Follow up visit

[Doggymama]

Hello, My husband had his follow up visit with the MND specialist, who confirmed the first Neurologist's diagnosis of ALS/MND. Feels like he has been diagnosed all over again. The MND care co-coordinator is coming for a home visit next week and is arranging for OT and the welfare officer to contact us. Riluzole is starting next week along with vitamin supplements and quinine.

We are now considering what to do with home adaptations and how on earth we are going to self fund an extension for downstairs bathroom and wet room. Apparently DFG will be nigh on impossible to get as I still work and my husband has state pension income. We are waiting for OT to come out but my thoughts are stair lift and converting existing bathroom to wet room may not be future proof and we will end up further down the line in the same predicament. Life certainly has thrown us a curve ball and feel completely overwhelmed with it all. One good thing is that we seem to have an excellent support system in place already with the MND care clinic at the RVI in Newcastle which has been quite reassuring and we don't feel so alone with this anymore.

[LindaB]

Doggymama sorry to hear confirmed diagnosis. Good to hear you have support system already in place.
It sure is a curve ball....take care😘

[Lynne K]

Doggymama sorry about the diagnosis. I have doubts about a stair lift because eventually (an unknown amount of time) it would not be suitable. Everything on the ground floor is more future proofed or a lift if you have the space and the money for that xx

[Heather R]

Doggymama The unpredictability of mnd is so difficult in preparing for the future. I was diagnosed bulbar onset in July 2019, and the OT was encouraging me to look at preparations for immobility from then. Therefore so much of my time since then has been taken up with this in mind, whereas in fact although my bulbar symptoms have progressed, my main problem in walking is to do with my lungs getting very breathless rather than my legs not working . But I know people can progress so much faster in their legs and arms. I think my council gives a certain amount of grant to everyone who needs, regardless of income, but I may be wrong. Anyway OT best advisor. I know I was advised against stair lift as well, which had been my first thought . Good luck with it all, and keep us posted with how you get on xx

[Bowler]

Doggymama sounds like your support group is kicking in which is good news although it can become quite overwhelming at first. It might be useful to make a list of your current concerns so you can get what you want out of the coming visits.

Regarding home adaptations it would be worth talking with the OT about through floor lifts as they can sometimes offer a cheaper alternative to extensions. A few members have them installed so would be better placed to offer comments. The thing to keep in mind with any adaptations is that in the current climate the whole process can take many months up to a year.

when you feel ready it’s also worth talking with the association benefits team who will be able to advise what you are entitled to.

Finally if you haven’t already talked to the connect team about the possibility of being allocated an Association Visitor ( AV) it would be worth exploring what an AV can offer and if you think it would suit your circumstances.

[Doggymama]

Thank you for your replies, All seems to have hit me today like a ton of bricks and can't stop crying. Going to have to pull myself together xx

[Rosemary6NT]

Thank you for your replies, All seems to have hit me today like a ton of bricks and can't stop crying. Going to have to pull myself together xx

I feel for you, it is completely overwhelming at first. All good advice above. I don’t know how things are in Newcastle but down in Milton Keynes it will have taken us at least a year to get anyone to come and build a wet room, and we are still waiting. Crazy times. Best wishes x

[MNDConnect]

Hi Doggymama

When thinking about stairlifts, it's worth considering rentals rather than purchase. Sometimes people are unaware that stairlift companies rent stairlifts as well as sell them. Sometimes with MND, people's needs change and the stairlift is only a short-term option. Renting one means that the company will remove the stairlift when it is no longer needed. We often get calls from people who have purchased a stairlift but the stairlift company will only offer to buy it back at a tiny fraction of the cost that the stairlift was bought for.

We always suggest the involvement of an occupational therapist who can assess the suitability of a stairlift and provide advice on adaptations.

We do have a grant which can be used towards the cost of a stairlift or adaptations. Our funding is limited so it's likely we'd only be able to provide a small contribution towards the cost but it's certainly worth bearing in mind. The application would need to be completed by an occupational therapist and we don't provide retrospective funding. You can find out more on our website here https://www.mndassociation.org/suppo...ople-with-mnd/

Please do give us a call for anything on 0808 802 6262 or email us at [email protected]. We are here to support you in any way that we can.

