TulipShell
New member
- Joined
- Feb 8, 2019
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 05/2018
- Country
- US
- State
- FLORIDA
- City
- Sanford
Hello. My husband was diagnosed ALS May 24, 2018 at age 43. It all began in April 2017 when he began having difficulty clipping his nails, left hand onset first. From there it was over a year of testing, specialist, etc, which is the only normal thing I guess about this disease; difficult to diagnosis but once you have that diagnosis the symptoms are definitely apparent.
At the May diagnosis he had no use of left hand/arm, balance issues and only mild speech slurring. Fast forward - quite literally it feels like a fast forward - 9 months later to a very different picture: speech is considerably affected, he is in a motorized chair only his right hand having minimal strength, has PBA, breathing at night starting to sound labored and he has lost 40 pounds.
We have done all the obvious things we could think of to adjust the house to challenges. Grab bars installed, shoes without laces, altered pants with Velcro, chair riser for the motorized chair, shower chair, toilet chair, portable urinal and a stair lift should he feel energetic enough to want to visit with family upstairs.
Now we seem to be entering the realm of I don't know what to do now. Anyone who has any suggestions or advice on the following I would be grateful.
1. He says his hand/arm strength is declining and feeding himself is becoming tiring. He said swallowing is not an issue but I'm leaning toward it is time for a feeding tube. Has anyone else inserted feeding tube when swallowing not an issue?
2. Does anyone recommend a cup/straw that is lightweight?
3. I'm now in charge of his grooming. Recommendations for razor, or other grooming tools welcome.
4. Recommendations for anything I haven't thought of yet but should be prepared for are also welcome.
I must admit I was shown this forum a month ago and only just joined after reading some posts these past few weeks. It is difficult to put things out there so plainly but if there is a setting where it would be understood I feel like this it.
I appreciate any suggestions. Best wishes to all on the journey.
At the May diagnosis he had no use of left hand/arm, balance issues and only mild speech slurring. Fast forward - quite literally it feels like a fast forward - 9 months later to a very different picture: speech is considerably affected, he is in a motorized chair only his right hand having minimal strength, has PBA, breathing at night starting to sound labored and he has lost 40 pounds.
We have done all the obvious things we could think of to adjust the house to challenges. Grab bars installed, shoes without laces, altered pants with Velcro, chair riser for the motorized chair, shower chair, toilet chair, portable urinal and a stair lift should he feel energetic enough to want to visit with family upstairs.
Now we seem to be entering the realm of I don't know what to do now. Anyone who has any suggestions or advice on the following I would be grateful.
1. He says his hand/arm strength is declining and feeding himself is becoming tiring. He said swallowing is not an issue but I'm leaning toward it is time for a feeding tube. Has anyone else inserted feeding tube when swallowing not an issue?
2. Does anyone recommend a cup/straw that is lightweight?
3. I'm now in charge of his grooming. Recommendations for razor, or other grooming tools welcome.
4. Recommendations for anything I haven't thought of yet but should be prepared for are also welcome.
I must admit I was shown this forum a month ago and only just joined after reading some posts these past few weeks. It is difficult to put things out there so plainly but if there is a setting where it would be understood I feel like this it.
I appreciate any suggestions. Best wishes to all on the journey.