Getting worse?

Hello, I haven't been on here for a long time. My mum has PSP she was diagnosed 3 years ago but we think she has had it for at least 5 years +

The reason for my post is, although I'm pretty clued up on psp I'm some what baffled. Mum is continuously loosing weight now, she is on puréed foods and is really struggling to talk now. Just recently she is not remembering me visiting ( although I go every day ) her short term memory is getting worse, is this normal? Also these last few days she seems as though she really isn't "with it" I talk to her and it seem as though she isn't listening or isn't bothered? Also her voice has changed, if this is possible?

She just doesn't seem to be interested in anything I say or do with her, it's almost as if I'm not there?

Please help, is this normal???

14 Replies

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  • HI Steph75. Although nothing is normal when it comes to PSP, I can tell you that my Dad was the same. Some days he seemed to not be "with it". Unfortunately we will never know if he was lucid all the time or not. My Dad's speech deteriorated very quickly. We tried various other ways of communicating with him, like blinking or lifting a finger. We also spoke to him in question/answer form.

    Regards

    Coleen

  • Hello Steph75

    What you describe is a normal variant with PSP (and some similar conditions). PSP sufferers have damage to several areas of the brain that creates the symptoms you describe. One is called the reticular activation centre that controls the sleep/alertness cycle. It appears that thiscan present the PSP sufferer with the inability to sleep or the symptom of wanting to sleep most of the time. In addition to this, fatigue (similar to chronic fatigue syndrome) is a cardinal symptom of PSP (through various problems with neuron damage and neurotransmitter dysfunctions along with mitochondrial dysfunction).

    In addition to all this there is damage to parts of th frontal cortex and basal/ganglia and brain stem that result in the problem of being unable to "find a word or phrase" and it takes the sufferer a long time to process questions and responses, sometimes never actually finding the words they want. Added to this insult, is the fact when they recover the right words, their voice is so low (or have slurred speech or no voice at all) that they cannot make people understand.

    Put all this together, and you could see a person like your mum with an apparent lack of interest, not appearing to want to communicate, and seemingly not bothered. She is none of these things but the brain damage has created this scenario. In addition, in order to conserve energy, it appears that some functions become "too hard", like speaking, eating etc (and even like walking). Of course, all the latter functions are impaired by real neurone damage to areas of the brain that regulate eye movements, swallowing, voice and mouth movements, walking, excretory functions, and so on.

    PSP does not affect the ability to hear, so your mum will know everythig you say (unless co-morbidity diseases are present).

    Short term memory can be mildly affected in PSP sufferers, but it's more often a problem of organising thoughts. Obviously, a few people with PSP also develop dementia like Alzheimer's.

    As for losing weight, it's not uncommon for those eating less through dysphagia, especially pureed food, will begin to lose weight. Other co-morbidities can exacerbate this problem.

    Hope some of this helps. My wife has had PSP(RS) for 5-6 years. She has similar problems to your mum. However, I look after her at home. I have an opinion (so it is to be taken as such) about these symptoms. While there is no way of preventing the neuron damage causing the symptoms described above, nor any long term way of slowing the progression, I try and "stimulate" my wife's brain (so to speak) and not allow things to simply happen. Thus, although she falls each time she tries to walk, I prevent the falls, but walk her the length of the home once each day, plus do some simple exercises. When she just grunts an answer to my questions, with humour and persuasion I get her to say yes or no (or a few words). I don't let her sleep in during the day (I get her out of bed at 6:45am and toilet her and give her a cup of tea, helping her if she chokes a bit, wash her and dress her).I organise some activity in the mornings to keep her as alert as possible because she'll be utterly fatigued in the afternoon. While she wants to close her eyes all the time I try and keep her interest in what I'm doing in the kitchen etc. I will take her into the garden for short periods, and use as many occasions as possible to "stimulate" her brain. (I do have help during the afternoons for showering and during the week I have a bit of respite, and a nurse monitors her progress, nevertheless 24/7 caring is tough....but my wife has the more difficult part....with PSP).

    I know a lot of this cannot be done in a nursing home as much as in one's own home, so sometimes a PSP sufferer will become very inactive, but still they can understand what is happening around them.

    I think I've said too much...

    Cheers

    T.

  • I am new to this forum and, like you Strelley, am sole carer for my partner with PSP. He was diagnosed in March 2013 but had symptoms since July 2010. We live in south west Turkey. C is a techno phobe but following his diagnosis I have researched PSP on-line, read volumes of material out loud to him and we discuss his condition on a daily basis. I hope to care for him at home until the end. He is currently still walking, slowly, with a cane; sight is bad; but swallowing and voice still very good. Since diagnosis he has been gargling at least twice a day with 'Sanderson's Throat Specific' a Victorian herbal remedy sold in all chemist's in UK. This is a remedy my father swore by for voice problems and we get friends to bring from UK when they visit. A doctor who stayed with us last year said he didn't know if it was the actual act of gargling or the remedy which was doing good but so far degeneration of throat functions lags far behind loss of sight and mobility. We are not in any way committed to natural remedies, just seemingly having some success with that one. Plus I have yet to come across any mention of gargling as a aid to throat issues in PSP which I find strange. However, I digress from the point I actually wanted to raise here. Following diagnosis we have been debating the nature of C's death. He wants to die with dignity and if we had the money would already have joined Dignitas. As sole/principal carers we have a very difficult role which in many cases could be severely detrimental to our own health. C does not want to be tube fed. We agree that the kindest end would be for him to slip into a form of coma from which he would not emerge. He currently feels safest when in bed as he has had many spectacular falls. Hence he sleeps around ten hours at night and another 4-5 during the day and I do not argue with this seeing it as a rehearsal for the end game. Have you and your wife discussed the nature of her death? I apologise in advance if this is too blunt an issue for some forum members, for us it really is the crux of the matter.

