A bad day

[Polly]

4 weeks since diagnosis. 3 weeks since visit from specialist nurse, when it seemed there would be all sorts of support. 2 weeks since assessment clinic prior to referral to local services. Since then zilch. Dietician appt in 3 weeks time and nothing else. In this short time my husband’s legs have become much more wobbly and weak. He had quite a bad fall last week as he caught his foot on the step down into the garden. And another 2 falls since, including one today. I know I’m trying too hard to protect him and it’s not helping, as it’s making him want even more to do the things he usually does. I knew this was going to be hard, but at the moment I’m really struggling to know what to do.

[Polly]

Reading this again I apologise as I realise that many of you are coping with much worse problems. It’s just that it’s happened so quickly and seems to be developing so rapidly, I can’t believe that six months ago we were on holiday and walked miles every day. Yesterday a short walk at a garden centre exhausted him.

[Lynne K]

Hi Polly. It sounds like your husband needs a walker to help him avoid falls. Lynne

[Kayleigh]

Hi Polly,

Please don't feel like you need to apologise for your post. Many of us have been through what you and your husband are going through now. There is a lot to cope with and sometimes it's difficult to know where to turn for help and advice. Please don't hesitate to post on this forum as often as you would like to. This forum is a special place where people affected by MND try to support each other as much as possible - you are very welcome here and so please don't worry about sharing your thoughts with us.

Sorry to hear that your husband hasn't got an appointment through with an occupational therapist or physiotherapist yet.

It must be upsetting for you both that your husband is having some falls.

It's difficult to know what to advise because I think different health authorities have different systems concerning support that MND patients receive - but I have a few suggestions that might help.

Your husband should be assessed by an occupational therapist or physiotherapist and supplied with any walking aids he needs free of charge. I managed with a walking stick for a while but found that a rollator gave me much more stability. I purchased a rollator because it took a while to be seen by a physiotherapist and then I was supplied with one (so that I had one rollator to use upstairs and one for downstairs).

It sounds like your husband doesn't find accepting help an easy thing to do. So it might take time for him to come to terms with needing help. Accepting help will probably be a gradual process - but I expect he is very reassured knowing that you lovingly want to offer him help if he needs it.

Hopefully your husband will be open to the idea of using a walking stick or rollator- I was a bit stubborn about it at first, but I realised that using a walking aid was better than taking the risk of having a fall and spending time in a&e.

Depending on his mobility, your husband might get a referral to wheelchair services soon - but perhaps the specialist nurse has already explained how your local wheelchair services works regarding referrals?

As you husband has already been seen by a specialist nurse, perhaps give the nurse a call and explain that you are concerned about your husband, especially with him falling so much. The specialist nurse might be able to hurry things along concerning an appointment with a physiotherapist etc. Your local Regional Care Development Adviser should also be able to advise you and perhaps help with accessing local services more quickly.

I hope you and your husband get more support very soon.

Love
Kayleigh x

[Terry]

Hi Polly,

There's certainly no need to apologise for what you said.

I would phone Mnda Connect Monday to Friday between 9am to 5pm
You can call us direct on 0808 802 6262 or e-mail us at: [email protected].
and explain the situation, especially regarding falls and lack of support.

It does take a long time for things to get in place and probably the Mnda can help speed up the process.

Others have surgested that hubby is not keen on getting things to make him safer and this is quite normal. They not only make life safer but will allow him to live better.

Talking of living life better, hospices are normally good places to get help and support.

I used walking poles to start with.

Love Terry

[shrew]

Sorry that you had such a bad day. I worry about Mick falling, especially when I am not here. He too has had about 3. If we go any distance we take his wheelchair or the mobility scooter we bought. He cannot walk far and walks stiffly now

[Gillette]

Hi Polly,

First of all, I am sending you huge electronic hugs because I believe you need them. It is a frightening time for you both, especially so as you have been left waiting for all the services to kick in.

I agree with what Kayleigh said about ringing the specialist nurse. You may need to give them a nudge to get things moving: don't be afraid of asking for what you and your husband need.

As for apologising for your post, there really is no need. We are all here because of MND, we understand. Don't try to compare your problems with those of anyone else: just because it looks as though someone else is in a worse situation, it doesn't make your situation any less difficult.

