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Worried about my Mum...

Hi,

I’m am new to the forum, although my Mum has had a diagnosis of MS for 26 years now… i feel i need to reach out as i am worried for her future.

It started out as relapse/remitting but I’m sure it is now secondary progressive (and has been for a number of years) but this is just my opinion from my research!.. The reason i sound so vague is she has avoided any sort of medical intevention since diagnosis and opted for alternative therapies such as; homeopathy, aromatheraphy and diet etc. Firstly, I am not suggesting there is anything wrong with this and am an advocate of ‘complimentory’ therapies but I am concerned that she has no actual medical care/neurologist input and hasn’t had for a long time.

I was 11 years old when she received her diagnosis (I’m now 37 and she is 57) and have watched her battle various symptoms from double vision, coordination difficulties, chronic fatigue and pain and tingling in her limbs to burning sensations on her skin etc… She has also been affected cognitively, and i feel as though her personality has dramatically changed over the last 15 years, so much so that my relationship with her has completely changed… which saddens me deeply. This is probably why i have not explored anything like posting on a forum up until now.

Her outlook and attitude to her MS has always been very positive and admirable but i believe it is now to her detriment. Her husband is effectively her carer, along with my 27 year old brother (who will not leave home because ‘I cant leave Mum’) They have no support, she has no social life and doesn’t understand why we are reluctant to go for days out. Physically she is able to walk but fatigue, balance and coordination difficulties mean after a very short walk (normally out of the carpark) she begins to tremble and fatigue sets in which she passes off as just wanting to go and sit down and grab a drink… if we don’t its only a matter of time before she’ll stumble and fall… and then blame it on her shoes (again!!!)

I don’t know what to do…my step father has asked me to talk with her as he doesn’t no what to do…and she pretends everything is fine.

I really feel like i need to take her back to her GP and get some sort of input from somewhere and just get her back in ‘the system’?? Any thoughts, advise, support… anything! would be greatly appreciated :slight_smile:

Thanks for taking the time to read!

Marie

There’s a difference between (a) having a positive attitude to dealing with MS and its predations and (b) pretending that you aren’t disabled when you are, while silently obliging your nearest and dearest to collude in this fiction to the extent that one of your adult children is stuck with you on planet invalid, and your spouse is at his wits’ end.

MS is a filtered word, no two ways about it, and it affects the whole family, always. Family support is wonderful and necessary. But when things are kept within the family entirely, people can get locked into a closed system that isn’t very healthy for anyone. Fresh perspectives and new ideas do not tend flourish in such an environment, and neither do openness and honesty. I think you are quite right to want to let a bit of fresh air in.

It’s a tricky one, but I think that you are definitely on the right track with the GP idea as a starting point. If you were able in due course to persuade your mum to try counselling, I think that might really help her (but maybe you can imagine all too well how she would respond to that idea!) Counselling can be tremendously helpful in nudging fixed thought processes out of their rut, and helping a person to get a fresh perspective on things. But maybe that’s for the future. Just gently taking one step at a time to try to edge your mum towards getting some help from outside the family circle would be a help for her and for you all. Change hurts, though, even positive change. So you will probably meet with resistance! But I hope that your care and perseverance will pay off over time.

Good luck.

Alison

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Marie

does your mum know others with ms.

how about visiting a local ms therapy centre where complimentary therapies may be on offer, plus the chance to meet other msers.

things like using a chair to get out and about may be something to look at & it may be other msers can point the benefits of the freedom of using a chair.

gp interaction sounds like a good approach but it may need someone not too close to point out the benefits of other resources.

regards

neil

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Thank you both for your responses…

They both make a lot of sense and I appreciate you taking the time to help :slight_smile:

Alison - I wish i’d articulated myself more like your response when talking to my mum about things recently! It was during this conversation that I suggested to her maybe using a chair during some outings… I was told in no uncertain terms that “I will NEVER use a Wheelchair!!”

I will keep on and will look into groups in her area as i think if she had others around her, that would be a start - she spends a lot of time on her own (I live a 3 hour car journey away, along with the rest of her family which doesn’t help)

Thanks again

Marie

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Marie

Reading your post just made me cry…I’m in the same position as you and we are exactly the same age too…I don’t have the answer as i’m trying to work it out myself…but just wanted you to know you’re not on your own xxxx maybe you could take your mum to see her MS nurse and discuss new ideas and groups available…im considering doing that xx much love