New to forum - so helpful already

Hi all, my mum was diagnosed with psp 18 mths ago but we believe she has been living with the condition for around 3 years. I was living in Australia but moved back to be my mums primary carer two months ago. Mum was living alone and was hospitalized in August due to a bad fall and I realized a few months to visit a year was not enough. Tbh I'm struggling a bit at the moment, mum had a PA who came in for an hour 5 days a week but hasn't been in for 3 weeks. Mum and I are both so tired and she has been struggling with pain and a few other issues lately. Anyhow, not to waffle on, thanks for the advice of ginger for excessive phlegm. Mum has really had a few bad days with this and her mood was very low. So far the ginger seems to help. And the thick n easy mixes in okay, perhaps doctors should be told to encourage this treatment?

Just wondering if any other people with psp have had issues with losing the use of their arm? Mum is in chronic pain and can no longer use it properly... deep heat and paracetamol do little. I also recently discovered mum appears to sleep so much better on a good mattress. Her ones from OT have not really helped but after staying in premier inn we noticed she was up less in the night. Have now ordered her a Hypnos mattress via P.I. website as discounted. Fingers crossed it really does help!

Um anyway, glad invaluable forums like this exist. Thanks all :)

9 Replies

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  • hi kelly 55 I have never tried ginger before mate is that in its natural state or a drink I have always been an advocate of dark grape juice

    which is fairly inexpensive to buy and you can get it at supermarkets and grocery stores if you do happen to buy some to try it just check on the sugar content first jus in case your mum is a diabetic just thought i would mention it just in case the ginger gets a bit much over a period of time its worth a try anyway mate I am having a bit of trouble raising my left arm up I put it down to the large amount of falls I have had on it but never mind still breathing

    that's the main thing ]]]\\\\\ well mate I hope your mum improves a lot more for you as carer and her matress turns out to be a godsend mate for her tell her to hang in there matey peter jones qeensland Australia psp sufferer

  • Please tell us How do use the ginger .

    My bu.sband mouth becomes very mucky , I have found cleansing it with a solution on warm water with Bi Carbonate of soda very heful . He is able to suck and swish sometimes him self

  • ginger s grreat sliice root& put in h

  • hot water 4 a lovely drink

  • Thanks for the kind words Peter and for the grape juice tip, we have not tried that yet. Mum was suffering with a dry mouth in the day and then excessive phlegm at night. She was drinking pineapple juice as recommended but the sugar content is not great and the incontinence nurse said to avoid citrus where possible. The last few days the phlegm had become excessive and mum was going red in the face and getting understandably distressed. Mum also runs the cold water tap over her forearms and hands during these bouts as this helps too. I read a comment about ginger so bought fresh ginger and herbal teas containing ginger. Mum actually likes the taste of the lemon and ginger twining teabags, thick n easy blends in well with it, it's keeping her hydrated (again good for bladder and constipation) and its caffeine free (which helps with constipation too as brits are notorious tea drinkers!), so it's been a good discovery! Haven't even tried fresh ginger yet as tea bags seem to help so far.

    I'm not sure about the mucky mouth sorry cabbage cottage, I am concerned about mums dental health, she has a phobia so hasn't been in years and since losing use of her right arm she struggles to brush teeth etc, but I read it's very important to have a clean mouth to minimise bacteria when swallowing and it going down the wrong hole.

    Mums arm has been bad since before/at time of onset of psp so wondered if many others had this issue and its just a little mentioned additional symptom.

    Will let you know about the mattress!! 4 weeks until delivery unfortunately but both looking forward to a good nights sleep :)

    Take care

  • Kelly, Thanks for posting and joining this great group. My wife didn't have any limbs that caused a particular issue. I think CBD which is much like PSP and has similar symptoms is more apt to have issues. In particular I think CBD affects one side of the body more dramatically than PSP. That's only from what I've read and I'm not a medically trained person. Find a good pain medication which I'm sure you already have done. Keep in touch! Jimbo

  • hi jimbo

    how r u today ???

    it mus the difficult facing xmas ahead - the 1st time you will have been without sharyn but are your lads going to be with uyou at all?

    lol Jill:-)

  • Jillannf6, Thanks for thinking of me. I'll be at my daughters for Thanksgiving and spend Christmas Eve with family at my home. Haven't made Christmas Day plans yet but will soon.

    Jim

  • hi kelly

    welcome to the group!

    fresh ginger is great in juices e.g. carrot juice with apples /celery etc etc whatever u like to put in (if you have a juicer)

    LOL JILL

    PSP PERSON IN TH E UK

    AND A :-)

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