Feeling guilty.

[Tallguy101]

Hi all, basically I sometimes feel guilty because my partner works v.long hours, to make up for me having to retire 3 years ago. Also she would love to go away on holiday and whilst I could go I'm aware that because of how I am, we couldn't do much together in the shape of days out or even shopping trips.We haven't been away since 2017, a few days away in Cornwall. I use a four wheeler walker outside now. Any thoughts?

[Ginger1]

Would you benefit from a wheelchair? I know it's not a nice thought & is very hard to accept but you would be able to get out further and your fatigue wouldn't be as bad as you are sat down. If money is an issue, try big charities. I don't know where you are but International Aid & Sue Ryder both had them & I think I saw one in Cancer research. Good luck.

[Tallguy101 in reply to Ginger1]

Hi Ginger1, thanks for your kind thoughts. Yes I have considered a wheelchair for holidays but then again she would feel compelled to help me pushing it etc... But I guess there is no alternative. It's just the next stage in this awful disease. Maybe I'll feel better if I just do it, at least we can go on holiday together. I would only use it then and not all the time I don't want to start to rely on it.

[paul456]

Hello Tall

Never feel guilty my friend if it was the other way round I’m sure you would put the hours in this decease is bad enough without feeling guilty for having it.

Do your best to have some sort of holiday it will do you both good, if the mind is in a good place it helps with the physical side 👍🏻

Take care my friend and stay strong.

[Tallguy101 in reply to paul456]

Hi Paul456, thanks for your kind words. I've decided that I'm probably going to get a wheelchair, just for holidays etc... Not for use full time, yet.

[klazien]

Last time we were in London, I used a wheelchair with a little motor that helped the push. I don’t know if those can be taken on a plane, but a self-propelled wheelchair is no problem as long as you let them know. The same with wheelchair friendly hotels. In most countries one can hire a motorised wheelchair. This should make going anywhere much easier.

[Tallguy101 in reply to klazien]

Hi klazien, thanks for your reply. I think the time has come to make the jump and get one. Hopefully I won't feel too self conscious...

[Guardsman68]

Hello Tallguy I would second what Paul has said but without question I also feel guilty as I am reliant on my wife and grown up kids for everything. This year I was taking partial retirement and my wife and I were going to take more time together more holidays etc we’d worked hard for it then ataxia happened and that was that. But definitely look into a wheelchair definitely saved me as myself and gravity were having issues 🤨 I got a wheelchair through the wheelchair services at my hospital physios and OTs. I get out a lot more now which is definitely helped me and my wife.

NO SURRENDER

Lee

[nigelrheath]

hi Tallguy

One of the real issues with a progressive condition is to know when we need the next aid. I started with Nordic poles as they helped me widen my stance and keep my stride long. Then I acquired a nearly new mobility scooter to get into town and do some shopping. I also bought a small standard electric wheelchair, to go on buses, trains etc and allow me to still get to London. I swapped these, partly, for a very expensive all terrain electric wheelchair. My wife is a keen walker and we go to the nearby New Forest. My wheelchair gets me into town, London etc and being electric gives me independence. We have changed our saloon car for a WAV. Makes going out a breeze. We go on holiday in the UK only and particularly enjoy Warner hotels. Adults only and cater for my needs very well. It’s like a cruise but without the swell! It also gives my wife a break from cooking and there’s usually a pool and beauty treatments. If we are going far we stop on the way at Premier Inns as they have disabled rooms.

My wife is very clear that we are in this together. I’m just off now to buy some veg for tea while she plays in the garden. Look for ways to make your life work around ataxia. Are you getting attendance allowance?

Charities, local council and specialist 2nd hand mobility shops help to keep down costs.

Nigel

[Tallguy101 in reply to nigelrheath]

Hi NigelThanks for your thoughts, I feel now ready to take the next step and buy a wheelchair. I'm looking at the moment.

