Relationship and MS

I’ve got secondary progressive. Use FES and love driving. BUT husband loves walking up to 12 miles at a go. Every day it’s a massive problem of what to do (we’re retired) we drive somewhere and he goes walking and I go ???
Don’t get me wrong , I appreciate how he feels but I can’t see a way around it. I’ve got a scooter but everywhere isn’t accessible. Any ideas/views?

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Kat
this is one of those MS impacts that needs some serious compromise and a bit of creative thinking. I can only tell you how my wife and I try to work things out. The only perfect solution (the 2 of you walking out as before) is no longer an option. Therefore our ‘plan B’ consists of: 1 having a robust off road scooter, careful route planning and being adaptable if a route is impassable. 2 I encourage my wife to go for “regular” walks with “regular bi-peds” this enables her to go at her pace and ability without worrying if I can get through. It also enables me not to feel guilty about restricting her. I hope that you and your husband find a way to manage your best time together.
All the best
Mick

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Thank you so much Mick. It’s really heartening to know that someone else recognises my situation (obviously I’d rather there wasn’t someone in my situation/ MS didn’t exist)
Can you tell me what bi-peds are?

Kathryn :blush:

You are welcome. “Bi-ped” is just my flippant term for regular folk with 2 fully functioning legs and feet. I apologise for my lack of clarity.

Most of the walks we do are successful but occasionally can turn into a nightmare. So we have to be lucky sometimes but the majority of the time well worth the effort.
I hope you can find the right way for you both.
Mick

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Hello @Kat64
I’ve got RRMS since 2001.
I did have a fes but I returned it when I wasn’t using it over lockdown, I used to trip over the wires anyway and preferred not wearing it tbh; at least one less device rental fee for the NHS now I suppose.
The last I drove a car was in 1999, the year before I temporarily lost vision in one eye, due to optic neuritis.
I used to love walking when my MS was quiescent, 12 miles is a bit too much but half that I could probably do. Nowadays however, I’m limited to a few hundred yards at best.
Would swimming, if not walking, be an option you and hubby could both do? I know swimming is a lot less physically demanding for us MSers than walking.
Hope you find an activity you both can do.
Best,
JP

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Thank you for this. It’s what we aim for in this household too.

Hello @muchthesamemuchness
Thank you for your kind words. Yes swimming would be an excellent idea. I go to an MS gym once a week but I’m sure if I could go swimming once a week as well than that would be good for our relationship. I will definately try and work on sorting it out…
I said we were both retired, although he is 67 and I’m 59 so I’m not drawing a state pension yet .

Best wishes,
Kathryn

Have you considered getting an electric trike? There are off road versions available at Jorvik Trikes and should make short work of rough ground. I am sure other makes are available, but might be worth checking out.

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Thanks @whammel . Paid £1600 for the Li-Tech Marathon which is great. Think that’s my financial limit now. :blush:

Fair point. It can be an expensive business this MS lark.

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It’s a total pisser, isn’t it? We used to go on lovely walking holidays in the UK and France; it was our thing. Now it isn’t. Fortunately, Mr Alison100 loves to walk on his own and also has friends he goes walking with and on walking holidays with, and he just does more of that now. I can still walk a bit, and we do short walks locally as often has we can, but it’s not remotely a proper walk for him, ambling along at my pace. It’s lovely that we can do that together (as you two can with the help of the FES and scooter, no doubt), but it would drive Mr Alison100 up the wall if he didn’t get to do proper walks too, and I expect your OH is the same. It seems to me that it isn’t a ‘compromise’ sort of situation. My mobility constraints are non-negotiable, and I expect yours are too. If you can together find a way of him doing proper walks in a way that leaves neither of you feeling bad about it, that’s probably as good as it gets.

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OMG! Your situation is a total mirror of mine! The ambling thing is spot on, I’m so aware of it.
It’s so refreshing to read it like it is. There isn’t a compromise and yes, our mobility constraints are non-negotiable. Love that you point out that it’s probably as good as it gets, such a relief to “hear” someone else facing the facts. Not in a defeated way but in a head on dealing with the situation.
I constantly try to find ways around everything but there comes a point when I think “actually, this is it. Just stop trying to fit a square peg in a round hole”
I’m working with my limitation’s not trying to achieve the impossible.
Thank you for your message it’s given me clarity. I’m feeling empowered ! :blush::clap:

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Good point. For me sometimes the “compromise” is that I don’t go but Mrs Mogace goes for a proper walk with other non MS affected folk. Sometimes when I do join a group walk and then have to turn back or reroute to accommodate my (or scooter) limitations I feel worse than if Id stayed in. As you say a total pi$$er.

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There are fine lines between “fighting / adapting / accepting” After 30 + years sometimes I get it right and sometimes wrong. But my success rate has improved even if success means me saying “I can’t do that” My flippant & humble suggestion is “be lucky and use your energy wisely / choose the right fight and the right way to fight”
Mick

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Absolutely. Those situations can just remind me of the gulf between my capabilities and those of normal people, and I can do without that, quite honestly.

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Me and mine used to go on lovely walking hols, and I can’t do that any more, I do really miss it. It’s really helpful to hear other people’s stories. I’m interested in the trike idea, I hadn’t thought of that. Is it easy to use? And good over rough ground? Thanks for any info

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Working within your limitations but without trying to achieve the impossible sounds like a great philosophy. You’ve got it in a nutshell right there.

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Depending on where you are but it might be worth checking out Wheelchair and Mobility scooter friendly’ walks. There are a few websites that list a range of such walks similarly some cycle routes might be possible. We have a long distance cycle path near us ( no idea if I’m supposed to use a scooter on it but no one has complained). Forest paths can be ok as well as can e.g RSPB reserves. I’ve not yet done it but we have vague plans to do a longer walk on rough(ish) terrain for which I would hire an all terrain scooter. Something called a ‘Tramper’ seems to be available for hire in various places - including Forestry Commission centres but there are other all terrain scooters and hire centres.

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I find it really helpful too. Melancholy, in a way, to read that these problems are shared among us, but also comforting. One feels less alone with it, knowing that others are in their version of the same boat.

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In my experience a 3 wheeler can be more manoeuvrable but is definitely less stable than a 4 wheeler. I suggest you try before you buy.
Mick

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