Recently diagnosed

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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.
 
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I am so sorry to welcome you. I am glad you are at mgh Have you connected with CCALS yet?

There is nothing fair about ALS that is certain. You probably have a better understanding of what is coming than average but that is no blessing
 
I too am sorry to welcome you to the forum. I understand; it’s one thing to know that life isn’t fair but another entirely to be smacked in the head with that reality. I hope this group will bring you some peace and at least a place to vent.
 
I'm very sorry, Cat, and of course, we'll support you however we can. Unfortunately, the scenario of ALS popping up just when things seem to have settled seems a very common one, with which I am familiar myself.

Let us know how we can help.
 
Ditto. My husband diagnosed in October. Was going to retire this year, finally time for us. I had a job that I loved. Had to quit. So did he; but he wanted to retire while we were able have some fun.
Disease progression over the last 4 weeks has been hard to handle. I don't have home care, it is just me. Same sentiment about the unfairness of it all. Not that I expect things to always go our way, but it seems I have had a lion's share of escorting my family members out of the earthly realm (brother , father, mother). I am the last one left in my original family. Now I get the privilege of doing it for my husband. Which I am 100% glad I'm strong enough right now to do. I love him so much, he is a good guy. But the sorrow overwhelms. My heart to you.
 
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