My mum has been in hospital with aspiration pneumonia. She is very anti a puréed diet and thickened liquid and up until recently, food has really been her only pleasure. We/she now have to make a decision about her diet as otherwise, we have been told she will be in and out of hospital with pneumonia.
That aside, she is in a terrible state since she has been home from hospital. We cannot get a word out of her and she seems to be very distressed, she is in bed and writhing constantly. She can't keep still for a second. She has had periods like this in the past, but never as sustained. She is also arching her neck backwards all the time and just looks distressed.
Is this something others have been through? We don't know if it is a stage of PSP or whether she is ill. She was checked by a doctor today and urine and lungs are ok.
I must admit that for the first time I am really concerned that she has had a huge decline in her illness. I hope not and that she will be better once she has fully got her strength back after the pneumonia.
Love to all of you going through similar
Cathy
xx
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CateT
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I do feel for you, my Mum is slowly deteriorating in her illness, choking over her food some days so badly but other days managing to eat well with no choking. It seems to be a feature of Mum's illness in that some days are so bad and other days so much improved. It seems to revolve around her systems, affecting each system in turn.
I saw Mum for the first time for a week today as had been away on holiday, to find her being helped with her dinner and suffering a bad choking episode. It refreshed my anxieties and I couldn't help the tears, she looked so frail and suffering so much.
I wonder if your Mum could be in pain, and if a couple of paracetamol would relieve her symptoms a little. The arching of of the back is something Mum has most of the time, it has caused difficulty in getting her to sit down but encouraging her bend in the middle helps a bit. But sometimes she bends forward so much that she has fallen out of her chair, how inexplicable it all seems.
Sorry can't be of more help with you and your Mum's difficulties, be assured that you are not alone, we are all in this together.
Hi Cate - I am so sorry to hear of your challenges. I had the same response as Barbren did after reading your post - -sounds like it might be pain and/or spasms. My father had both - -we used pain medicine on a pain management schedule - he went from tylenol 4's to oxycodone -small doses but on a strict schedule. We also used Clonazepam for spasms in the same manner - low doses but strict schedule. We used low doses so that dad wouldn't be "out of it" -
Thanks for your comments. She has ended up back in hospital tonight as my dad felt overwhelmed by her agitation and worried that it could be something serious. We gave her painkillers and buscopan for stomach cramps as she indicated she had pain in her stomach but it didn't help. I spoke to Samantha Pavey, PSP nurse and she said that agitation is common and usually linked to anxiety. She suggested Lorazepam to help calm her. Anyway, they are doing some tests in hospital. So difficult to know what is going on when communication is so impossible with PSP!
Samantha is so brilliant isn't she?? I've spoken to her on several occasions and she's always very calm, sympathetic and full of useful suggestions/advice
Hi Cate - so sorry to hear of your Mom's distress and yours as well. My Father's whole body is rigid and in the last month he started arching his neck backwards, and sits like that permanently now, making feeding him a challenge. He cannot show any emotion and cannot communicate with us. Unlike your Mom, he does not seem to be in pain. His Neurologist prescribed Biobaclofen for the rigidity, but it does not seem to be helping him at all. His sight has also been greatly affected by the disease. I believe he can see me, but I am not sure how well. I hope you get some positive results from the tests. My best wishes to all of you.
Hey Coleen - don't waste your time on Baclofen - it's not going to work. Bacoflen is for spine injuries and affect a different part of the brain that is not in the brain were PSP is. Talk to your doctor about how to go off Baclofen since you just can't stop it - you must gradually decrease doses. We had tried Baclofen with absolutely no improvement. My dad was extremely rigid -in fact the doctor we saw was a specialist in PSP and had not seen anyone as rigid as my father - here is what helped for us - -my dad was more PSP-P than PSP-R (not sure if you knew their were two subtypes) so Sinemet did give my dad a little relief - we also used Clonazepam in small doses for the spasms -and we did botox shots in the neck.
Sorry to contradict , dlera, but Baclofen is not just for spinal injuries. It is used, with good effect, in stroke patients and people with MS to help reduce muscle spasm amd spasticity. Some people get very good results on low doses but for others it doesn't work and just makes them very drowsy. It is usually used as first choice because it is less "invasive" than Botox injections. In the same way Sinemet works for some and not for others - PSP affects different people in different ways and you have to find what works for the individual.
My advice to Coleen would be to give it a try for a while - it maybe that you will have to adjust the dosage (in consultation with the doctor) to find the effective dose.
Many of your loved ones are more advanced than my mum, who can still communicate with me (she actually has MSA but v similar to PSP) although her voice has started to go now. But I can see what is ahead and I wonder what it will be like to go through times like this. You are all so brave.
Cate I hope the hospital stay can calm your mum and they take good care of her, your poor dad - please tell him how much our hearts go out to him too, to see his dear wife suffering.
Much love to you Cate, Coleen, Barbren and Danielle.
