Our Journey (so far) with ALS

Status
Not open for further replies.

PRISCILLA

New member
Joined
May 2, 2022
Messages
2
Reason
CALS
Diagnosis
12/2020
Country
RS
State
KZ
City
Margate
My husband and soulmate of 43 years has been diagnosed with ALS. I retired in 2018 and he in 2019 and we moved to our little coastal village in South Africa. Barry has always had back trouble but it was getting worse and he started walking very strangely. I would crack up laughing as I couldn't understand his walking. He went to the local (and only) orthopaedic surgeon who sent him for an MRI. He ended up doing the back op which was a great success.

He had improved remarkably after his op but then started feeling weakness in his legs. I must add that his glutes disappeared which concerned me. We went back to the orthopaedic surgeon for a check up and I asked him about Barry's glutes disappearing. He then referred us to a neurologist in the nearest city to us who in turn referred us to another one who then ran all the tests to eliminate anything with those symptoms. He then said he is going with MND but that Barry is not displaying all the symptoms.

We rushed home and Googled what this was and found that it was the same disease one of our Springbok rugby players died of.

Since that diagnoses 26 months ago, Barry has weakened in his legs and arms. He manages to walk short distances with his walker but is feeling very wobbly.

I have chosen to care for him myself as he is my life. I shower him as he can't raise his arms very high or reach his back. We have asked our health insurance to provide us with equipment i.e. Hospital bed,hoist shower commode and motorised wheelchair. We are just waiting for their answer.

Can anyone give me advise on how fast this disease progresses and what is the life expectancy? He is still eating and talking without a problem so we enjoy our days together.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
869
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
Hi, Priscilla! Very sad to welcome you and your husband here. The sound like a great team and your health insurance comes through with all the right equipment.
Life expectancy varies hugely, my PALS made it 13 month past diagnosis, active members here (more in your husbands age group) are going strong for years with slow progression. If his progression doesn't suddenly speed up, you'll have many more years together. Using a walker is great to avoid falls as this can really create some damage. Getting the electric wheelchair will be great too to preserve energy and functionality. Because the muscles die off quicker when they are overexercised.

If your husband enjoys talking into a computer he could look into voice banking. But if you don't mind a foreign accent and different voice once his own speech is gone you two could just as well enjoy your time together.
 

PRISCILLA

New member
Joined
May 2, 2022
Messages
2
Reason
CALS
Diagnosis
12/2020
Country
RS
State
KZ
City
Margate
Thank you so much for your encouragement. I think his muscle loss has sped up over the last 6 weeks. We are not sure whether this means anything. But yes, we would rather live each day and let tomorrow take care of itself.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,152
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Sorry to welcome you here Priscilla.
Do all you can together while you can, as you may have years more yet, but we can't tell.
Remember, in that time anything could happen to you as well. Treating each day as bonus can help not focus too hard on what is coming, and increase the joy in each day.

Yet as a CALS we are always on alert and watching to see what we need to plan for next and how we can change what we do to help more. I think you have already found some balance in that.

We will walk along with you and help you deal with changes as they come, I hope it stays slow. Progression can speed up and slow down, and can seem to speed up sometimes too. With his legs, muscles have been weakening for a long time, but others compensate for that. A kind of tipping point can be reached and there aren't enough strong muscles left to pick up that compensation and it can seem like function is suddenly lost quickly. All I'm saying is that it may not be speeding up, it may just be that his legs have been weakening for some time.
 

rroblin30

New member
Joined
Apr 26, 2022
Messages
1
Reason
Lost a loved one
Diagnosis
11/2017
Country
US
State
TX
City
Sachse
Hello Priscilla and to everyone else on this thread,

I am glad you have reached out. It will help you to feel you and Barry are not alone as you navigate this horrendous time in your lives.

I just joined this forum last week in hopes of maybe helping others. I lost my amazing husband coming up one year June 10th. Michael was diagnosed in 2017, but prior to that he underwent a neck surgery to hopefully regain the strength he had lost in his left arm. Well, it didn't and after a few specialists, the official diagnosis was given. His upper extremities were affected first, requiring me to ultimately be his arms [showering, feeding, helping with his phone, etc]. His lower extremities declined drastically during the last 6 months of his life. He did have some time in which his symptoms plateaued which we were so grateful for! In the middle of all this, we did so much and tried to stay focused in the moment, as it seems you are also doing.

So glad you're able to get assistance with the medical equipment. That will help tremendously. We did have a bidet installed to help with toileting issues and, since he was no longer able to pull himself up in bed or sit up comfortably when his breathing became compromised, he began to sleep in a recliner.

I hope this helps. I have never contributed to a forum before, so I hope I gave you some helpful advice. I will keep you and Barry in my thoughts

Robin
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Welcome, Robin, with regret for your loss. I am sure Michael would be pleased to have you, as did Tillie, highlight what you were able to do with your lives post-diagnosis, and the importance of cultivating the good moments -- timely advice for Priscilla and other CALS.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,152
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Huge welcome Robyn 🤗💚
 
Status
Not open for further replies.
Top