MSA Meeting

[Nichod100]

My husband and I are attending the MSA meeting tomorrow at Stanlake . It’s the first time we have attended and I’m looking forward to it although I do feel a bit apprehensive . We have not met other sufferers and their families before . I am so looking forward to having the opportunity and the support of others .

[FredaE]

You will be fine. It is one of the few ways patients an meet fellow sufferers. It was not until over a year after my husband died that I met anyone who had a friend or elation with MA. A very rare breed which can be very isolating. Good luck tomorrow

[Yanno]

Hello there,

There’s every reason to look forward and very little reason to be apprehensive. If it’s anything like our group, it will be positive and upbeat looking at solutions not problems.

Hopefully you will be so relieved to meet others with similar issues who understand what it’s like for you.

Enjoy. Take care, Ian

[Yanno in reply to Yanno]

By the way, I should have said; don’t forget to tell everyone at the support group about this community on HealthUnlocked.

Ian

[Nichod100 in reply to Yanno]

Thank you and I will 😜

[chester2107]

hello we went to the last one with my dad

everyone was really friendly, the nurse jill was very helpful and answered a lot of questions

we aren’t attending this time as my dad can’t talk very well , so finds it difficult

my mum chatted to some people as did i and my sister in law

maybe we can persuade him to go again sometime

elaine xx

[chester2107]

hi peter such a shame we aren’t going today, would have been nice to have met you , let me know how it goes

sending love xx

[Nichod100]

Thank you for replying , and what a lovely reply . I care for my husband but at the moment have to work full time as he cannot work or drive anymore . He is not too bad at the moment , his walking and speech are the worst things that are effected . I am a carer giver with Home Instead and have 11 clients at the moment . I love my work but I do wonder if it sometimes is all a little too close to home . It is quite emotionally draining as I care too much for my clients , you become close to them as you are part of their lives and it is hard not to take them into your hearts . ( not all though I am not an angel ) 😜 My husband started symptoms nearly two years ago . Last December he was diagnosed , he hasn’t worked for a year . He has deteriorated quite a lot and life is just not the same . He is such a lovely man and I love him with all my heart . It is so heart breaking to see him change before my eyes . We are restricted as to what we can do and where we go . I do feel I am a carer and less of a wife . I know I am angry , I’m not sure at what , scared , sad and some days I have to fight the tears all day . It feels like we are looking into a big black hole and I know we’re being pulled in and there is not a damn thing I can do to stop it . We have the house on the market as financially we are struggling . ESA have just stepped up and are paying the higher level and have back dated it . This runs out in December though . We have had our PIP assessment and have another month to wait to hear . Fingers crossed this comes up trumps . I want to spend more quality time with Richard and try to enjoy life more instead of feeling like we are just existing . If I am on a weekend on I work about 44 hours a week . The more I work the more Richard is alone and this means he’s very isolated and obviously he gets down . By the way rest -bite Care is available if you qualify for funding . You get 4 weeks a year . If you have to pay of course you can have as much as you like . If you have a chance before this afternoon I would love to hear more about you and your wife and how MSA is effecting you both . I am looking forward to meeting you both later .

[chester2107]

hi peter are you the gentleman that spoke to my mum betty in boots in henley?

i just wondered as she was trying to send you info for the meeting ?

elaine