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Feeling well, but ................

My general health is good. I feel well and I’m not in pain. Sometimes I can’t quite believe this is happening to me. It’s ten years since I was referred to a neurologist and nine since my diagnosis, although I had symptoms going back a number of years, unexplained falls, clumsiness, tired all the time, and a few months of double vision thirteen years ago.

Nine years ago I could walk a reasonable distance at a reasonable speed, I could get up and down stairs, swim, drive, live independently. Now I’ve got dropped foot, I can’t lift my legs from the hip and struggle to get around at home on crutches, it’s wheelchair everywhere else. I can’t use cutlery, can’t make a meal, can’t carry anything, frequently drop things, basically I’m unable to live independently. I suffer from urge incontinence, even though I self catheterise, but we’re trying different meds to try to sort that.

Theres just me and my husband, we’ve no family and he’s nineteen years older than me and is my sole carer. He does this with good humour and without complaint, and I feel lucky and blessed. When I married an older man I expected to look after him in his old age, not have him spend his old age looking after me! One friend pointed out that it’s keeping him fit, so I’m doing him a favour!

He’s likely to need a knee replacement soon, and I worry how we’ll cope, in fact rather selfishly I worry how I’ll cope alone at home while he’s in hospital, and how, or even if, I’ll be able to visit him in hospital. How will we manage when he’s discharged.

Also, generally, as we age, and as I continue to deteriorate, I fear soon I won’t be able to walk at all, how will we manage. I’m 59 years old and he will soon be 78, although in his head he’s a lot younger! In my head I can turn cartwheels! But in reality I can’t even get up and down off the floor, never mind anything else.

I remain generally positive and upbeat. I go to a gym three times a week where I do chair based exercises, and with the assistance of instructors use some of the gym equipment. I pay for physio once a fortnight as this is not available on the NHS.

We’ve been refused any help with adapting our bungalow, so we’ve just paid thousands to have the front door altered and ramp constructed. We are hoping to have saved enough money by the new year to convert the bathroom to a wet room. The shower tray is fairly shallow, I’m managing at the moment, but at the rate I’m deteriorating, that will change sooner rather than later.

To those of you who’ve got to the end of this post, sorry for its length and thank you for reading it. I just felt the need to get it off my chest. I’m not going to ask anyone to predict how soon I will be unable to walk etc. I don’t think I want to know!

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If we could predict this stuff it would be a miracle. Whilst we all have miracles everyday,(mine was getting back in bed without falling over today) it sounds as if you and your husband are performing miracles.

I can’t give you any answers but sometimes just pouring your heart out helps.

I haven’t seen you on here before, forgive me if you are a regular but I wanted to say Welcome. You are amongst people who are suffering similar stuff. You can pour your heart out here you can get advice, sometimes even a joke or two. Never feel you can’t ask because we all suffer similar stuff. XXX Don

Thanks Don. I’ve been around on Everyday Living for a while, and spent a lot of time on the forums on the previous website when I was hungry for information and read every post. I’m over that now. I think I was rather obsessed then.

in ten years I’ve seen four different neurologists. The first labelled me Secondary Progressive based on the double vision which cleared up by itself. Given that my decline has been steady and that there have been no other identifiable relapses I doubted that diagnosis, and my most recent neurologist, an MS specialist believes it to be PPMS. In a way it was a relief to be told that.

As I said I do fear for the future, but I try not to dwell on it, we are trying to do as much as we can for as long as we can. We’re off for a weeks holiday soon and all the challenges that brings, but at least we get to jump the queue at the airport. :slight_smile:

xx xx

Hi Flowerpot. Don’s right, it does help at times too poor your heart out. I understand your worries about care as we’re in a similar position with looking after my dad who has MND. My mum is looking after him but has arthritis in her arms and can’t consider getting outside help as she believes that she married him in sickness and health etc so he’s her responsibility.

I can’t help much as I have PPMS, but as a retired nurse I feel I should be able to do something, I looked after enough disabled and elderly people, why can’t I care for my dad??? It’s all very frustrating and worrying. I’m single with a daughter in college and I want her to go to university and not worry about me too but I know she wonders how I’ll manage when she does. I think we all have concerns but I still don’t know the answers. All I can say is that you’re very lucky to have a husband who loves you.

We may not always be able to help but sometimes it’s nice knowing you’re not on your own. What’s good about a forum such as this is that no matter what you’re struggling with there’s usually someone who has been there or at least has some understanding of what you’re going through. Your husband is a lucky man too as you obviously have a lot of love and respect for him.

Take care

Cath x

Hi flowerpot, I did read it to the end and my heart goes out to you. You’re dealing with a lot!

I don’t understand why you’re having to do the adaptations to your house yourselves. Usually local authority will pay for these through OT department… unless you’ve loads of savings… but I gather that you haven’t as you say you have to save for the wet room.

When your husband is in hospital, and when recovering, you should be able to get a care package through social services. I suggest you try and get a social worker now …sooner rather than later. You could also ask them about why you are having to pay for adaptations.

You should be able to find the number of local social services on internet. Give them a call and request to see a social worker.

Glad you came on here and hope you do feel better for getting it off your chest. You are very welcome here and we are a supportive bunch… bit of a lifesaver being able to come on here really. Don’t know how I’d manage without it.

All the best to you and your husband. None of us ever know what is around the corner. I was thinking today that it’s nearly 9 years ago that I first got bad symptoms and ended up at GP’s in tears, so tired I couldn’t work… had absolutely no idea what I had in store!!!

Take care,

Pat xx

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Thanks Pat. We’ve been means tested and though we’ve not much in savings we’ve been told based on our joint income no help is available. We both have occupational pensions, I have just gone from DLA to PIP and my husband has his old age pension. We’re not poor, but the means testing didn’t take into account any outgoings. I have mixed feelings about outside help, though I think my husband could do with a break, we are glad we’re coping without outside interference.

I do feel better for having shared my fears and feelings.

As for the future, we will cross those bridges when we get to them, but I’m grateful for the support and advice on this forum.

X

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