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avnl

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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.
 

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Avnl, all I can recommend is get that hoyer lift as soon as possible. We were lucky in that our state MND (ALS) society supplied it.
It makes our life so much more bearable. I send you strength for this next stage of your journey. I'm sorry I can't help too much as each of us take such a different pathway.
 
Anna,

Sorry to hear about M's progression. However many years in you are, you can't "be ready" until the day comes. That's a protective mechanism that helps you through those years. Sounds like some good equipment moves; ask us about anything else you care to, of course.

Best,
Laurie
 
I totally agree that you should get that hoyer ASAP.

You will still use a lot of energy and muscle doing the stretching that he will still need, but you can do transfers safely. So important for both of you.

Having a hoyer does not mean it is the only way he can be transferred. We used both hoyer and standing transfers right through. There were some kinds of transfers (into bed was the first) that really did not work without the hoyer, and there were times of the day when the hoyer was safer.

I didn't realise you have been battling ALS this long as your profile does not show the diagnosis. 12 years is beyond my imagining! Rant all you need xxx
 
He has PLS. He initially was dx'd as HSP (hereditary spastic paraparesis). This was changed to PLS when bulbar symptoms began about 2-3 years from onset. Multiple EMGs have not shown lower motor neuron abnormalities. There is no option for caregiver of other diagnosis than ALS/MND.
Anna
 
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oops I meant your profile does not show the diagnosis date ... one little word missed does change the meaning of what I wrote! However I also didn't realise it is PLS. But mostly I was thinking about how long you have been battling this. I can't imagine how tiring it must be with all these recent changes xx
 
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