Kari M
New member
- Joined
- Oct 16, 2008
- Messages
- 6
- Reason
- Loved one DX
- Country
- US
- State
- Missouri
- City
- St. Charles
This is my first time posting on this website. I have been reading all of your questions, comments and observations since my dad was diagnosed with ALS in Sep. 2008. He started off having problems with his right arm in 2007, shortly after a car accident. His hand and forearm were very swollen and he was losing muscle stregnth in his arm and chest. You could see the difference in his arms and chest muscles with his shirt off. At first doctors thought he might have some disc problem in his neck. (In the past he had neck surgeries and disc problems.) The neurosurgeon performed 2 neck surgeries, needless to say the right arm/hand kept getting worse, puzzeling the doctors even more. Then they thought he had carpel tunnel eventhough he wasn't experiencing any pain. So, surgery for that was performed and once again, no change in his hand or arm. Still no change. I live in the St. Louis area and finally convinced my parents to come to a doctor down here. He was diagnosed and then sent to Barnes for a second opinion. The diagnosis was then confirmed. We (my brother and I) asked my dad to be tested for the SOD1 gene mutation since my dad's brother also has ALS and had been living with it for 9 years. The test came back negative for the mutation. The doctors told us that ALS in family cases without the SOD1 gene mutation were less than 1%. My mom is his primary care giver and in September had to quit her job to stay with dad. He can go to the restroom by himself most of the time and can feed himself with assistance when needed, other than that he depends on my mom for everything. We recently got established with a pulmonologist and he expressed that he doesn't want a feeding tube or breathing assistance when the time comes. The doctor brought up a bipap machine and we feel that dad could really benefit from it. He doesn't want to do the testing and doesn't feel that he needs one at this time. (yes he is still smoking) It is hard to watch my parents and what they are going through with this nasty disease. My mom is a trooper and has health problems herself. I offer to come up(I live 2.5 hours away) and clean, sit with dad so she can get out of the house, cook or whatever needs to be done and she says they don't need help yet. She is afraid that if I start coming up dad is going to think he is dying faster. I guess that kind of makes since but this is really exhausting for her. He is needing to use a wheelchair now, not all of the time, but he comments life is easier and less tiring when he does use one. He sleeps quite a bit, is choking more, speech is extremely slow and very slurred, has had 2 bad falls in the past week I understand that all comes with the disease, but that doesn't make it any easier. It seems like things are progressing so fast. Any advise or thoughts about the progression of my dads ALS?