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crossroads

Hi guys!

Well I had my astra zenica 2nd jab yesterday and feel fine…last time I had a dizzy reaction, so all is good!

Now the title of my post…crossroads…I’ve posted this type of thread before, but have a friend who is really going through it…so I am prompted to talk about it here.

My friend doesnt have MS…she has HSP ie hereditary spastic paraparesis aka paraplegia. I was wrongly diagnosed with this some years ago. That’s how I met my friend…I joined their support group and went to the AGM.

HSP is such a little known neurological condition. Many medics havent heard of it. It is very similar to MS but is genetic in the majority of cases.

Anyway…my pal is in a bad way. Her mobility is now so dodgy that she is falling nearly every day and becoming quite depressed.

I know how that feels, having spent the last 20 years in a wheelchair myself. I had daily falls, suffered serious fatigue was totally cheesed off to say the least. My chum loved to go into Leeds for a walk about every day…except Sundays.

So I have gently talked to her about her future…either on legs that continually let you down or with wheels…scooter or wheelchair.

She is so totally against the idea and says she will not go out. But she isnt happy to stay indoors, to never see her friends, to never enjoy all that Leeds has to offer.

She rings me daily to have a moan…we all need a pal to moan with.she did support me through the 5 month carer ordeal recently. I dont wish to not to take her calls, but they are depressing.

I love this lady…she is a good person…how can I get her to consider wheels?

I know many, many of us have had to make that change when our legs pack up.

What do you reckon?

Boudsx

I think the only thing you can do is try and limit her calls as its not going to be good for you listening to her. As much as you want to help her we have to think of our own health too.

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hi pol

loook after self first always pol. support is offfered and needed in so mamy ways.

similar to on a plame put on yuor own mask first to enablke to help others. not at all selfish but putind self in best ppoistiom to aid others.

el x

Hi, I am getting to the point where I need to consider a scooter for walks. My mum and sister go out and im not included because they know i cant walk far - so I get invited to go for coffee instead, but im feeling left out. I have thought about a scooter for when i can go on holiday and no one apart from the person im with will know me. Its getting my head around the fact that I cant do or walk like i used to and others seeing me in that way. I was the same when i had to use a stick for the first time - or tell people i have ms, it just takes time to accept.

Im sure your friend will come around to the idea - its either that or keep falling and hurting herself, or missing out on life!

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Many places have scooters for free or a nominal charge. National Trust often have heavy duty trampers. Some Arboretums. I hear shopping centres have them, but that is not where my interest lies. Look up Tramper on the web should give you some ideas.

Embracing the possibilities while you still have some core strength will probably be more productive than treating it as a defeat. After trying out several in different places, I bought my own but only use it for trips over a mile up to be going out and about for most of way.

several things, could it be she simply cant afford to buy a scooter or wheelchair? Maybe suggest to her she has an OT assessment?

They can provide her with the tools to go out. Also sounds to me she needs mental health support too.

some people get so involved in being a victim of their illnesses because it gives them companionship they dont look at the big picture. Perhaps she thinks whilst she can call you she doesnt have to face the NEXT STEP which is she needs help but not thinking about it or doing it well it wont happen.

several things for sure. Does she live near to you? Can she reach you by scooter for example or can you visit her? If you can perhaps you could see her with your scooter and let her try it out, or you can ring mobility shops in leeds and ask them for demonstration if you can just get her to open up. if it is money OT.

But sometimes you have to be cruel to be kind. if she is just being stubborn, then i think you have to be honest with her friens should listen shoudnt they. Say to her how you feel. Tell her she neednt be afraid it will open up her life. on ebay i bought a rollator with a seat for under 40.00 its fab. Maybe start with something like that if she wont see OT.

tell her it will save her from falling. i think once she starts to use an aid she will realise how good they are and safe, but action is needed here for sure as she will loose you too.

sorry my answe is a little all over the place i had a bad night.

i must admit being on my own i am now hesitant to go out as i have lost my confidence. I worry if i go out on my scooter i might break down. the thought of that puts me in a sweat.

also i think Covid has a lot to do with it too. you feel safe in you own little area of life. its a scary world out there with monster viruses and this too may be putting her off.

what a sad lady really. I feel her pain. but i think you can get through to her. xxxx

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Thankyou friends for your kind words of support for my friend.

I dont live near here…about 20 miles away. We meet up very rarely, usually in Huddersfield. She gets the train there and I get taken by carer or hubby to meet her.

I dont use a scooter anymore…but when I did, I loved it. had it 13 years and then gave it to a member who, who doesnt come on now. I wonder how she is doing…Linda from quite a way off.

I’ll see how my Leeds friend goes…and try to encourage her to not miss out on being in the great outdoors.

Her flat is quite dark and small…I went once and could only just get in the front door in my wheelchair.

Boudsx

My friends husband is at this stage with HSP. We’ve all been doing our best to persuade him that wheels are not giving in, but just the opposite, it restores some freedom, but so far he’s not having any of it. He thinks he’s being less trouble sitting at home doing nothing.

It’s tough isn’t it? When I first started using a wheelchair and mobility scooter I wouldn’t go anywhere where I might see someone I knew! I knew it was nothing to be ashamed of, but I was embarrassed, and Idon’t know why.

I came to terms with it eventually, I hope your friend does too, and soon. xx

It is really tough trying to be supportive. I know from my own stubborn behaviour that it can take a long time to realise that the benefits of being out and about usually outweigh the difficulties (real or imagined)

You do need to ensure that someone else’s pain or struggles do not massively add to your own issues, or you will be less able to be a supportive friend in the longer term. If you can get your friend to a neutral location where you can try wheels of a sort, she might begin to see that it may not be a bad as she thinks.

For a long time I refused to accept that my best walking days were gone, so I would sit in the car waiting for my wife and friends to come back and show me pictures of their lovely walks.

Now I can join in a hell of a lot more and see stuff with them. I regret notgetting on with it sooner.

All the best

Mick

Not sure if this is of any help, but is there anything that your friend used to like doing as in places she liked going ? As other have said, some places have scooters and chairs to hire on site so you might be able to get her somewhere on false pretences and then hire a chair/ scooter once you get there ( they usually need to be booked ahead)

I can sort of understand how your friend feels - a chair / scooter is kind of admitting in public that your have a disability, but as others have said, it’s possible she is depressed and needs medical help with that