My mum has had PSP for 7-8 years. We were told by neurologist last October that mum is now in the final stages. Mum can no longer walk, her speech some days so bad she is almost impossible to understand, all food liquidized and drinks thickened to a custard consistency. So far no chest infections. A week ago we had to call doctor out as mum was very feverish, headache and felt sick, she was sweating so bad but didn't have high temp, the doctor ruled out chest infection but queried possible UTI. Next day she felt much better. Tuesday night when my husband went to visit her at care home, again if found her with high fever but also bad chest pains, ambulance was called. She was treated as having suspected heart attack as first blood test showed higher levels than normal, the test was to be repeated in 6 hours. The second test showed the same levels so heart attack was ruled out. The doctor thinks mum has experienced an esophagus spasm. This was quite unexpected as I can't find hardly any info with this and PSP? It was never mentioned by neurologist last October when I spoke to him privately to ask what should I expect in mums final stages, he talked about the body becoming more rigid etc but nothing about spasms at all. I know some PSP sufferers do have various body parts that spasm or some full body spasms.....but internally? I'm really concerned about this new symptom, can anyone spread any light on this matter for me?
Thank you and wish you all well.
Jo (uk)
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JoJo-K
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Those who have studied the problems that PSP causes to the swallowing muscles and mechanisms have noted a condition called tertiary oesophageal contractions. These are a sort of spasm when the oesophagus does not clear material after the first or second contractions. I'm not sure if the doctor was referring to this, but I would assume such spasms would occur after eating, so I'm not sure of the timing in your mum's case. I would have thought such pains would have disappeared by the time the hospital performed the tests. (As you know bad bouts of indigestion can initially be taken as a heart attck).
Perhaps those on this forum who have loved ones with severe swallowing problems may have encountered something similar to you. My wife only chokes on liquids at present, so I have no experience with more severe swallowing difficulties.
She may need videofluoroscopy and swalling studies to identify this problem.
Thank you for your reply, the pain and fever started around 8pm on Tuesday which was 3 hours after mum had last eaten, think we can also rule indigestion. On both occassions mum has had fever 24 hours first time and felt unwell but on that occassion no chest pain was present. I wonder if the problem is not caused by PSP? With mums swallow already being so bad an added problem with the oesophagus would be disastrous. ( she has already refused the peg feeding option) Again thank you for your thoughts, we are still waiting for a phone call from a doctor from the medical team who treated her at the hospital.
Jo-Jo-K, I urge you to check all the posts on this and other resource sites about PEG feeding. Don't make a decision lightly. A PEG can raise lots of questions once installed. Honor your mother's wishes.
The decision was in no means made lightly, mum also wanted DNR included in her advance directive. Mum is fully cognitive and I honor all her wishes to the letter. We are very open about talking about her condition and my mum is very blunt when asking questions, I always answer with honesty however certain things she has yet to experience I don't go into too much detail. After all of her years suffering she tells me she's had enough and doesn't want to prolong the PSP in anyway. I wonder why you've brought the subject up regarding the peg?
Hey sweetie, of course no offence taken, I wasn't sure if you had advise one way or the other regarding peg. I value everyone's input and advise and respect different opinions. Please let me know how your appointment goes.
Mum had exactly the same problems in the last few weeks but went onto prophylactic antibiotics as we could no longer pin down if she was having an infection or not. I did ask one of the nurses if she agreed that with the heart also being a muscle there is no reason why that should also not be affected and she agreed.It does make sense. Mum did go on to get the overall stiffness but only in the last week.
Thanks Dianne for your reply, still no phone call back from hospital, but mums speech therapist will call me on Monday, she monitors mums swallow, I'm hoping she can explain more about this problem. I have in the past many of your posts and I hope you are doing ok xoxo
Yes I am fine thank you. It was all rather surreal when mum went after such intensity as you yourself will be feeling at the moment. But I just feel an inner peace at the moment although I do get flashbacks from those times. I try to store them aside but they do catch me at the moments I least expect them to.Our Speech therapist was a godsend throughout and the only consistent professional. Thank goodness she was there for us.
I appreciate your input so much, after losing your own mum so recently I have such an incredible amount of respect for you to still be trying us all here. As you said your mum had exactly the same problem with the oesophagus spasm, did this happen occasionally or was it a regular occurrence? I hope you don't mind me asking, I would hate to upset you in anyway. I just have no idea what to expect with these changes with mum, in all my research into PSP and related symptoms, there is very little about oesophagus spasms that relate directly to PSP.
I lost my Dad 2 years ago with very similar symptoms to PSP and totally understand how you feel, relief their suffering is over but a huge sense of loss.
We have an appointment at the University neurologist department this week. I'll ask them about this condition when we are having the swallow test done.
That's very kind of you to offer, but please don't worry trying to remember questions on my behalf. I should have more information Monday when I speak with mums specialised speech therapist, she keeps a close eye on mums swallow. I hope your appointment goes well.
Hi yes my mother age 81 experienced this last year, she is late stages Psp, has only had the one episode for which I called an ambulance and she got taken in, it settled after about three hours. No medication given, at first they thought something may have got stuck on n throat, no one really got to the bottom of it.
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does anyone know the answer
Does anyone know----?
Does anyone with PSP get dizziness when looking down?
PSP has taken my mum away from me.
