Housing matters

[nunhead_man]

Hi all.

I have probably said all of this somewhere here already, but poking around Right Move and Zoopla trying to work out where we can afford and trying to work out whether the places we can afford are big enough over the last couple of weekends has brought all this rather sharply into focus.

So, to rehearse the argument OT and architect say we need to move house - existing place purchased two years before diagnosis (we are owner occupiers) has too small plot area / room sizes - I'm really depressed about it - that's depressed of the repressed anger sort.

Building works on existing place cannot achieve enough space if I end up in a powered wheel chair and we do not have that money anyway.

We need to move in such a way that transaction costs (stamp duty etc) plus any costs of works going in have to come out of equity in existing house - so way from the community we know and mostly love.

I'm developing slowly - have 50% of left arm and 90% of right arm remaining plus leg fasciculations almost 5 years after losing pinch grip in left hand.

Question to the group - is implied assumption by OT that I will end up in a big powered wheelchair correct enough to drive this move?

[Barry52]

Hi Andy,

I fully understand your dilemma as I went through the same process 7 years ago, albeit probably too early in my case. We had our dream retirement house in the city centre when I was diagnosed age 59 and intending to retire at 60. We could have moved from our 3 storey town house to the suburbs but that would have been a compromise we were not pleased with so we moved to a market town nearby where we could have a larger house close to all the conveniences and money left over to pay for the conversion work.

Nobody can predict the rate of progression with MND and with hindsight I could have had 5 more years in our dream home. I understand that this may sound crass to people with a fast progression MND but whatever form the disease presents, it still proves a challenge.

I am now at the point where I need a wheelchair outside and probably soon indoors so the decisions we made earlier have proved to be wise. What I would advise Andy is follow your own instinct and choose somewhere that offers you all the facilities i.e. transport networks, shops and entertainment and then find the ideal house. Websites are useful for narrowing down your search but they don’t give you a feel for the area. I hope I am not sounding like I am teaching “grandma to suck eggs “ but I have moved home 6 times in 25 years (always one step ahead of the bailiff lol).

I wish you well in your search and remember that any alterations to your new home to aid disability are vat exempt.

Barry

[Ellie]

The only inevitable event for everyone on this planet is death - the when and how is the great unknown, just like one's rate of progression.

There is a man with MND in Ireland who was diagnosed 40+ years ago and it never spread beyond his arms.

Andy, what about having an EMG on your legs? That way you would get an idea if your legs are showing damage - obvs you should only have the test if you're prepared to hear all possible outcomes...

Real dilemma re your house, I sympathise totally.

Love Ellie.

[nunhead_man]

Good evening

And thank you both.

I will ask my neuro team for a check of my leg muscles the next time again see them in September or perhaps even when I go in later this week to see the physios to try and work why my hip hurts so much.

went through the same process 7 years ago, albeit probably too early in my case. We had our dream retirement house in the city centre when I was diagnosed age 59 and intending to retire at 60. We could have moved from our 3 storey town house to the suburbs but that would have been a compromise we were not pleased with so we moved to a market town nearby where we could have a larger house close to all the conveniences and money left over to pay for the conversion work

And also thank you for this Barry as we also have a dream retirement house, although being in central south London I suspect our options for suburbs to market towns are a bit different to yours - we are really struggling to work out where we want to be as we are where we want to be at the moment, apart from the MND that is!

Warmly

[nunhead_man]

Good evening,

A bit of an update as I have been cheered up by having sorted our the spectre of heart trouble hanging over my head since I was stopped starting a drug trial in May 2019. At that time the bloke who was doing the MOT prior to accepting me for the trial almost came running in saying that the computer-generated ECG said I had had a heart attack!

Given I am still riding my bicycle about hundred miles a week and have had no pain and breathlessness, a swollen legs, et cetera, et cetera this seemed quite ridiculous at the time, but it did get me worried.

So I went to the King's Cardiac lot yesterday who did another computer-generated ECG before my appointment rather than doing an echo and the senior sidekick pointed out that my trace had what he called non-pathological Q waves and no other signs of difficulty with my heart, including a completely normal listen plus white coat induced higher blood pressure than usual.

So he says, as far as he can see there is nothing wrong although he has put me in for an Echo, just in case and booked me in for an appointment in 3 months time just to follow me up although the chap I saw will be a consultant himself by then it seems.

I feel a rather rude email coming onto the nurse practitioner who told me I had had a heart attack on the basis of the computer trace and for this reason, and because I am using a Nippy for my sleep apnoea, blew me out of a clinical trial that might have done me some good.

On the housing front we are now aiming to move in the early part of next year, given the speed at which I am are developing although we are present having a conversation about what I will need if I lose more of my arm function.

We have almost given up looking down the railway line that runs south from where we are because we cannot find anywhere sensible to buy at the price we can afford so options wide open as we do not really have another place that we would call anything like one where we have lots of roots.

Strangely we seem to have lit on what seems to be a cross between a village and a town close by where the MND Association holds its meetings - this is near East Midlands airport. So does anybody know how good Nottingham hospital is in looking after its MND people?

Another possibility is a bit further north, where we have our yoga hub - this is around Bingley in Yorkshire. Although we have not worked out where the nearest MND care centre might be to that

Any help the panel can give on these 2 areas will be helpful

Warmly

[Barry52]

Hi Andy,

I am pleased you have been ruled out of any heart disease since dealing with MND is enough.

QMC hospital in Nottingham has a care centre for MND as has Sheffield if you move further north. Should you choose the Nottinghamshire location we will give you a warm welcome.

Best wishes,
Barry

[miranda]

If you come further south to Northampton, the East Midlands airport is about an hour up the M1. We are under the John Radcliffe MND care centre in Oxford (Prof Talbot and Prof Turner). Also MNDA head office is on Northampton. House prices are probably below average I think. Btw good news about you heart.