I read somewhere, maybe on here or maybe one of the Blog’s that i follow ?
“If you fight MS ~ MS fights back”
but it doesn’t mean you can’t push the boundaries a little, in 2014 i was playing Badminton at a fairly high club level but by August 2015 MS had put me into a wheelchair, it felt like failure - like i had given up, i had a loan chair from the NHS which i absolutely hated, it was heavy and clunky and looked like something from the 80’s … yes, i had turned into that stereotypical image that we conjure up as soon as the word “Wheelchair” is mentioned (so this maybe why you are struggling a little with moving from the stick into a wheelchair or mobility scooter ? image/stigma) i wanted to remain active so i joined a small group for wheelchair users that had organised days out doing a range of different activities, most of the group were around my age group and they were turning up in trendy/sporty looking wheelchairs that weighed less than half what my loan chair weighed, so with a lot of research and trawling the internet i found a secondhand TiLite Aero Z (rigid) which i can lift into the boot of my car one handed, but the best thing - is that i don’t feel self conscious when i’m out in it, another concern was how my friends would react to seeing me in a wheelchair, so i did a group text to my 5 closest friends and arranged lunch at a local pub and got the whole thing out of the way in one hit, if a wheelchair or scooter will give you back something that you enjoy doing, then use them (Life is temporary ~ Make the most of it)
Watch out for the damaged trolleys, you don’t necessarily notice until you start walking with them and by the time you’re finished you feel as if you have had a workout and not in a good way.
Everything you’ve written is exactly what is going on in my thoughts Janet. On holiday abroad in October, I saw a young woman in a chair, possibly one of these. It looked so tidy and “young” looking, rather than the chunky hospital style I’ve had in my mind. I made a mental note when the day comes, (not if, I’m afraid) it was one of these I would get. Hopefully not beyond budget…
I am smitten with my rollator, the stability has so far been sufficient to keep me upright (always a good thing) the in built seat is a genius idea and I use it a lot in shopping queues. The little space to carry stuff is useful and it folds to get through tight gaps or fit in the car. It is light enough for one handed use and I managed to get a brake cable adaptor so that both wheels are slowed from one lever.(this stopped me spinning every time I slowed for a hazard) I use a Topro Troja
My progression was pretty fast. The falls became daily and quite dangerous. Dragging myself round on a walker was sooo knackering. I couldn’t lift my feet off the floor at all. I even walked backwards ie shuffled, for a while before I went full time wheelie.
Alun, if you are to secure a referral for FES at Odstock you may need to make a business case, so for mine I highlighted the cost savings to the NHS that my improved stability would bring. i.e less visits to A&E and my improved mental health. Good luck. Mick
First I wanted to talk about drawing. I learnt to draw when I was in my twenties, five years before my diagnosis with MS. I have always loved it - there has always something so wonderful about losing myself in trying to reproduce what I see. Even though my walking is terrible now and I have lost a lot of strength in my hands, I can still draw and get as much enjoyment out of it as ever.
On walking, I use a very light wheelchair when I want to go into town, or to shops or a gallery with someone who can push me. It folds very easily and the big wheels come off very easily too, so it will fit into most cars. I walk round my house and other people’s houses - I am very, very slow but that doesn’t matter when you’re inside. You’re right that it’s really important to keep mobile and carry on doing exercise but it’s also really important to keep having a life. Some people are so determined not to use a wheelchair that they end up doing only the very small number of things that they can do on their own two feet. I prefer to do the things I want to do, even if I have to be in a wheelchair when I do them.
Hi Alun I’ve been referred for a FES by my physio and will be fitted for one in February plus she referred me to the orthotics dept to see if there are any other braces that may help. This was in response to the two relapse I had prior to the dippy knees relapse so I don’t know if these things will still help I’ll find out soon. Have you got a physio at the hospital? They could refer you too.
i think you’re right. I’m afraid of giving in too soon but reading all the posts here that fear is receding as I am realising that fighting myself only defeats me as I become so tired I am unable to do anything. When I was first diagnosed I walked 10,000 steps a day. I think I was trying to walk off ms. During this period I was unable to really do anything else as I was so exhausted from the steps! My physio was so good she gently explained that it wasn’t the most important thing. The next relapse in June took away my ability to do this, then the next three relapses have taken more and more away. My average now is 2,000 very slow steps a day and it’s ok. I used to believe that the journey was important but now I believe in the destination. There’s no point in using all your energy up before you get where you want to be.
I’m looking into all the lightweight chairs and scooters recommended in this thread. I’m delighted that there are models out there that can fit into my porch for easy access. I hadn’t got as far in my mind as other people seeing me using these aids as me seeing me was enough to contend with lol! But how you did it is great I will do the same. When I got my first NHS stick I quickly replaced it with a coloured one which my children at my school loved. In the end, at their suggestion, I bought the colours of the school Houses and the sticks even played a part in our Prizegiving Ceremony to announce the winning House. Great fun. Working with my amazing young people is the thing I will miss most- they are just so good for the soul.
Drawing is my escape. It became nearly impossible with ON earlier in the year but I still did it even though it was so hard to see the paper. Thankfully my eye improved but I look at the drawing I did at that time to remind me that nothing is impossible.
What wheelchair have you got? I’m researching all the ones named in this thread (and the scooters too) so that I have a good idea as to what is possible). I don’t know if there’s any funding out there to help buy equipment? I have applied for PIP but I know that this may take a bit of a fight. As I’m due to take ill health retirement next year Access to Work are unlikely to help and to be honest it’s a battle with them anyway to get what is needed at the moment.
I agree (though it’s taken me months to get it) that having a life is the most important thing.
Did you see progressive improvement in your drawing as you got over the ON or did you just suddenly get back to where you were before? My drawing is really variable. I do something I’m really happy with and I think I’ve got better at drawing. The next time I draw, it’s often terrible. I don’t have any eye problems, so it’s not that.
Do you mean the wheelchair is to pay us back for some forgotten (or remembered!) sins? Can we make the wheelchair a karma chameleon? I can feel a drawing coming on.
my drawing is variable now. I have days when my hands shake but I make that work for me by doing continuous line drawings the wobble effect looks good. My biggest problems are concentration and stamina plus I always get nystagmus at some point which is annoying but fleeting. I would love to see your art. I have a great friend who is teaching me how to paint with oils and acrylics using brushes or palette knives. She understands fatigue and we work around that. It’s so enjoyable. Remember nothing is wrong in art. Visiting the galleries reminds me of this every time which is why I am so determined to visit as many as I can this year. Just before MS I went to see a Matisse exhibition at the Tate Modern and a Quentin Blake exhibition at the House of Illustration, both had their mistakes displayed and it’s so heartening as the art still works or is even enhanced by it. I went to the RA Summer Exhibition this year. It took real effort to get there but it was worth it. X
Some areas you visit have mobility shops you can hire a scooter from. So you book it before you arrive and use that to get around, and then drop it back.
You can buy scooters now so cheap though. I love mine, and i take my dog out and she walks by my side.
