catb
New member
- Joined
- Dec 1, 2024
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 10/2024
- Country
- US
- State
- MA
- City
- Mattapoisett
My 77 year old husband was recently diagnosed. His symptoms began last spring; weakness in his legs which which progressed to a few falls early in the summer. In July he fell and broke his ankle. Still we thought once his ankle healed and he received some Physical Therapy for muscle strengthening he would improve. However things continued to deteriorate and he became weaker and more difficulty walking.
Ironically during this time he lost his PCP because his PCP had ALS.....I still can't believe that coincidence. Without a PCP we couldn't get referrals to specialists unless I brought him to an Urgent Care or the ER.
Finally at the end of the summer we found a PCP and then saw a neurologist....after much testing she said she suspected ALS and referred us to the ALS clinic Mass General Boston. He is now totally wheelchair bound, very weak. His symptoms are staring to affect his right arm and his voice seems to be weaker. We are having his voice banked later this month.
So far he can still swallow but they are talking feeding tube placement before his respiratory status declines. My husband and I took care of my parents for 13 years...they lived with us. Dad had Parkinson's and was non ambulatory, total care and Mom developed dementia. After they passed we thought there would be time for us to begin to travel and enjoy life. Bob was planning to retire this year, and I was considering it as well.
I am 71 and currently work 24 hours a week as a Diabetes Educator. I am a Registered Nurse and Registered Dietitian so I have some knowledge in caring for a disabled person but have no one to help so at some point we will have to hire privately. My husband is so depressed understandably and I am as well....but I am also angry....we both worked so hard all of our lives, took care of our families and now I feel our future has been ripped away from us....I'm old enough to know that life isn't fair but I guess on some level I still expect it to be.
Ironically during this time he lost his PCP because his PCP had ALS.....I still can't believe that coincidence. Without a PCP we couldn't get referrals to specialists unless I brought him to an Urgent Care or the ER.
Finally at the end of the summer we found a PCP and then saw a neurologist....after much testing she said she suspected ALS and referred us to the ALS clinic Mass General Boston. He is now totally wheelchair bound, very weak. His symptoms are staring to affect his right arm and his voice seems to be weaker. We are having his voice banked later this month.
So far he can still swallow but they are talking feeding tube placement before his respiratory status declines. My husband and I took care of my parents for 13 years...they lived with us. Dad had Parkinson's and was non ambulatory, total care and Mom developed dementia. After they passed we thought there would be time for us to begin to travel and enjoy life. Bob was planning to retire this year, and I was considering it as well.
I am 71 and currently work 24 hours a week as a Diabetes Educator. I am a Registered Nurse and Registered Dietitian so I have some knowledge in caring for a disabled person but have no one to help so at some point we will have to hire privately. My husband is so depressed understandably and I am as well....but I am also angry....we both worked so hard all of our lives, took care of our families and now I feel our future has been ripped away from us....I'm old enough to know that life isn't fair but I guess on some level I still expect it to be.
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