This is my first post, my husband 79 was diagnosed with PSP 18 months ago. My biggest frustration and upset is his apathy and lack of communication. We can have good and bad days and at hospital appointments he has proved he is able to communicate. It is just heartbreaking that he has no will or desire to speak or sometimes acknowledge I am there. The speech therapist has suggested speaking to his neurologist about possible medication to help with this and provided an article which explains my husband so well.
I am a little shocked that she has suggested this rather than it being mentioned by his neurologist. As I have mentioned this to them in previous visits. At the moment he is on Madopar.
Any advice would be appreciated.
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Tulipstaffie
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I'm sorry to hear this awful disease has brought this complication. I totally understand it and experienced it with my PSP person.
I think we just don't really understand the brains functions with this disease. What I do understand absolutely is that is the disease and not the person.
My PSP person could switch quickly from slurred, low or no speech when important and vital information was needed in a care or hospital situation to loud, clear and articulate speech 10 minutes later when exercising ill judgement.
Once he pushed his walker into a glass door panel while in bare feet and was asked to take a seat while the broken glass was swept up and he fought with clear and articulate speech insisting he continue his journey in bare feet across the glass to his intended destination.
It made it very difficult when in hospital with medics not familiar with PSP because on a face value presentation they could find an uncooperative patient with no sign of uti or other infection who could later appear excited to give trouble.
That could lead to some of the physical care needs falling back in priority while they dealt with the behaviour issues presenting.
That is a blunt description and I don't describe it that way lightly but that is what it was on many occasions.
I would take the speech therapists advice absolutely. Hopefully medication can assist in your case.
Please don't alone or frustrated. Always remember it is the disease and not the patient. Even if you have a patient who had apathy before they will ill, the disease gives them no chance to understand or correct their behaviour. It takes everything away from them.
hello, sorry to read your problems with the apathy and speech.
My husband experienced problems with apathy initially. We hadn’t realised it was part of the condition and we all found it so frustrating! From a person who was always on the go and doing something, to then doing nothing, was hard to come to terms with. Eventually we found the one thing he would do was large piece jigsaws.
His ability to speak clearly has varied, often with visitors he would seem better and then later it would be more slurred. Tiredness or not having to try so hard, I don't know. Now he is speaking less, another thing to come to terms with.
We tried Madopar on two occasions, increasing the dose the second time in case it hadn’t reached a therapeutic level but to no avail.
As DaffodilPrimrose said it is the condition not the person, this helped me understand what/why it was happening. After a while it wasn’t an issue and we stopped trying to entertain him. The TV became the most useful item, whether it was fulfilling the ‘doing something’ and not having to speak, as he was watching the tv, I don’t know but it was less frustrating all round!
Totally understand!!!! How many times early on when my husband would not answer a question I asked!!! He could talk when others were with him, but not always me! It is the way their brain processes! They take longer to organize their thoughts, it takes a lot of effort to vocalize and so is easier to just not answer or talk. Frustrating? Yes, but they can’t help it!!! It’s the disease!! Did I get frustrated? Yes!! Did he know I was frustrated? Yes!! He’s been gone for 3 years now, had it for about 15 years. Redx his last 5 years as PSP. Feel bad at how I treated him, but am trying to forgive myself. I didn’t understand as much about the disease as I do now. My heart goes out to all of you struggling! Enjoy the good days and endure the not so good!
thank you, I am under no illusion and do understand it is the disease. Knowing it doesn’t make me feel any better. The frustration I feel is just as much if not more with myself. I hate what this disease is doing to my husband and to me and as I know we all feel at times that there is nothing we can do to make them better. I’ll be there for him until the end and just take each day at a time and deal with whatever this disease throws at us. Also, enjoy and treasure each good moment or day which we do have.
My thoughts are with all those that are currently and who have lived with this disease.
I'm sorry to hear that you are facing these issues with your husband's PSP. I recognise the part about him making more of an effort at appointments or with health professionals - my husband still tries to comment on a television programme or make a joke, but gets frustrated with having to try so many times to repeat or explain and his voice fading to a whisper when I ask him to speak up. He seems more upset when I'm the one not understanding. Earlier when he was first diagnosed, he would shout and tell me to "read his lips". I think he was very disappointed that his wife, of all people, didn't understand him. So I think he has given up on some aspects of communication out of fear that I'll fail to get it yet again.
Every case is different, it does sound like there are more options to try with medication in your husbands case. Is the Madopar making any difference? If not, the side effects could be causing some of the issues.
My husband was given Amantedine when his initial response to Co-careldopa started to weaken - we had to ask for it and I believe they may be more reluctant the older the patient is (my husband is 68). It seems to help with movement, with the bonus effect of more "energy" or "drive" - but he can only have it early in the day as it is likely to cause agitation and sleep issues.
We also have a drug used "off label" that appears to give some "get up and go".
He's on a mild antidepressant (citalopram) which seems to reduce mood swings and pseudo bulbar affect - but it might also remove a bit of motivation.
The flip side of having motivation is impulsive and obsessive behaviours - so no easy answers I'm afraid.
I wish you the best, you are definitely not alone in how you are feeling; keep fighting his corner, ditch the guilt and Please Stay Positive (to quote some if the regulars on this forum 😉).
My wife has CBD and her ability to speak was gone about 4 years after first diagnose of illness in 2017
Currently when I ask something there's no confirmation of any kind.
Incidentally it occurs that she can confirm with a yes or no, and sometimes it's meant the other way round.
So actually in this stage there is no communication at all and as caretaker I look at her body language, but most of the time I have to take wild guess what she tries to say or what is going on.
Very frustrating if one wants her to have optimal comfort.
Apathy is one of the most prominent symptoms, and is very frustrating. It cause a complete personality change in my husband. It was like living with a complete stranger at times. Do the best you can and take it day by day. 🤗
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