kaumy2
Member
- Joined
- Jan 22, 2014
- Messages
- 15
- Reason
- Loved one DX
- Diagnosis
- 8/2013
- Country
- US
- State
- WA
- City
- Port Angeles
My wife was diagnosed with ALS in August 2013. She is on a bipap and has small degree of strength in her legs and in her arms, although not enough to be functional or useful. She also has had a ng tube for at least the past 3 months. She was experiencing a fairly rapid decline for about the past 4-5 months until just recently. About 6-7 weeks ago she developed a severe head drop and we started using a neck brace. About 3 weeks ago, we discovered, rather suddenly the muscles that held her head up became quite strong and when sitting on the couch she is able to hold up her head without support and pivoting and turning her head normally for long periods of time. I've also noticed some (although slight) improvement in the strength in both of her arms. She is also able to swallow 2-3 swallows of water at a time and use a straw, which she could not do otherwise several months ago. She took Riluzole for about one year until about 4 months ago when she started to progressively weaken, but we stopped as it did not appear to make much difference at that point. She has not taken any medication or supplements since then. I've been told by her neurologist that sometimes people can experience improvement in symptoms over a period of time. Has anyone had any experience with symptoms improving on their own...particularly seemingly a rather dramatic improve such as being able to hold one's head erect after experiencing severe head drop for at least 3-4 weeks?