Hi Cate - be cautious of Loraezpam - Lorazepam actually made my dad's agitation and anxiety worse and generally lorazepam is not given to people with nuerological disorders - this is why we used clonzepam. Also - is she constipated? That my make her stomach hurt as well. I would suggest charting her output both urine and Bowel going forward in constipation can be a big issue with PSP - we used senna tablets daily and miralax to help my dad.
Hi dllera, my mum recently was started on clonazipam but it made her so spaced out that she begged me to stop giving it to her. She has REM sleep disorder (crys out and acts out her dreams) and had started to fall out of bed several times a night. she also does not want a hospital bed!!! hard for me as i was getting up several times a night. We stopped the clonazipam and pad the side of the bed she was falling out of with pillows and she has stopped falling out now. all very bizarre, but if it starts up again she will def need cot sides or hospital bed.
thanks for all your posts and advice, its helpful to see what works for others.
Hi, This is probably some stomach bug and should stop after a day or two. If communication is difficult then asking them if they are in pain and getting them to point with the index finger is useful. I think that is what you have been doing. The painkiller I found useful the past month is ibuprofen and you can buy the 5% or 10% gel in the shops for a pound or two. I don't need bother trying to get her to swallow a painkiller for external pain, I simply apply it where the external pain is. I found it useful when my mum complains about arthritic pain in her weak and rigid arm. It seems to stop the pain and she seems to have greater control of her arm and hand after applying. Do not use it too much however because it can interfere with other medication and can potentially cause stomach ulcers, aswell as cause skin reactions. Always read the instructions. Anyway good luck.
My mum is still in hospital. They have catheterised her and apparently the bag filled up immediately, so we think she was having trouble passing urine even though she doesn't have a urine infection. Is that something common to PSP? Perhaps her bladder was in spasm which I would imagine can be very painful.
I just hope that the second hospital stay doesn't set her back as much as the first. The good news is that she is now restful. Thank goodness. Dlera, thank you. I will mention clonzepam to her doctors.
Hi Cate - thank goodness things have calmed down for you! Urine retention and constipation are very common in PSP - my dad had a foley cath for over two years and what a relief for him because he could no longer release and retaining urine is very dangerous. Urine output can tell you a lot of information so I would start tracking/charting it along with bowel output to avoid constipation issues. Charting is useful for tracking hydration, infections etc. Be aware the caths will cause infections just becuase it is a foreign object in the body - ways to try to minimize these are making sure that your hands are clean and cleaning the cath area every morning/night and I also did this whenever my dad had a bowel. He probably had the cleanist cath on the planet! I'm glad she is now restful!
My wife June is 7 years into PSP and has had the neck problems of contracting muscles. This has been overcome by Botox treatments every 3 months. This releases her muscles and she re-levels her head back to it's normal position.
The dosage is high at 500 to 600 ml into 4 muscle ground at her neck level and at the base of her skull. She has had 7 treatments over the last several years and is very happy with this approach. She is able to eat her food after the treatment and her swallowing has improved and her night time snoring has been eliminated for about 2 months after the treatment.
Thank you Richard for explaining that Botox helps your wife's neck. My mum's neck leans back alot and I assumed it was either weak front neck muscles or contracting muscles at the back of the neck. Can you name of the 4 neck muscles involved that does this? My mum has this particular probelm and we considered getting a neck brace but maybe botox is the way to go.
The neck muscles that were injected with Botox are the levator scapulae and the trapezius. This has relieved the contracted muscles. The Doctor did all the planning and the injections into both sides of June's neck and after 2 days her head went from looking at the ceiling to being able to look down to her food. Good luck.
Dear superman and Richard, my mum has 3-6 monthly injections of botox in her neck, really helps her as her neck twists (dystonia). we went last week and the doc decided to do the bacl of the head in 2 areas as she was worried about my mums choking lately, and that the botox could exaccerbate this.
Hi clara. Do mean the botox 'alleviates' the choking difficulties. How long does the person have to stay in hospital to have the botox? Do they have to sedate the person as they would a full operation?
My mum a few months ago had similar symptoms for one night a few months ago. She was going crazy and writhing in bed for most of the night. We did not know what it was but a day or two later I had a terrible stomach bug and realised that probably she had the same. Stomach bugs can be very painful and the cramping pains only dissipate when you are sick, however people with PSP can be so weak that vomiting is not an option. Also I found that eating, or taking oral painkillers makes it even worse because whatever is in the stomach just wants to come up. I take buscopan for it which I think helps a little, but I get it usually about twice a year and the only thing that helps is by trying to be sick. Luckily it tends to go by the morning.
I really do feel for you xx ...my dad was taken ill with aspiration pneumonia this week and I've stayed at the hospital as the ward are not educated in PSP so I can tell them what dad's needs are... I've had no sleep for a week as he too can't keep still and having spasms. It's so distressing to watch but he is quite still during the day. Tonight the ward have kindly arranged a special to sit with dad to let me have a rest. My heart goes out to all that are suffering with PSP and to their love ones who support them and being their voice who 'fight for their corner' x
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