merc1
member
Reged: 20/02/2008
Posts: 786
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Some of you may have noticed that I mentioned that I have a friend with MS.I don't know a lot about it but am learning fast!! She is bedbound and can not really eat because the muscles in her throat do not work properly.She can eat little and that needs to be very finely pureed.She is getting spasms which are painful and which increase if she eats at all!! She is very reluctant to have a tube put in to her stomach to feed her.Her quality of life is so poor.I visit and do my best.Anybody out there had similar experiences or suffer from MS.I know it can take many forms.
Thanks in anticipation.merc.
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issi
member
Reged: 30/09/2007
Posts: 3011
Loc: Surrey
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How awful for your friend Merc1. I did know someone with MS many years ago and she managed a reasonable quality of life for many years as she was part of a group of us who went to dinner once a year and I saw the gradual changes in her condition. I pray that something can be done to help your friend. x
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merc1
member
Reged: 20/02/2008
Posts: 786
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issi,thanks but nothing can be done.It is really agressive and I can see her losing the will as she gets weaker,week by week.Her husband hasn't worked for 3 years and never leaves her.I don't want to share too many details on the forum but they need help but will not ask for it.She has carers 3 times a day. merc.x
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ChrissiFi
member
Reged: 28/06/2006
Posts: 1265
Loc: Somerset
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Merc,
I really feel for you.
I don't know about MS but do know a little about feeding tubes. My mum had a tube fitted to her stomach (this was an alternative choice to a stent to keep her throat open) when she became unable to swallow due to oesophagus cancer and it made a real difference. Yes it meant she had to be at home for quite a few hours a day whilst the pump 'fed' her but it did give her the strength to have some quality of life for a few more months until the disease became uncontrollable and she decided to decline the feeds rather than prolong the inevitable. In your situation I know I'd do anything I could to persuade my friend to have the tube fitted but in the end it's her decision and deciding not to 'eat' takes a lot of courage. I know from my own experience with my mum that watching someone starve to death through the decision not to feed or drink is the most horrible thing imaginable but in reality all any of us can do is support the person as best we can as it's ultimately their decision (it's apparently very rare a doctor would effectively force feed someone with a terminal illness).
I really, really hope that something can be done to control your friend's condition. The very best of luck!
Chrissi
x
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merc1
member
Reged: 20/02/2008
Posts: 786
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Chrissi,Sorry to hear about your mother.It is very hard.My friend was in hospital the other week as she had fallen out of bed and broken her leg too,would you believe!!
Thay tried to persuade her to have it then and you have to be asessed to see what frame of mind you are in.They didn't pursue it and she is home now.If you read my contrib. on the Carers post you will see that today it was the catheter all night.I said was she hungry and she said she would have been if she hadn't had all the messing about with that!!! So yet again she hadn't eaten anything.Very difficult. Thanks for caring,hope you are happier now,merc.x
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Breda
member
Reged: 28/08/2008
Posts: 4
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Merc1 My mum had MS and thankfully it was not as aggressive as your friends it was diagnosed in her mid 40's and she lived until she was 72. However she did spend her last 15 years in a wheelchair - she struggled with a walking aid up to than. She had a great heart and never complained but I feel sad she didn't have a fuller life. Through the MS society (who were very supportive might be worth getting in contact with them) I met other MS people and they were all different in the way MS was affecting them. My mum had remissions when she felt somewhat better hopefully you're friend will get over this spell and have an easier time ahead x
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Anne62
member
Reged: 28/05/2007
Posts: 262
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Sadly my daughters best friend has just died recently from MS, she was 34yrs old she had the aggressive kind like your friend merc1 and she started with it in her early 20's, it has been such a sad time for all her family and loyal friends to accept.
x
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xxxSummerxxx
member
Reged: 29/03/2008
Posts: 4394
Loc: Essex
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Ladies,
I know very little about M.s,thank you for sharing your your experiences. Im going to do a search on the net to try and understand this terrible Disease.
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merc1
member
Reged: 20/02/2008
Posts: 786
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Summer,I knew little of it and as Breda and Anne62 have said it takes different forms.The aggressive sort is horrendous to see,when you can't swallow normal food like my friend and do not move at all from the bed.So sad to die at 34,Anne62. merc.x.
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Sussexgirl65
member
Reged: 17/03/2008
Posts: 202
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Hi all
thanks for this posting - my aunty has MS and it's her birthday tomorrow, so I have just ordered her some flowers to be delivered, as reading your postings made me sit back and think about her.
my cousin also has MS and he is in his thirties. He is not the son of my aunty, and in fact they are not blood relatives, so it's just a coincidence that they both have MS. My cousin's MS is thankfully not the aggressive kind, by my aunty's is nasty and she is barely able to walk now.
SG
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merc1
member
Reged: 20/02/2008
Posts: 786
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That's sad SG.I don't know how common it is statistically?? I am sure your aunty will love the flowers.I took my friend a balloon last week.She can not turn her head and her vision is not good so one on a ribbon with a weight was just the thing.merc.x
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Sussexgirl65
member
Reged: 17/03/2008
Posts: 202
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What a lovely thing to do merc1 - I expect she really appreciated that.
Take care
SG x
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 Happytigger
member
Reged: 31/08/2008
Posts: 1618
Loc: Hertfordshire
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Merc1,
A very good friend of mine has MS and has done for nearly 7 years. We nearly lost her twice when the muscles in her throat closed up.
MS takes on so many differant forms and people differ on their symptoms.
My friend is unable to take her kids to school in the morning as she has to take her time getting up and that is hard.
She only seems to have relapses when she has to go to hospital and get her drugs on a drip.
Sounds like you also are a great support to your friend and that is what is needed.
If you want some great information then go to the MS Society website...We do a fund raising cake break event each year to help raise money for more research.
Ali 
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