Snowman78
Distinguished member
- Joined
- Dec 3, 2013
- Messages
- 158
- Reason
- CALS
- Diagnosis
- 12/2013
- Country
- US
- State
- SC
- City
- Sumter
Over the last 10-15 years dad has faced many health issues such as severe arthrihtis problems, 2 disks removed in the lower back with fusion, carpral tunnel surgery on both wrists, and rotator cuff surgery to name a few. Within the last 3 years or so there have been more issues. He started having a lot of trouble with weakness in his right arm to the point he couldn't crank the car at times. The doctor did xrays and other tests but didn't find much. He finally sent him for some physical therapy to try and build the strength back up. The therapist felt he may have had a stroke and then the doctor and the therapist argued back and forth about it and we got nowhere. Dad hasn't been able to have MRI because of a nerve stimulator in his lower back, but it has since been removed. About two years ago he had to have mitral valve repair open heart surgery which he handled well and recovered. During the recovery process he started to have some problems breathing and being short of breath and was given oxygen to use as needed at home. He then developed problems swallowing and his breathing problems have progressed to the point where he is now on 4 liters of oxygen during the day and 3 liters of oxygen with bipap st at night and has about 50% lung function. His right arm has weakened to the point he can't use it and the left arm is starting to weaken. He also has started having a very hard time trying to stand up. Over the last 2 years he has had many falls but thankfully has not had any serious injury from them. When he would fall he said there was no warning, it just seemed that his legs would just go out and he would start down. We were sent to get a second opinion on his breathing problem and that doctor suggested that he may have a neuromuscular disorder that he saw no reason for his breathing to be the way it was and to see a neurologist. Coincidently we had one scheduled for the next week for a 6 month check up for another problem. When we saw him he was very concerned and said he feared it could be ALS and wanted to get us to the clinic at Duke for furthur testing but he felt like we needed to move fast because of the amount of decline in the 6 months since he saw him last. He went ahead and scheduled him to have the nerve test done with the needles and said we could cancel it if we got in at Duke before it. (Not sure of the offical name of the test) It was going to be a while before they could get us in at Duke because they are backed up. His neurologist did the test yesterday and confirmed his and our fear of ALS and gave us a grim outlook of 3-4 months left based off of how fast this horrible disease is progressing at the moment. Dad has made it clear he does not want any kind of feeding tube or breathing tube but is open to other types of treament if available. While I am sure we having been fighting this enemy for several years without knowing what it was our offical fight with ALS started on 12/3/13, dad is 79! I plan to make everyday as fulfilling as I can for him and push him to do as much as he can while he can. It has been hard on me and mom but we stay strong for him and do all we can to give the best care possible and make him as comfortable as possible. He has been a father to my sister for 40 years, to me for 35 years, and a loving husband for just shy of 50 years. I apologize at the organization of this post, I know it was all over the place but I just needed to get all of these thoughts out.