Janders
Member
- Joined
- Mar 4, 2021
- Messages
- 17
- Reason
- CALS
- Diagnosis
- 02/2021
- Country
- US
- State
- NJ
- City
- HOPATCONG
My husband, age 73, had 3 normal EMG's before 4th one raised likelihood of als and second six months later confirmed. My husband was convinced he had CTS before and after ALS diagnosis; and attributed other early weakness and pain to rotator cuff issues, meniscus issues which is what it felt like to him. After ALS diagnosis confirmed in Jan 2021, he has now this year surrendered to the diagnosis of ALS. He was tested for genetics and found to carry a gene that was 95% "probable" in explaining ALS (though in most cases there is no genetic link.) The genetic test actually helped him accept, though of course added complications for our son. It's so tough on patient and family because it is the trend line that confirms the disease vs a single test, and this obviously takes time and is confusing. Our doctor at Columbia stated they often see normal EKG (often multiple) with weakness and twitching, followed by (months later) abnormal EMG and still even more weakness.
The biggest challenges for us are determining the best equipment to introduce (and when) and finding reliable and experienced caregivers (his hands and legs failed first). With the equipment, I have sorted out movement support and am very happy with the equipment we have in place. OT and local 'mobility' companies have been helpful but I have made final decisions due to conflicting input. I had to decide which movement was essential (getting in and out of shower, getting on and off commode, getting outside, and moving from chair to bed) and then solve each challenge independently. Made mistakes and learned. Having this in place is a huge relief. The Gleason group has also been incredible for technical support including advanced wheelchair. Local ALS group and this site also very supportive.
On the emotional front, he is not receptive to counseling. He is initially hard on caregivers (impatient, testy). Sometimes they quit before he settles in. All this has left me continuously searching for care as he cannot be left alone. Our current M-F live in is fantastic from where I sit, and again we have his pattern. I've been harsh -- 'this person is keeping you out of a home...if she quits I am not sure I can find another...'. It feels that way to me after 4 months of a revolving door. Too much?
The biggest challenges for us are determining the best equipment to introduce (and when) and finding reliable and experienced caregivers (his hands and legs failed first). With the equipment, I have sorted out movement support and am very happy with the equipment we have in place. OT and local 'mobility' companies have been helpful but I have made final decisions due to conflicting input. I had to decide which movement was essential (getting in and out of shower, getting on and off commode, getting outside, and moving from chair to bed) and then solve each challenge independently. Made mistakes and learned. Having this in place is a huge relief. The Gleason group has also been incredible for technical support including advanced wheelchair. Local ALS group and this site also very supportive.
On the emotional front, he is not receptive to counseling. He is initially hard on caregivers (impatient, testy). Sometimes they quit before he settles in. All this has left me continuously searching for care as he cannot be left alone. Our current M-F live in is fantastic from where I sit, and again we have his pattern. I've been harsh -- 'this person is keeping you out of a home...if she quits I am not sure I can find another...'. It feels that way to me after 4 months of a revolving door. Too much?