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Acceptance of condition

Dear MS Community,

A couple of years ago, my partner was diagnosed with Primary Progressive MS. He was told that he had probably had it around 10/15 years and judging by the prevalence of legions he shouldn’t be as well as he is/was…He hasn’t seen anybody since.

My question/discussion to the group is…as a carer/partner, how do you help someone come to terms with the condition? For example, he doesn’t walk very well, gets back ache then subsequent pain in legs etc and is very reluctant to use a stick. He gets worn out, anxious, withdrawn and ‘troubled’.

This condition is also affecting his bladder/bowel control and starting to restrict where he will go. It frightens him to death. He is an intensely private person and will not talk to a soul about it!!

TIA :slight_smile:

1 Like

Hi Tia, I`m not a carer but a caree!

So I hope you dont mind my butting in here!

I`ve had my disability for going on 20 years.

I was wrongly diagnosed with PPMS for several years and learned a lot about it.

I was troubled with mobility, bowel and bladder, spasticity etc, which progressed rapidly. I was needing a wheelchair part time within 2 years and have been a full time wheelie for about 15. I am hoisted for every transfer and have an spc.

I have spastic paraplegia…no cure…no treatment, just like PPMS!

Right how can I help?

I do think it is worse for a fella than a woman to be disabled…lots of ladies will be up in arms about me saying this, but I feel this way as it is the norm for fellas to be the strong one, the protector, the breadwinner etc. Apologies if anyone takes umbridge at this.

I found my way by accepting any help offered. When my legs gave up, I chose a wheelchair, cos it made my life so much easier, safer and better. Likewise with the catheter…no more accidents and charging around looking for disabled loos.

There`s only your man who can accept his limitations and do summat about what can and will help the situation.

We have loads of male members here who will tell you exactly the same.

Would he consider joining our merry band?

Life with MS or any severe condition can be enjoyable, if only everyone could see how.

love Pollxxx

1 Like

Tia,

As a bloke with MS I do understand a bit about this. I range from being obsessively stubborn (Bl**dy minded) through to a bit smarter by accepting appropriate (?) help and then to completely acquiescent and giving in.

My condition varies significantly quite rapidly, so my responses to offers of help also vary, the tough job my amazing wife and friends have is to try and work out when to push and when to back off. Massively difficult to judge.

As a caring partner I suggest that you try to nudge your partner by keeping an eye on the bigger picture. “if using a stick / rollator / wheelchair” means that you get to do more stuff together, there is a benefit to both of you. I personally loathe needing a wheelchair sometimes, but by getting on with it we can go to a garden centre together which makes my wife happy and is therefore worth any boyish feeling of indignity.

PS: regarding bowel management, I am a supremely uptight and repressed old git who finds talking about this stuff pretty tough. I did speak with my MS nurse and she introduced me to the Peristeen system, which for me ensures that I can plan to go out knowing that everything should be ok. Without it I would never want to be away from home or more than 20 seconds from a loo. The people I dealt with are very sympathetic and deal with this stuff all the time.

Good luck

Mick

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Hi

I suspect that there is partly a male/ female thing going in here, as both Poll and Mick have said.

Saying that though, I was horribly embarrassed to be using a stick originally. Then a crutch, then two crutches. And as for a wheelchair, I hated, absolutely hated to be seen in one for the first couple of years when I used it occasionally, and for at least the first year when I had to use it full time. I felt embarrassed and humiliated by it. Don’t ask me why, I’d never thought any less of people in wheelchairs before.

So as for ‘accepting’ the condition, I didn’t. Not for the first 10 years after diagnosis. And not even then properly for the first couple of years after I became more seriously, and more visibly, disabled.

I don’t know if there is a way to ‘help someone come to terms with the condition’. It’s a very personal thing, and for a private, even quite proud man, it is going to take a long time, and I dare say is something that ultimately he will have to discover on his own terms and in his own time.

The problem for you meanwhile, is that while he has MS, what he perhaps hasn’t taken note of is that you have to live with it too. And until he does ‘come to terms’, you are stuck too.

One of the most difficult things for a private person is the bowel and bladder issues. I was always the most private of people, I wouldn’t dream of discussing my bowels with anyone. It took years for me to discuss my bowels with my GP, let alone with my OH. These days I talk about it all, with virtually anyone. I have gone from intensely private over such matters, to out and proud. But, I don’t think anyone could have helped me to become more open. I just know that I’m happier now that I can talk about it.

Maybe one of the ways of helping him is to suggest he start reading some of the posts on here. He doesn’t have to join, or to post anything himself. It’s an open forum, so people can read posts without ever having to join in. If he later felt that he could, maybe then he could join. It’s a supportive network. And it’s possible that by reading other people’s experiences, he could find his own way to acceptance of his MS.

Sue

3 Likes

Hello Tia,

He is welcome to join us online - can you persuade him to join us?

Also - it seems, if you solve the immediate problems of bladder and mobility he will feel less distressed.

So GP appointment - referral to Continence Advisor - they ask you to keep a loo diary for a week and check for infections etc.,.

The Advisors can prescribe pads on the NHS free and have the delivery organise by your local District Nurse. Ask about this.

Also - just buy stuff online - like Spillproof Male Urinal - keep one in the car.

https://www.completecareshop.co.uk/toileting-aids/urinals-and-bed-pans/spillproof-male-urinal-view-large?gclid=CjwKEAjwl9DIBRCG_e3DwsKsizsSJADMmJ11a-lP4P_lvfYvJbi_Vr0fAPiRUhobZ8OvEhHF5DhsFBoCboXw_wcB

Tables: Detrusitol (tolterodine) - ask your GP

What is it used for?

  • Treating the symptoms of an overactive bladder, for example an increased need to pass urine (urinary frequency), uncontrollable urges to pass urine (urinary urgency) and involuntary leakage of urine (urinary incontinence).

For mobility - scooters or powerchair

Make an appointment with Wheelchair Services - I waited 12 weeks - but got two chairs: a manual and powerchair. These remain NHS property and they maintain them free.

See here http://www.virgincare.co.uk/

NHS will only give a powerchair for home use, if you can’t walk far, or have falls at home.

Obviously, you can buy these yourself if you want - but can be expensive.

Unless you buy a used powerchair or scooter online. There are powerchairs for £500, like Ottobock 400. A good outdoors chair which can go in the car using telescopic ramps etc.,. cost about £86.

Check on ebay.

Fay

References:

https://www.bladderandbowelfoundation.org/resources/specialist-services/

Just thought I`ll let you know

TIA means Thanks in Advance and not a persons name.

Her name is Singer.

Image result for thanks in advance smiley gif

1 Like

Hi Singer,

Try to invite your partner to scan through the threads here. He might just be interested to join. :slight_smile: