avnl
Distinguished member
- Joined
- Sep 6, 2011
- Messages
- 162
- Reason
- CALS
- Diagnosis
- 02/2005
- Country
- US
- State
- RI
- City
- warren
M has progressed significantly in the last year. He has given up walking and currently is using his Zinger (our traveling electric wheelchair) in the house. We have an appointment at Spaulding for him to be fitted for a power chair. I have appreciated the recent threads regarding the PWC. Luckily his core strength is such that he is ok in the Zinger.
We have gotten a stairlift to get him to the basement and a lifting recliner. A hoyer is next on the list.
Spasticity is his biggest problem. He has a baclofen pump which is running at maximal levels. He has tried increasing doses of Botox in his left adductor and hamstring. He takes supplemental oral baclofen and is on Gabapentin 3 times a day. He is also trying a tincture of CBD oil. In the past month I have to stretch him about every 3 hours for him to be able to bend at the knee for transfer. Even then after the stretching, I can barely push his feet in for him to be able to stand and transfer. I affectionately call him plank man because he is so stiff.
Last night he had difficulty getting his feet on to the Zinger foot plate. The stretching is wearing me out. He has become my own personal nautilus workout machine. To make matters worse he had surgery on his right rotator cuff and he is losing the ability to use one of his arms to help with transfers. Surgery seems unlikely with no use of the arm for several months. So a hoyer is the next purchase. We have the compassionate ALS coming in 2 weeks to see what they can offer as well. Would that were all. Swallowing and speech are deteriorating.
We are a great team but the past few months have been a challenge for me. Normally I feel so capable and now I am at the limit of my strength. I know you all know the grieving in little pieces that this class of disease causes. I have had 12 years knowing that his disease could, probably would, progress. I thought I was ready. I guess I have no choice but be ready.
We have hired a helper for 2 days out of the week, a financial strain but I have gotten a night of uninterrupted sleep. Despite this, watching M's deterioration has made me so sad. M recognizes this and despite his frustration he is reaching out to me so I have to focus on that and problem solve and make each day be the best it can be. We are lucky to have our wonder dog Kosmo to keep us from losing it all together.
This post is for those of you who I know understand and as a way of thanking all the people who have posted and helped me through times like this when you have responded to others.
We have gotten a stairlift to get him to the basement and a lifting recliner. A hoyer is next on the list.
Spasticity is his biggest problem. He has a baclofen pump which is running at maximal levels. He has tried increasing doses of Botox in his left adductor and hamstring. He takes supplemental oral baclofen and is on Gabapentin 3 times a day. He is also trying a tincture of CBD oil. In the past month I have to stretch him about every 3 hours for him to be able to bend at the knee for transfer. Even then after the stretching, I can barely push his feet in for him to be able to stand and transfer. I affectionately call him plank man because he is so stiff.
Last night he had difficulty getting his feet on to the Zinger foot plate. The stretching is wearing me out. He has become my own personal nautilus workout machine. To make matters worse he had surgery on his right rotator cuff and he is losing the ability to use one of his arms to help with transfers. Surgery seems unlikely with no use of the arm for several months. So a hoyer is the next purchase. We have the compassionate ALS coming in 2 weeks to see what they can offer as well. Would that were all. Swallowing and speech are deteriorating.
We are a great team but the past few months have been a challenge for me. Normally I feel so capable and now I am at the limit of my strength. I know you all know the grieving in little pieces that this class of disease causes. I have had 12 years knowing that his disease could, probably would, progress. I thought I was ready. I guess I have no choice but be ready.
We have hired a helper for 2 days out of the week, a financial strain but I have gotten a night of uninterrupted sleep. Despite this, watching M's deterioration has made me so sad. M recognizes this and despite his frustration he is reaching out to me so I have to focus on that and problem solve and make each day be the best it can be. We are lucky to have our wonder dog Kosmo to keep us from losing it all together.
This post is for those of you who I know understand and as a way of thanking all the people who have posted and helped me through times like this when you have responded to others.
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