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Union jack

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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
 
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Bestfriends14

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Hi UK,

I am sorry that you find yourself here. While I cannot say for sure what she has, the symptoms are troubling no doubt, and I am glad that she is on a wait list to be seen by a neuro ASAP. How very frightening this must be for you and your family.

I hope that the wait is not long and you can get some answers sooner, rather than later. Please keep us posted as to how things go. I will keep my fingers crossed that it is something that can be treated.

Best to you.
 

KarenNWendyn

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ALS would be among the possibilities. But so would be a host of other conditions including vascular disease leading to strokes.

The tongue rolling, and constant mouth motion go against ALS and make me wonder about Parkinson’s disease. If the jerking is felt to be myoclonic jerking, that’s a completely different problem altogether.

I also wonder about dementia. You mention memory has been good? However there are many causes of dementia including long term alcoholism.

She could also have a combination of conditions including severe depression, thyroid disease, vascular disease, and effects of alcoholism. Even the combo would be more common than ALS.

In any case, there is a lot going on here and many comorbidities. It’s hard to sort out and not clear cut. But I wouldn’t immediately assume ALS. The neurologists have their work cut out for them.

I wish you all the best.
 

Union jack

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Thank you so much for you’re quick replies. She surely is a complicated Lady and always has been! I really hope the neurologist is able to give us some clarity, the good news in contrast to all the previous speacailists she has seen is that they intended to take her in and conduct all the tests in one place. Trailing from one clinic and appointment to the next when she is so debilitated has been exhausting for her.

I guess what I was really looking for as much as anything was some ideas about some of the personality changes we have seen, we put it down to the genuine horror of the situation she finds her self in and the ravages of alcohol abuse. In the space of 2 years she has gone from working to laying in a bed in a nursing home. She could care less is she is dirty or smells and says sometimes really inappropriate things. This is a huge change from the women she was. I am a psychiatric nurse and Iam lucky enough to have been able to call in favours and had her assessed by both adult and old psychiatrists who did not feel she was clinically depressed or suffering from dementia. This coupled with the constant assertion from the multitude of specialists she has seen that they cannot find a cause for her decline has led to me “blaming” her and badgering her about trying harder

When we were in the hospital last week I was wheeling her to her appointment and a lady she had worked with for 15 years just 2 years ago walked past. She recognised me and assumed I was with a patient. We talked for 5 mins and I had to point out who Mum was. The shock on her face hit me like brick. How I have I let this happen. How have I let her down so badly?
 

KarenNWendyn

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Re: personality change — I would make sure her docs review all her medications as some can be associated with personality change. Also, make sure her blood oxygen saturation is ok. And make sure they rule out infection — check chest X-ray, urine, etc. It’s always a good idea to look at meds and rule out other systemic processes.

If all else fails, neurocognitive testing can be helpful. Definitely talk to the psychiatrist.

I don’t otherwise have answers for you. Sorry.
 

Union jack

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Thanks Karen, we will see what happens once she is admitted, they intend to do nerve tests yet another mri ( brain this time) and lumbar pucture. She will also see an occupational therapist and pyshiotherapist. We are lucky we are in the uk! Now I need to persuade her to engage with all this, she is kind of done with medics which I really understand!
 
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