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.
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.