[nigelrheath in reply to Tallguy101]

mobility plus in the uk do an interesting range. If you can go for electric to take the strain off your wife. I have one of their upright walkers, which I use around the house.

Good luck.

[Guardsman68 in reply to nigelrheath]

Hello nigelrheath hope you are doing well just out of interest have you purchased your all terrain power chair from mobility plus? I’ve been looking to buy one and been looking at there site any pointers I’d appreciate thanks

NO SURRENDER

LEE

[nigelrheath in reply to Guardsman68]

hi Lee

My chair is a trekinetic gte. Best British engineering, but at a cost.

My upright walker, which I use at home, and if I am going somewhere indoors like the garden centre by car, is made by mobility plus. Much cheaper but flimsier. Otherwise for bigger trips and pavement work I use the trekka. We now have a Peugeot horizon adapted vehicle. 2nd hand to us and converted for notability with a ramp and pulley motor. We can now go anywhere at a moment’s notice and when we go on holiday I take both!

Happy to chat more.

Nigel

[Guardsman68 in reply to nigelrheath]

Hi Nigel thanks for that much appreciated. I’m not able to use a walker I have an issue with gravity 🤨 but I’m working on it. I have always been told it’s best I don’t have an electric power chair as I have seizures although I’m ok at moment with them it’s just I am struggling to push myself in my wheelchair because my elbows are painful but I want that independence so just looking at a company called ETECMOTION they do something that will fit my needs at moment it has a remote to stop the chair in case I do have a seizure. Blooming minefield trying find something to suit.

NO SURRENDER

Lee

[Sea_ in reply to nigelrheath]

I found this very helpful and useful too. I wish you all the best of luck. I’m looking at a second hand tricycle today but not sure I’m strong enough but that looks the business 😊

[nigelrheath in reply to Sea_]

hi Sea

Give it a try before you buy. I thought a trike would help me , but I have ridden a 2 wheeler too much and couldn’t get on with the different technique for a 3 wheeler.

Nigel

[Sea_ in reply to nigelrheath]

I’m not a cyclist so I did today and I’ve bought it . It’s a good bit away so her sons delivering it next week. It will get me to my sea swims for the next 6 months at my current rate of progression maybe more 🤞. I’ll let you know how it goes

[nigelrheath in reply to Sea_]

good luck and enjoy the sea. I can only swim now with a noodle! It was never my preferred form of exercise. The sea has a lot of restorative properties.

Nigel

[penelope2]

Hi, yes I feel guilty too. My husband travelled a lot with his job and was hoping retirement meant exotic holiday destinations then came ataxia. And as I am on a very restrictive diet even eating out in any form is fraught with anxiety for me and he so loves a burger and chips with a beer!!!Consequently everything needs planning to the smallest detail. Sort of takes the fun out of going out or going away. And what with the walking. A double whammy!

[Tallguy101 in reply to penelope2]

Hi Penolpe2

Thanks for replying, I'm glad I'm not alone in feeling like this. Also having a difficult diet aswell, what exactly is it?

One of the things that I'm going to do soon is buy a decent folding wheelchair, so when we do go away (she loves Cornwall) I can go for days out with her. She has gone out on her own and left me in the hotel room which is not good. I'm 17 years in, started of after 12 years with a walker and now considering the wheelchair which I suppose isn't too bad in terms of progression.

Anyway thanks and good luck to you.

[penelope2]

Hi, sounds like you are doing well keeping the progression at bay.I have a gluten free and dairy free diet and with cross contamination, simply put just touching any food or preparing gf food where gluten has been will contaminate it and then for me can make me really ill.

I have gluten ataxia and eating any gluten containing food will make the ataxia symptoms worse.

Hey ho it could be a lot worse though.

Many years ago when watching an elderly woman walking with a stick I promised myself I would never use a stick, but I am getting to this point. Feel better using a hiking pole, but maybe I am just kidding myself!!!

Take care.