Does anyone experience their psp loved one is crying and moaning a lot? It is often not pain related, putting my mom in a wheelchair and walking seems to calm her but can't do that 24/7. She hardy sleeps as well despite giving muscle relaxants as she has adverse reactions to sleeping meds. Anyone else experiencing this and what are you doing?
We are waiting for her pain to end as there is no help in sight.
Hi hiebert
My mum has been doing this for quite a while now. For no apparent reason she will howl scream and cry, when we ask what's wrong most of the time she can't respond as speech is really difficult but occasionally she mutters 'nothing ' I think it's one of the symptoms of this horrible disease and I know she can't help it. Whilst we don't have a cure I have found that distracting her with something else when she starts this does help. It's hearbreakibg to listen to when you know there is nothing you can do. Stay strong. Sending you love and prayers. X
Thanks so much, yes we find taking her for walks helps a lot, we live in Canada and since we have early winter and the ground is now covered with snow we are limited to indoor walks which are much less rewarding to both of us. We used to distract with music, reading or colouring (me not her). But that option is gone now.
Have no experience with PSP, only CBD. I think if I had a reasonable intellect trapped inside a failing body, I would scream and cry too! This is maybe the only way your mum is able to let loose with her feelings. Could it help if you were to have a Frank conversation with her, tell what you understand so you are on the same page. Then tell her that the illness does not change the fact that you love her! You may have already had this conversation!
Have you thought of suggesting to her that an antidepressant might help?
I found it difficult to talk to my husband about his deterioration for a long time, until he communicated his feelings and difficulties, and accepted that it was not his fault but something far more sinister than we originally thought eg. Parkinson's.
He did not seem to need sleeping meds or antidepressants, but we boxed on in a much more comfortable state of mind until it was obvious we needed to hospitalize him.
I hope you find a solution to ease your mum's unhappiness. There are many people on this site who have seen the journey through to the end, and will have suggestions for you.
Hugs
Jen xxx
Hi . My mother too has something similar . She does make sounds at times which appear that she is in pain. When she could speak , she did not share the reason. Not that she cannot , it’s difficult to assess. However, I have noticed that post her PEG , it’s come down - so a possibility that some bit of that may be on account of hunger .
As far as sleep is concerned - she too cannot sleep and medicines have adverse effects. We have tried an Etilam at times which helps . Someone recently told me that since the muscle around the throat are for speaking / eating etc and since that is impacted - the muscle supporting the neck for breathing etc could be impacted and thus causing sleep apnea. Have not tried the machine for that too figure if it works. My mom too ends up sleeping in chairs and in the car when I take her to the doctor .
Take care
Anshuman
Thanks for your thoughts on things to look into. Not familiar with etilam, but when I googled it, it was classified as a stimulant?
Hi. As per a online Medical store website :
Etilaam is a derivative of benzodiazepine that is used for the short-term treatment of insomnia (inability to sleep) and anxiety disorder.
The information given above is for Etizolam which is the active ingredient of Etilaam.
Hi unfortunately one of the symptoms of psp everyone with psp is different my brother going on 7 years now has always smiled and in a good mood has never complained but I have always said it would be heartbreaking if he cried a lot, I hate this disease take care. Nettie
My mom, like so many others, had a lot of extreme highs and lows - crying and laughing loudly. The laughing was fun; the crying less so. She always comes out on the other aid and sometimes we can talk her through it by converting it to laughter. But we ultimately put her on a "mood manager" the neuro recommended. It's an antidepressant called lexapro and she takes 10mg right before bed. We noticed improvements shortly thereafter. She still gets understandably frustrated and upset sometimes but the lows aren't as low. And she still giggles away! Good luck.
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