AdT
New member
- Joined
- May 29, 2019
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 12/2017
- Country
- NZ
- State
- NZ
- City
- Auckland NZ
Mom was diagnosed with MND (primary lateral sclerosis type with progressive spastic quadriparesis and pseudobulbar palsy) about 2 and a half years ago. She is now in a rest home (since the beginning of the year), she is in an electric wheelchair and needs help with all personal care, she can communicate by writing (not keen on technology/ iPad apps). We thought she was adjusting ok to the rest home but I think the lockdown had a negative effect. Communicating with her was harder (Skype) and I think they had more limited resources, less staff and physio didn’t see her for a while.
She was having a lot of leg spasms at night and had trouble sleeping some nights. She was on Baclofen 10mg x twice a day. A week ago the spasms became really painful, she was in pain the whole night and didn’t sleep at all. I was really angry with the rest home, that first night they apparently couldn’t give her anything stronger for the pain then what was charted by the doctor, which was paracetamol! We also found out the doctor is not on call at night and even the next night when she was in agony again, they had charted codeine for her which wasn’t enough, at 5am they called an ambulance because mom insisted, since they couldn’t give her anything to help. To make a long story short, eventually we got hospice involved and their GP was much more helpful and responsive, she was given morphine and midazolam and a higher dose of Baclofen (45mg per day). She still gets some sharp pain when she has the leg spasms but it’s become more bearable with all the medications.
The problem remains that her legs are bent at 90 degrees (sometimes worse) at the knees and she can’t staighten them. The rest home physio finally came to see her a week later and massaged her legs which seemed to help a bit, but she didn’t attempt to try to straighten them as she was still in pain. I have arranged for another physio (private) to see her next week, I think they need to do something to relax and straighten her legs. I feel like it’s become a vicious cycle, her legs in this position, especially at night, it probably adds to the tension and spasms and cramps. I tried myself very gently to massage and straighten the leg very very slowly, one at a time, but only managed about 5 degrees or so, and at the next spasm they bunch up again.
Has anyone had this and what was the most helpful? Is this a normal thing that can happen as the disease progresses, her legs remaining bent like that?
Any thoughts or feedback appreciated, I hope everyone is coping ok with this terrible disease in the middle of a worldwide pandemic.
She was having a lot of leg spasms at night and had trouble sleeping some nights. She was on Baclofen 10mg x twice a day. A week ago the spasms became really painful, she was in pain the whole night and didn’t sleep at all. I was really angry with the rest home, that first night they apparently couldn’t give her anything stronger for the pain then what was charted by the doctor, which was paracetamol! We also found out the doctor is not on call at night and even the next night when she was in agony again, they had charted codeine for her which wasn’t enough, at 5am they called an ambulance because mom insisted, since they couldn’t give her anything to help. To make a long story short, eventually we got hospice involved and their GP was much more helpful and responsive, she was given morphine and midazolam and a higher dose of Baclofen (45mg per day). She still gets some sharp pain when she has the leg spasms but it’s become more bearable with all the medications.
The problem remains that her legs are bent at 90 degrees (sometimes worse) at the knees and she can’t staighten them. The rest home physio finally came to see her a week later and massaged her legs which seemed to help a bit, but she didn’t attempt to try to straighten them as she was still in pain. I have arranged for another physio (private) to see her next week, I think they need to do something to relax and straighten her legs. I feel like it’s become a vicious cycle, her legs in this position, especially at night, it probably adds to the tension and spasms and cramps. I tried myself very gently to massage and straighten the leg very very slowly, one at a time, but only managed about 5 degrees or so, and at the next spasm they bunch up again.
Has anyone had this and what was the most helpful? Is this a normal thing that can happen as the disease progresses, her legs remaining bent like that?
Any thoughts or feedback appreciated, I hope everyone is coping ok with this terrible disease in the middle of a worldwide pandemic.