapy Wed, manual land therapy Fri...then upper body in the gym Tues and Thurs) and is showing small improvements.
He's able to take steps on his own (like a toddler learning to walk) holding the crutches out to the side for balance if he needs them, he's able to turn himself over in bed, the hipflexors are starting to get a little stronger......the good news is that in the pool..the signal is getting from the brain to almost all of the muscles in the legs...it's just that on land, 3 years of muscle atrophy has left the legs too weak to support the weight of the limb...hopefully it'll just take time. We don't know if his drop feet will ever come back though...there is little/no response in the muscles for dorsiflexion. Snow is scary to us though.
He still has those miserable widespread fasciculations, even through his upper body...but other than that...we still have no other symptoms in his upper body and his lower body is starting to show signs of response...so we're pretty darn sure that
als is no longer in the picture.
We have never received an apology from the doctors who diagnosed
als, pushed this disease to other doctors, and delayed our treatment thus putting Jim in a wheelchair because of the further damage to his spinal cord. I don't know if we ever will....and we were told that while you can sue McDonald's for having hot coffee and win...we would have a hard time with a case against the doctors as they are so protected and they managed to nearly run out our statute of limitations with the misdiagnosis being perpetuated through other doctors.
We are doing well though...He is an inspiration to many many people because of his will to fight. Our 13 year old now feels strong enough and just finished Tuesdays with Maury, wrote a paper about living every day with meaning (referencing John Blaze who ran the ironman triathlon in the early stages of his
als diagnosis as a hero for bringing awareness), and is starting to volunteer to help people with spinal cord injuries and disabilities.
I just feel blessed that while it's a long journey for Jim to come back....we appear to have that LONG journey to make.
Now...if this economy and work would come back!
Ok....now to spend some time reading and catching up. You all have never left our thoughts and prayers...we just have been very focused.
Tag0620 
