okiemom
New member
- Joined
- Mar 18, 2009
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- OK
- City
- Wagoner
My husband is 43 and has pretty much been diagnosed with PLS. They are doing a spinal tap as a final step to ruling everything else out, but the neuro is pretty confident that it is PLS. I have a few questions that I was hoping someone could help us with.
1. Fatigue-He has extreme fatigue, even upon waking in the morning. Sometimes it seems like he's sleeping soundly, but still wakes up exhausted. Other nights he doesn't sleep as well. Anyone else have this problem and if so, what has worked, if anything, to combat it? I'm sure the fact he is a PT who is still working full-time as much as possible isn't helping, but I thought I'd ask.
2. Pain-What works for you? He takes Baclofen 2x/day which has really helped reduce his spasticity but his pain hasn't really reduced at all. He has hydrocodone to take when it's just too much and he can stay in bed, but it would be great to find an alternative.
3. Progression-My husband has deteriorated from walking fine in October to needing a 4-pronged cane everyday and a wheelchair/scooter where lots of walking is involved. We think this whole disease started, though, several years ago and the doc does, too. We can now explain things that no one could explain before. Still, he's declined so rapidly in the last few months that I just wanted to see if anyone has experienced this kind of change in symptoms in a disease that is supposed to progress slowly. He's definitely leveled off with as I said before an improvement in spasticity due to the baclofen.
Thanks so much for any help you can give. We're trying to figure out ways to help him be able to do as much as he can, especially since we have 2 boys ages 9 and 13. Thanks again!
1. Fatigue-He has extreme fatigue, even upon waking in the morning. Sometimes it seems like he's sleeping soundly, but still wakes up exhausted. Other nights he doesn't sleep as well. Anyone else have this problem and if so, what has worked, if anything, to combat it? I'm sure the fact he is a PT who is still working full-time as much as possible isn't helping, but I thought I'd ask.
2. Pain-What works for you? He takes Baclofen 2x/day which has really helped reduce his spasticity but his pain hasn't really reduced at all. He has hydrocodone to take when it's just too much and he can stay in bed, but it would be great to find an alternative.
3. Progression-My husband has deteriorated from walking fine in October to needing a 4-pronged cane everyday and a wheelchair/scooter where lots of walking is involved. We think this whole disease started, though, several years ago and the doc does, too. We can now explain things that no one could explain before. Still, he's declined so rapidly in the last few months that I just wanted to see if anyone has experienced this kind of change in symptoms in a disease that is supposed to progress slowly. He's definitely leveled off with as I said before an improvement in spasticity due to the baclofen.
Thanks so much for any help you can give. We're trying to figure out ways to help him be able to do as much as he can, especially since we have 2 boys ages 9 and 13. Thanks again!