Best Wishes

Rachel
MND Connect Adviser

[PeterPan]

Doggymama Sorry to read about the confirmed diagnosis. Lots of good advice here. My top tip at this stage would be to stop trying to solve all the future problems while you’re in the first stage and getting over the immediate shock. You’ll be able to think more clearly in a few days or weeks.

As MND Connect suggested, the option of a rented stair lift was what we opted for. Depends on the type of MND (mine is ‘top down’ and I can still walk and stagger around). The owner of our stair lift company reckoned we’d never have to take the expensive option of getting a through the floor lift - he’s seen many more cases of MND than me!

You don’t necessarily have to have a wet room. We had our upstairs bathroom gutted and installed a large shower tray that’s been sunk into the floor to be perfectly level. On the long side there’s a two piece sliding glass shower screen. A shower wheelchair fits inside easily.

A few ideas there - but take your time. Best wishes.

[Doggymama]

Thank you for your replies I have just panicked I think. His has started with his arms, right arm fairly useless and left arm is heading that way. His legs are stiff but he can walk, legs are not weak yet just stiff and a bit unsteady. We will wait to hear from the Occupational therapist, if we can go down the stair lift and convert our bathroom, would be so much more achievable. The care-coordinator said she could look into renting the stair lift for us. I thought that this may be a temporary measure but perhaps not. Thanks again.

[MNDConnect]

Doggymama It's completely understandable to feel panicked. You've suddenly got all of these things to thing about and information being thrown at you whilst also trying to come to terms with the diagnosis.

Try to deal with one thing at a time. Maybe make a list of things that you need to do or that you are concerned about. We're always happy to then go over the list with you. There's no urgent need to try to do everything at once. This is all very new and completely overwhelming but we're all here to help you.

Best Wishes

Rachel
MND Connect Adviser

[Mary C]

Doggymama
So sorry, to hear about your husbands diagnosis.
As people have suggested ,you need time to let it sink in.
Maybe get a journal and start jotting down names of health professionals and contact numbers .

For future…I costed new through floor lifts and they were around £14.000.I opted for a self employed chap who reconditions the lifts( he previously was employed as a lift fitter) and fits them with a 12 month guaranteed for less than half the price.I sought references first and over 12 months later the through floor lift still enables me to access upstairs.The OT advised me to get the biggest lift in case the wheelchair I needed ends up being a large powered type.He accepts work all over the country and will buy back when lift no longer required.We had savings so paid for lift as wouldn’t qualify for council funding.

Pre the through floor lift I had a second hand stair lift but after a few months I couldn’t use it.
So glad you have health team to support you as it’s important to know who you can both call on when needed.

We ended up paying for our bathroom to be made into a wet room …again OT should advise you about what’s needed.

Take It steady ,as it can overwhelm you.
Best wishes
Mary x

[matthew55]

Try and walk before you run and think only about tomorrow. Forward planning is all well and good but a lot of things have very limited use. Enjoy being together and bugger the world. 🌍😁😘😍xx

[Deb]

Hi Doggymama . I'm so very sorry to hear your husband has had his diagnosis confirmed.

The early days are so shocking and the well meaning support can be overwheming. I couldn't believe it was me they were discussing and what I'd need in the future. Lovely friends kept calling and understandably didn't know what to say.

We all cope differently and being prepared is important but we were able to go to Spain for a month to come to terms with things together. Of course, not everyone has this option and some people welcome and need professional help straightaway.

As others have said try to take a little time to process things if you can. I needed time to accept that I had MND before I could make any decisions about stair lifts, wet rooms etc.

Take care of yourself at this time,
Sending hugs,
Love Debbie x

[Ellie]

Doggymama I'm glad your husband is being well supported by the team at the RVI and, by default you're also benefitting by him having this support.

The problem with ALS is the huge variability in progression rates and how it affects one's body. I got 10 years use from my stair lift, others might not get 10 months or even 10 weeks from it, which doesn't help you one bit I know, but that's the reality. xx