Union jack
New member
- Joined
- Nov 18, 2018
- Messages
- 3
- Reason
- CALS
- Country
- Uk
- State
- County durham
- City
- Darlington
Hi, really looking for ideas about what is going on with my mum. It’s along and complicated story so I’ll try to keep it brief!
She’s never been the most healthy of adults. She had a heart attack in her late 40’s, drank too much alcohol and smoked and got little in the way of exercise. She however worked full time and lived independently until 2 years ago when she was 66. She gradually seemed to get weaker and weaker and more kind of slowed down and demotivated. She complained of frequent trips and falls and became anxious about walking outside without support. She kind of became stuck to her sofa, gave up work and stopped attending or taking part in any social or family engagements. She was more and more unsteady on her feet and unable to walk at all unaided and even aided for only really short periods before feeling completely fatigued. Her self care began to really deteriorate.
I was understandably very concerned and began literally dragging her to the GP every week, several things were explored including depression and thyroid problems, at this time they found nothing and more or less blamed alcohol abuse and unhealthy life style choices. Saying muscles were becoming atrophied through lack of use. She continued to deteriorate over the space of 5 mths or so to the point were it was not safe to leave her at home she was falling almost daily, could not make her legs work to go up and down the stairs and was really unable to meet even the most basic needs. She described feeling as though she was telling her feet what to but that the were not listening. We know she was not drinking at this point as had lost the motivation to even do this! She refused to live with me so was admitted to a care facility for a period of assessment and rehab. Whilst here she experienced a thyroid crisis, she was admitted to hospital and very nearly died, we hoped that once her thyroid was stable she would improve and hoped we’d have our answer. In short in the year since then she has become completely bed bound. Has had numerous CTs seen haematologists, gastroenterologists, geriatricians, physiotherapists and orthopaedic surgeons, no one has been able to help.
Over the past 3 months she has lost the use of her right hand, it has curled into a claw and is totally useless. She has consistently complained of twitches and jerks in her legs which keep her awake. Her left hand has began to stiffen and appears to be going the same way as her right. She has began to slur her speech and has lost a significant amount of weight. She rolls her tongue a lot and her lips and mouth seem to be constantly in motion. She has become apathetic and totally disinterested in her family and at times can be quite cruel making inappropriate and hurtful comments to me and her grand children. Even though she is in a 24 nursing facility and has incredible support she refuses to dress or bathe and has not done so for at least 3 mths. She has bounced between 3 orthopaedic surgeons about the hand issue who were at a loss and were very clear it’s not an ortho problem before she was referred to a neurologist.
We saw the neurologist on Friday, within 20 mins the senior Dr was called in, from what I could see they found her reflexes to be very brisk, she seemed to do well on memory questions and could not stand unaided at all.
The outcome was admission to the neurologist ward as soon as a bed is available. The consultant said she didn’t think she had a magic wand but said she thought they could give it a name and help to cope.
My question is do you think this is ALS? Iam terrified that this is what it is, partly because I’ve spent the last two years in varying states of anger and despair at my mums apparent “giving up” and that she didn’t care enough about her grandkids to try harder. Then again it would explain so much and my guess is in a way it would be a relief to her to have the burden of our expectations lifted and at least she would be receiving the appropriate care
She’s never been the most healthy of adults. She had a heart attack in her late 40’s, drank too much alcohol and smoked and got little in the way of exercise. She however worked full time and lived independently until 2 years ago when she was 66. She gradually seemed to get weaker and weaker and more kind of slowed down and demotivated. She complained of frequent trips and falls and became anxious about walking outside without support. She kind of became stuck to her sofa, gave up work and stopped attending or taking part in any social or family engagements. She was more and more unsteady on her feet and unable to walk at all unaided and even aided for only really short periods before feeling completely fatigued. Her self care began to really deteriorate.
I was understandably very concerned and began literally dragging her to the GP every week, several things were explored including depression and thyroid problems, at this time they found nothing and more or less blamed alcohol abuse and unhealthy life style choices. Saying muscles were becoming atrophied through lack of use. She continued to deteriorate over the space of 5 mths or so to the point were it was not safe to leave her at home she was falling almost daily, could not make her legs work to go up and down the stairs and was really unable to meet even the most basic needs. She described feeling as though she was telling her feet what to but that the were not listening. We know she was not drinking at this point as had lost the motivation to even do this! She refused to live with me so was admitted to a care facility for a period of assessment and rehab. Whilst here she experienced a thyroid crisis, she was admitted to hospital and very nearly died, we hoped that once her thyroid was stable she would improve and hoped we’d have our answer. In short in the year since then she has become completely bed bound. Has had numerous CTs seen haematologists, gastroenterologists, geriatricians, physiotherapists and orthopaedic surgeons, no one has been able to help.
Over the past 3 months she has lost the use of her right hand, it has curled into a claw and is totally useless. She has consistently complained of twitches and jerks in her legs which keep her awake. Her left hand has began to stiffen and appears to be going the same way as her right. She has began to slur her speech and has lost a significant amount of weight. She rolls her tongue a lot and her lips and mouth seem to be constantly in motion. She has become apathetic and totally disinterested in her family and at times can be quite cruel making inappropriate and hurtful comments to me and her grand children. Even though she is in a 24 nursing facility and has incredible support she refuses to dress or bathe and has not done so for at least 3 mths. She has bounced between 3 orthopaedic surgeons about the hand issue who were at a loss and were very clear it’s not an ortho problem before she was referred to a neurologist.
We saw the neurologist on Friday, within 20 mins the senior Dr was called in, from what I could see they found her reflexes to be very brisk, she seemed to do well on memory questions and could not stand unaided at all.
The outcome was admission to the neurologist ward as soon as a bed is available. The consultant said she didn’t think she had a magic wand but said she thought they could give it a name and help to cope.
My question is do you think this is ALS? Iam terrified that this is what it is, partly because I’ve spent the last two years in varying states of anger and despair at my mums apparent “giving up” and that she didn’t care enough about her grandkids to try harder. Then again it would explain so much and my guess is in a way it would be a relief to her to have the burden of our expectations lifted and at least she would be receiving the appropriate care
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