Recurrence

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Good evening. My Dad has been fighting his GBM for the last 3 years and it has been stable until very recently. He is now in palliative care. On his care plan it states he should have physio but his OT has told me that he is not a priority. Dad has lost the movement in his arm now and much of his leg. I have been given light leg exercises for him but nothing for his arm. As you can imagine, the fluid is filling in the limbs and it is concerning. Please can I ask if anyone has any advice or exercises that I can help him with?

Thank you

  • Hi Cranesbill,

    I'm really sorry to hear you Dad has reached this stage. I remember how quickly my wife lost her left side once it started to go. Can your Dad still get out of bed at all? My wife had some exercises but by the time we were given them she couldn't really do them anymore as she deteriorated so quickly. I don't think she had anything specific to arms but was advised just to keep moving as much as she was able throughout the day. But that was difficult given she was sleeping 18-20 hours a day.

    Has a nurse or Dr seen him recently? They might be able to give him something to help clear the fluid possibly?

    Sorry I'm not of more help, it's so so hard to watch our loved ones worsening and feel helpless.

    Take care,

    Chris

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  • Hi Cranesbill

    Sorry to hear your update.

    Throughout G's three year journey he pushed the physical limits to the max and then some so we never had the Physio/OT engagement. I would suggest though that if this is worrying you that you speak to your dad's doctor to see if there is something that they can do here to support. If you are concerned about fluid build up then you need to call this out. There may be something that they can prescribe which would help with that. I know at one point they talked about prescribing water pills for G but on reflection they changed their minds.

    Sending love and light and hugs

    Wee Me xxx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • My husband's deterioration was similar, the hand going, arm, sling, shoulder dislocation, foot, leg, then speeded up, brain haemorrhage and death, so no bed ridden unconscious stage. 

    He had a left frontal tumour, may be mental faculties are more preserved but losing movement in arm and leg caused deep depression understandably. 

    We did always try to get physiotherapy, session on health service and private. I have kept the  hand written exercises for arm and leg and will try to upload now.

    Whilst your Dad can do the exercises it will help. Just try to encourage him to carry on. 

    All the best xxx

  • It's also in Spanish. For arm it says open and close hand, massage with objects and move hand elbows and shoulder. Usually a physiotherapist helps a person get better but for a Gbm patient that won't happen, but the visits of caring palliative nurses and physiotherapists help everyone face what's ahead 

  • Hi Chris, thank you for your reply. 
    A doctor came to see him a couple of weeks ago and didn’t offer anything. We have the hospice nurse coming next Friday but perhaps I’ll ring the dr again on Tuesday and try and push for something. He can just about balance on his good leg when on the Sara Steady frame but that’s all. 
    Thank you again and take care. 

  • Hi there. Dad’s is a left frontal tumour too and he knows exactly what’s going on but the words just don’t come. I’m just thankful that he’s quite laid back and although it is frustrating at times, we do always turn it around and have a laugh. Thank you so much for the exercises, I really do appreciate the help. 
    I do hope you’re doing ok.

    Take care xx

  • Hi Wee Me,

    Lovely to hear from you. You helped me with some advice at the beginning of this journey three years ago and it’s so lovely to see you helping lots of other people too.

    I will start the exercises that Daybreak has given me and also call the doctor too.

    I do hope you’re doing ok.

    Take care Hugging