FIL 71 currently taking seminet to calm Dystonia. This seems to have helped and we are seeing improvement after inital exaggeration of symptoms at first.
My FIL talks of a constant buzzing and tingling in his head and face and a stiffness in the neck. In the last few weeks I have noticed a much more slurred speech and coughing and slurping when drinking and eating. He also talks of a crushing feeling in the head. He seems very tense physically.
He is still mobile although is unsteady on his feet. Still coping with everyday tasks preparing easy meals and washing of pots.
How is he doing what are your thoughts?
He lives mainly alone but his ex wife comes to stay a few nights a week sleeping on the settee. It's not the greatest set up but we are managing with me doing as many visits as he requires to feel safe. Including late nights through the week when I'm working full time.
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Pooches
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Hi Pooches, how is his cognition? Even if slowed, is he clear about who and where he is? Does his memory work? Can he count? Would he recognize a crisis like a fire? Can he use the phone?
Even with loss of physical ability a person can work within accommodated circumstances to stay safe, fed, toileted, clean and warm. If cognition is also going, its a whole orher challenge...
Yes thank fully he can still remember. Use his phone and find his way around a computer. I think at the moment it seems to be his body that is letting him down. I am watching closely i would say the other day there were signs of him getting confused when deviding up so food he had brought which made him agitated. So small signs but so far still able. Xx
I remember my husband beginning to lose his numeracy/counting skill, 4 years or so before he passed away, and he eventually list 90% of his speech - but he never developed all out 'dementia'. He/we were able to cope physically, with home support aides in our home until he passed.
The slurred speech, coughing more may an indication of a slight downward step. Dad never really experienced the tingling etc you mentioned but his neck became VERY stiff, eventually the chin was on his chest most the time. If he is becoming unsteady I hate to say but it may not be safe for him to have unsupervised movement about the home. It only takes one bad fall to be catastrophic, for anyone....
I hear you on that. Unfortunately I have one very stubborn bugger on my hands. It will be a case of strapping him down before he gives in. But I will continue to watch him carefully. X
In the early days of dads cbd I was able to have them fitted with first responder alarms one for mum and dad which when activated emergency would notify my husband and I I suggested looking into it, in nz the cost is about 20 a month
I think you are doing exacactly the right thing. This disease takes away so much, so quickly, that giving him the ability, to live his life as he wants for as long as possible is wonderful. Sometimes physical safety is not as important as how someone wants to preserve what they feel is their quality of life.
Ask your doctor if this would be an option for him. A neck brace, the type that you would wear if you were to experience whiplash. My husband finds relief when he puts on a neck brace to ease the unbearable pain in his neck and shoulders. I guess the brace stretches out the neck area somehow and he gets instant relief. It helps, but the doctor limits the amount of time that he can wear it. No more than an hour or two per day. The limitation is to avoid muscle atrophy. Please don’t try this without consulting your doctor first. Everyone reacts differently.
Has he had his ears checked? Wax build up can cause buzzing. One thing I have learnt to my cost is that it's tempting to put everything down to PSP but sometimes it's not PSP at all.
Mum finds a warm wheat pillow helps with her stiff neck but she doesn't suffer terribly from this. You can also get stick on heat patches.
Sounds like he should see the SALT team (speech & language), they can advise on exercises to help with speech, assess his swallow and decide if thicken beverages would be a help.
If you haven't already definitely get a personal emergency alarm for him - they come from the basic press a button for help to ones which can raise the alarm if he gets out of bed/chair and doesn't return within a set period of time.
Have you had an OT in to see if he would benefit from things such as a trolley to help move things from one room to another or perch stools in bathroom and kitchen? They can all be useful, though I think Mum's trolley did actually cause one or two incidents as there is one of those metal strips between the carpeted living room and vinyl floored kitchen, which she would thrust the trolley over to get the momentum to get over the bump, and then she would have to run to catch up with it whilst tea was spilt in all directions. Nowadays she's confined to her chair, so we still get tea spilt as she has a habit of putting things right on the edge of the table but in a less dramatic style!
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