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One our own

Hi,

My wife was recently diagnosed with MS, (not sure which type as still awaiting results came out of hospital on 10th May after ten days). She is in a pretty bad way I do everything for her washing cooking (well try to lol) as well as working long hours. We have two kids one of 14 and one of 19 the older one is great and helps all the time. Since I brought my wife home we have been on our own without any contact whatsoever from the MS nurses, we have contacted them on so many occasions and been told we are still waiting for a referal letter? My wife has fallen on numerous occasions and apparently has now been put on a list as a priority! Since I have been home I have installed hand rails brought her a wheelchair (so expensive) and adapted the bathroom best I can, must admit I am struggling a bit with money etc. as I cant put in the overtime I used to due to trying to spend as much time at home as I can with my wife. With the kids at school and college she is on her own a fair bit which I am finding increasingly hard to deal with as I am worrying sick at work. The first week home family and firends were around almost 24/7 almost acting like someone had died now a month or so later we don’t see anyone, my parents visited the other day and she was having a really good day up and about (on sticks) laughing and acting her old self, they looked at me as if I had been making up how bad she had been. Neigbours also give us funny looks when I take her out in the wheelchair as if to say “well I saw her standing up fine the other day” I don’t think there is anything out there that really can prepare you for the ups and downs you go through when living with someone who has MS. Just having a rant and wanted to find out how other peoples family have acted since being diagnosed.

Regards

Londshanks

Hi there

It has been quite a few years since my wife was diagnosed with MS and from what I remember we had differeing reactions from both sides and it wouldn’t be helpful for me to go into the details.

On a practical side I can offer some advice. Find the number for your local social services and phone them. They can help guide you to any benefit entitlements and did give us a grant to alter our bathroom.

If you haven’t been contacted by the MS Nurses etc fairly soon you could try the rehab department. They can access free wheelchairs and other adaptive aids to help your wife lead as normal a life as possible.

The people around will need to be educated on MS and will come to learn that symptoms can vary greatly on a daily basis.

The MS Society does produce some good literature on MS that is freely available via download or through your local branch - it is generally free of charge.

Otherwise welcome to ‘the club’.

Hi, I admire the way you do your best to help your wife.

Obviously you need to work, but have you though about Direct Payments? I started on this a year ago. Once up and running, the system is brilliant.

My hubby was my full time arer for 11 years. Then as my needs increased, it was obvious hubby needed a rest. I now have 3 other carers who come in daily to help me with my personal care, take me out and it`s great.

If you`d like to ask me anything about the set up, please do.

luv Pollx

No I don’t think you can prepare yourself for such a life-changing experience. I hope by now the MS nurses have been in touch. If not email your MP and Copy to your NHS Trust. If nothing else it might help to have another rant. You have done a lot of work in your home that should’ve been done by NHS (after occupational therapy assessment) which I know you needed to do for your wife’s safety. As for support my husband (the carer) and I (the MSer) have found ourselves pretty much alone. People struggle to understand this illness - as do we! Perhaps you could print of some of the ‘MS Essentials’ leaflets that explain different aspects of the illness to family and close friends? You could also try calling the MS helpline for support when your feeling overwhelmed. It’s really tough and you’re doing an amazing job. Hopefully your wife will go into remission and you can have many years of good health. I’m not doing so well now but I had many healthy years and with new drugs available now your wife’s chances are better than in the past. All the very best to you both Karen

Hi I will pm You back in a bit let me read all posts and get my arse onto s comp n not phone Mike

Hi Sorry I haven’t forgot the info Will sort it Mike

Hi Lordshanks I have MS and i know how hard it can be for your partner/family to see the change to dx. As a career it is tough. As a career trying o hold down a job it is harder- please find enclosed a series of links for info http://www.dls.org.uk/advice/factsheet/welfare_benefits/filling_in_DLA_forms/Filling%20in%20DLA%20forms%20Factsheet.pdf http://www.mssociety.org.uk/sites/default/files/Documents/Essentials/Adaptations%20and%20your%20home%20(MS%20Essentials%2027)%20ES27.1010%20-%20web.pdf http://www.benefitsnow.co.uk/esa/rates.asp http://www.disabilityrightsuk.org/f60.htm http://www.mssociety.org.uk/sites/default/files/Documents/Essentials/Benefits%20and%20MS%20%20(MS%20Essentials%2009)%20ES09.0811%20-%20web.pdf I know there is loads there. But it a starter as some of the docs have links in links. Good luck to you. Mike