  • i agree with you = it is importnant to discuss edeaht and who it can be achieved with dignity 1

    i too do not want to be peg fed when i can not longer enjoy my food and cannot do anything 4 myself - as A PSP person i would not want to continue beyond this at all and have an LPA in place an A4 sheet with myh wishe s on it and that is as far as i can get with my partner )he si unwilling to discuss funerals etc as he finds it v upsetting and depressing )

  • Our thinking, or forward thinking, Jillann, is pretty much the same. My Health Care Directive is short and straight-forward, and my Health Care Director (my best friend for 30 years) know and understands what I do and do not want.

    I don't want a PEG either. Difficulties with eating/swallowing are just starting to be an issue. If I choose to get a PEG, I know there are other medical treatments/procedures that can sustain my life.

    But I ask what for? Have given this so much thought over the years. As caretakers know first-hand, this just gets so much worse, but with medical support, you can be sustained. But sustaining also implies more suffering, caretaking, expense, so on and so forth with an inevitable end (at least that we know of right now).

    My girls are in their early 20's. I decided not to ask them what they want because I believe and know they do not have the life experience to provide reasoned input not only because of their young age, but I'm their Mom. My guess is they'd say do anything possible to keep me around, yet I don't believe they have an understanding of what they'd experience.

    Judy

  • hello pattz

    Thank you for your post. Yes, we have everything in place for 'the end game". While my wife was fully aware and able to sign her name, we discussed everything about PSP, and compiled a living will (called an "advanced health directive" here in Australia). She stated all the medical issues she wanted (or did not want) carried out during the course of this disease. She stated she wanted no medical interventions (and her neurologist noted this in his records). If she contracts aspiration pneumonia she does not want treatment. If she cannot eat, she does not want a PEG. I have been made power of attorney for all matters apart from health decisions (but her living will covers health issues). She has decided to stop eating all together if swallowing becomes burdensome. Additionally, she has made out her funeral service and plans etc.

    We take the one of the two main views that neurologists espouse for this condition - we take no medications (like dopamine, antidepressants, muscle relaxants etc). We will expect medications that alleviate pain and give comfort when the hospice/palliative care stage arises. All these things are available to family and our Care Provider.

    (With respect to your throat gargling, I am guessing that it may assist with mucus build up, and perhaps act externally on the throat muscles. However, the nerve damage to the hypoglossal, glossopharyngeal, facial and vagus nerves cannot be treated with any medication, and there is nothing to control the damage. The severity of such nerve damage will vary from person to person with PSP and some may be unable to swallow or open their mouth while others reach the end stage with the ability to still eat small amounts.

    All the best

    T.

  • You are right on throat issues but, bearing in mind that each individual with this condition would seem to follow a unique path, I hope that the regular gargling may be postponing throat degeneration somewhat. In a similar frame, C was really fit from sports such as tennis and fencing and daily gardening, plus he is not tall and has a compact build, so damage from falls has been confined to bruises and scrapes and one fractured wrist bone over a year ago. C is taking levo dopa and a sedative to sleep at night and an anti-depressant. We do not think the levo dopa has any effect anymore (it had startling but short-lived effects initially) although he is still below half of the maximum dosage prescribed here. However, our neurologist who is very concerned and helpful continues to recommend he take it - we think because she doesn't want to admit there is nothing she can do. So we go along with it at the moment but are prepared to give it up when C decides he wants to follow that course. I do admire you and your wife for forgoing medication entirely.

  • What you say is always so interesting and informative, it can never be too much. Thank you!

    Nanna B

  • What you say is always so informative and interesting Strelley, you could never say too much.

    Nanna B

  • hi nanna b

    have you discussed this with your husband or is it too difficult to do ?

    i should like to know = we are going to seed myh dad on monday 4 a few days as he has had 2 TIAs int he last week and is back in hospital

    a t92 he has had a pain free life and i do not want him to suffer at all

    lol JIll

    :-)

  • Strelley I also forgot to say in my reply to your earlier post that I don't think you said too much at all. Whilst being new to posting I have been reading this forum and its US equivalent for some time. As well as gaining invaluable knowledge about all aspects of PSP, reading on-line is, for me, a form of respite. Hence long posts are always welcome. A good read no less.

  • Hi Steph75,

    couple of thoughts. Have you checked for any infections, if this has just happened? It might be a good idea to get the doctor involved, just in case something else is going on. PSP loves sharing the body with lots of other conditions!!!

    I agree with the other replies. S, although still in early stages, often just closes down. Can't get much out of him, appears to be asleep, but isn't. Won't join in a conservation, because it's too much effort and can't be bothered. His memory is fine, but does go away with the fairies occasionally!!!

    Lots of love

    Heady

  • Dear Pattz,

    Be very careful of long term use of levadopa. My father had it with disastrous results and painful complication with dystonia. Google this and see what you think. I wish that we had never seen the drug, but as we all say, every one is different. Some consultants are so ill informed, I was going to say ignorant as I do feel so bitter about my father's treatment. A

  • Hi Steph75 my sister (80) is in a nursing home was diagnosed about 3 years ago but I think she had it maybe a year or so before.She was in a independent living complex but kept pulling the alarm call and getting very anxious when carers where not there on time then she had a fall went into hospital then to a rehab hospital then to nursing home. She cannot feed herself now can't walk or weight bare or talk very much, now on very soft diet problems swallowing but as her power of attorney I am not having peg fitted, some days she is bright and seems pleased to see me other days her eyes are closed but she holds your hand tight but no communication! this is such a horrible disease and I wish for God to take my sister out of this hell as she has no quality of life I wish you all the best but keep looking on this site and call the help line they are so very helpfull take care.

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