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Willow
5th September 2011, 17:22
Hi everyone, I'm new to the forum and was hoping for some advice. My partners father has motor neurone disease (ALS). He was diagnosed about 4 years ago but his condition has rapidly deterierated over the past couple of months in that he has lost the use of his legs and is now in a wheelchair. He is struggling to eat and needs to have all his food liquadized now. He had a peg fitted and will start using this soon. He is also loosing his ability to talk. It is very sad to see. He is such a wonderful, strong and inspirational man and I have so much love and respect for him. My partners mother acts as his full time carer and I am only able to see them infrequently due to living far away but am keen to help in any way I can.

I was hoping for any advice or guidence as to how I could do this in a non-intrusive fashion. I know he gets bored and frustrated sitting in the house as he has always been such an independent and active person (having run several marathons and been a very skilled football player) so was wondering what you might suggest?

Also, does anyone have any experiences of complementary therapies with MND? I was thinking of perhaps hand/foot massage or aromatherapy?

Any help or guidence at all would be greatly appreciated, thanks so much :)

sarahezekiel
5th September 2011, 22:48
Hi Willow

I've had many complimentary therapies at my hospice. You can read about them and my hospice here (http://sarahezekiel.blogspot.com/2011/09/marie-curie-hospice-hampstead.html)

I hope that helps.

Best wishes

Sarah

Bels
6th September 2011, 12:47
Hi Willow,

My Mum has recently started having complimentary therapies from her local hospice which are working out great. Started with massage I think. Mum has specific pains and the massage has been directed towards those. Maybe good to ask advice from your local MNDA group to see what is available locally.

I live a 5 hour drive away from Mum and one thing I have found to be an ansolute godsend is skype. My Mum's speach is really quite bad now so I haven't been able to speak to her on the phone for a while but skype through video is a lot better. Makes easy regular contact possible without being too intrusive for you.

Good luck with it all.

x

miranda
6th September 2011, 13:43
Hi Willow. Now that my speech is very difficult to understand on the phone, I find that keeping in touch by email is a lifeline but my sons also skype me - they talk and I respond by typing. This means we can chat for ages. Has your Dad got access to any of the text to speech software? I use 'windbag' (I just love that name!!) also I am trialling JayBee. His local speech and language therapist should be able to refer him on to the appropriate services like MNDA equipment loan scheme.

Willow
13th September 2011, 00:01
Thank you so much for your input. Your blog is really inspirational Sarah and the suggestion of skype is a brilliant one, thanks so much Bels and Miranda. I'm going to pursue the complimentary therapies and am downloading skype as I type. Thanks again so much, your advice and kind words really are appreciated :)

IVAN
17th October 2011, 16:47
Hello everyone,

I also have mnd and cannot walk or talk. I find emails and skype brilliant, it keeps me going. I do have jaybee which i have found better then the light writer. I was very active and enjoyed Ballroom and Sequence dancing for 45 years, renovating vintage Tractors, and my trade as a carpenter.

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