[Doug Carpenter]

Hi Polly

Thanks for the update on your husband’s situation. Big hug!

I can only echo what’s been said already. Never worry about posting about the dark times. That’s one important role this forum fulfils. You’re among good friends who understand.

It sounds as though walking aids – stick, crutch, walker – are essential for safety now. Walkers are great, because you can sit and rest.

In my experience, guys like to “do” things and get frustrated when we can’t. The trick is to accept the challenge and work out ways of doing what you can do. My great fear at the moment is what is happening to my big garden. OK, I can’t cut hedges and fell trees any more, but I can sit and use long-handled tools, I can crawl around on my hands and knees and weed and sow. It’s just slow!

As far as external help is concerned. I’ve found a combination of specialist nurses, OTs, PTs and the MNDA to be a real Godsend. But you do have to chase people. Surprisingly, they don’t seems to mind. Probably thanks to the MNDA, MND seems high on people’s awareness scale. A number of times I’ve encountered system problems along the lines of: “Sorry, that’s the rules…… Oh, you have MND, don’t worry, we’ll bend them”. And things magically happen.

Thinking of you both.

Doug

[Mandy124]

Hi Polly,

I know it seems a long while for the appointments to see people but it is quite swift which is also good because hopefully it means that were you live has a good mnd support system which will make your lives easier, it took us to 8 weeks to see somebody and I know how that feels, you whole future lives have had bulldozer go through it so you have to give yourself time to breathe, I went into complete shutdown through shock not helped by my husband not wanting to tell the kids till he was ready.

It is such a hard job being a career to someone you love having to watch them which you seem to do all the time but it does get a little easier with time, your husband seems like mine but you have to look at it as a positive as being determined to doing things is a good trait
for him to have, not so easy on your nerves but it is good. My husband doesn't come on here but will read things if I show him things that are useful to him, I like to be aware of things that could be a future problem for us and what we can do about them so keep a close eye on this forum, everyone on here is wonderful so friendly and full of good advice and support.

On a one to one level career to career If I can be of any help or support I will try my best,

thinking of you both,

Mandy

[Polly]

Thank you everyone, you have given useful advice and support.

Mandy, my husband definitely sounds like yours! I want him to carry on and do things but I’d like him to pace himself, and not do so much that he exhausts himself. I know it’s a good thing that he’s determined to do as much as he can, but you are right, it’s very hard on the nerves!

There is progress though. My husband saw a lovely physio when he first had slurred speech. He has made sure that my husband has been referred to the specialist team. And our lovely GP is chasing up the occupational therapist.

I know it takes time for these things to be organised, but my priority has to be his safety. It would be awful if he had a bad fall and ended up with broken bones.

[Deb]

Hi Polly,

Firstly please dont say sorry for posting on here. It's the right place for advice and support, from people who really understand. The early days , when you are both reeling from the shock of diagnosis are overwhelming and it's hard to know what is best.

There has been lots of sound advice on here about who to contact for advice on here so I wont add to that although it sounds like you have good support. I really appreciate why your husband wants to keep active and I totally understand your concern about falls. Like many of us I resisted a wheelchair but once I had one I realised it gave me much more freedom to be out and about. Again I didn't want a power wheelchair in the house but now I can whizz round to check hubby has cleaned the kitchen and the state of my son's bedroom ( not great !!! )

Safety is obviously the most important thing but I think most of us have a few falls before we realise this. It's only human to want to keep going as we always have and I was given a hard talk about falls by the neurologist as the last thing we need is broken bones.

Take Care of yourself too,
Love Debbie x ( Deb )

[Polly]

Success! A call today from the community physio. She will visit next week along with an occupational therapist. It’s such a relief to know that local support is now forthcoming.

[Gillette]

Hi Polly,

That's great news! I'm pleased for you. I don't know if it's always so but my community OT told me she is my problem solver - and she certainly has been. I hope yours will be as useful.

[Terry]

Hi Polly,

It's nice to get some support, it can take a long time after diagnosis sometime.

Just hope that they are very useful people.

Love Terry

[Guest]

Hi Polly, it is Rajesh from India, An MND patient.