Hi Lucy, firstly, well done for helping your mum…we need good carers like you.
Do you think it would be safer if your mum was hoisted?
I was doing things the way your mum does and the up and downs took so much energy and eventually, I couldnt weight bear anymore and my legs gave way. I had so any awful falls.
I find the hoisting really good. I have a ceiling track one in the lounge, to enable me to transfer from wheelchair to recliner and one in the bedroom, which gets me from wheelchair to bed or wheelchair to commode.
A full report on MS-related falls and wheelchair/powerchair/scooter use is urgently needed because it will help guide better policymaking and funding to improve independence and quality of life.
It would also be a good way of monitoring the work of NHS Wheelchair Services which has been privatised in many areas.
For example MSers:
Did you get the powerchair you wanted from NHS Wheelchair Services?
Dr Geoff, you are of course right about adapting or giving up but it doesn’t make it any easier to deal with when the time comes for more permanent wheelchair use.
I always said to myself as long as i could hobble around the house I’d be able to handle this whole MS thing then I broke my hand after a fall last year and haven’t made it out of a wheelchair since. At the age of 42, it’s a pretty devastating blow (even though the rational part of my mind knew it was coming in the end).
As everyone here will know, MS is all about coping with change but this for me has been the hardest change of the lot. Again, the rational part of my brain knows the only way forward is acceptance and adapting but when depression and despondency kicks in, it all feels like a monumental mountain to climb.
Edingirl. I only just seen this question and the thread has already given you lots of answers. Wheres YOUR question coming from. MS affects everyone differently. Look at some of our Paralympians.
You may end up needing a wheelchair. Some of us use one all the time or just part time. Other factors? Age, general health, how long you have had the MS, whether its got worse faster or slower.
Hi there Jemma, I’m 47 & since my diagnosis of PPMS 3 & 1/2 years ago, the experts say I need to be in a wheel chair & shouldn’t drive.
Simply because I deny their verdict & guidance, I’m made out to be a fruit cake. You can still do anything you choose to do with this life. Never give up. That’s what the quitters do.
I dropped my son & his partner off at work this morning, in the pouring rain & treated them to breakfast.
From being a cabbage, unable to walk on medication. I exercise, eat healthy, refuse medication & do things differently.
It’s got me my driving licence back & I try to walk even without sticks. Using the my motto, use it or lose it.
According to the pot heads, the aliens are coming anyway & they’re stashing extra fish cakes.
i certainly have’nt given up and i’m not a quitter, i was just answering the main question of how many people end up using a wheelchair for mobility, and that i’m probably one of (if not) the youngest on the forum ?
i still work part time within our family business ~i still drive my car (with hand controls) ~ i swim 3 times a week ~ i play wheelchair basketball ~ i go Kayaking ~ i have a very active social life ~ and the list goes on
my legs are pretty much completely numb, i can move between rooms at home with the aid of a walking frame but it’s painfully slow and theres a big risk of me falling, so my wheelchair is a much faster and safer way of getting around
Hello out there! I am a 63 year-old woman. I live in Toronto, Canada, and was just diagnosed with MS. I mean just. Today is the 26th of May and I got my diagnosis on the 24th. To say I was not prepared for the diagnosis, while not a shock, the timing most definitely was! I had no idea I would be getting my diagnosis. I was told I had an appointment in the neurology department of Sunnybrook hospital here in Toronto. My symptoms, though I had no idea what was going on were symptoms. Around four, five years ago I noticed after walking for, let’s say, 40, 45 minutes my left foot would roll to the left. I wasn’t even physically tired an d I couldn’t understand what was going on. I had no other physical issues. I workout on a pretty or semi regular basis, so these episodes were confusing and annoying. That went on for quite some time. Nothing more was going on. I’d say maybe three years ago I noticed my left leg/foot would get heavy. It knocked my balance off. Now, I have never had good balance, so even this wasn’t that out of the ordinary. What got me concerned was these were happening more often. Eventually, maybe a year and a half ago, this was happening almost on a regular basis. Still not daily, but enough I could see there was ‘something’ going on. So, for the past year or so after walking for a bit, my left leg felt gimpish. My foot, I was noticing was not landing the way my right foot was when walking. My left foot came down on the pavement like a thud, not the way it should with the foot moving from heel to toe or is it toe to heel? You get the idea? OK, I have no idea what to expect. I have no idea what questions to even ask. I am so in the dark, and probably still in mourning, or whatever you call it. I still feel like I am talking about someone else, certainly not me. I am angry. I am scared. I am sad, very sad. I have dealt with clinical chronic depression for over 30 years. Around the middle of 2016 I noticed a huge difference in my depression. Not only was it plummeting, what was depressing me changed as well. Now I found myself ‘comparing’ myself to anyone and everyone. It has gotten so bad, I rarely go on Facebook because I always feel like I do not measure up. I changed medications what seemed like every other month. Eventually, at the end of 2016 I started ECT. At first I did it as on out patient, until things got so bad I had to be hospitalized for close to a month. I do feel a bit better, but I have to tell you, I can count the times I have felt ‘happy’ truly happy in the past three years on the fingers on one hand and still have fingers left over. Will I ever feel happy?
Will I end up in a wheelchair? Is that where all people with MS end up?
I know this post is all over the place. I hope I’ve given enough back story.
Hello, look at this positively, you’re guaranteed a seat in a packed room, you’ve invariable first on a plane, you get into shows etc cheap or for nothing, you have reserved car parking near to shops, you get VAT free on items for yourself, you’re never asked to wash the dishes, Brian
Hi Simply sassy, I’ll let you know my experience or I should say two experiences, my mother has secondary progressive ms, she was diagnosed when she was about 50 and lost sight in her left eye, first 15 years or so she had no other issues, after that she’s got worse, now totally blind, deaf and the only mobility she has in some movement in her right arm. She was never offered any dmds and has never had any treatment. Shes now 80 by the way. Life’s not much fun for her but I do what ever I can to help my father care for her. She went into a care home for a month 6 months ago and absolutely hated it so I’m doing everything I can to make sure that doesn’t happen again.
I was diagnosed with rrms when I was 36, when both my legs started going numb, but I recovered after a couple of months and had no other issues til I was 44 when I lost the sight in my left eye, again I recovered fully but I then started on Avonex injections and basically 4 years on I’m still doing fine, no one would know there was anything wrong with me. Which is a blessing as it means I’ve never had to tell my mother I also have Ms, that would break her wee heart !!!
So I suppose all I can really say is yes everyone is different, we all wish we knew what he future held for us but we don’t. It’s easy for people to say take each day as it comes and for all I know I should while I can, my mum’s situation which depresses me a lot more than my situation does stops me. Medicines are moving forward all the time so don’t give up hope. Try and stay strong and positive, not easy but people on here will get you through the tough times. Good luck x
I’m aged 51, have had MS for 21 years, initially relapsing remitting, now secondary progressive. I wasn’t able to take disease modifying drugs for most of the time I was RR, and following a very nasty relapse 6 years ago have been a more or less full time wheelchair user. I can manage a few steps in the house, but that’s it.
In many ways, the loss of the use of ones legs seems to frighten people the most. Don’t get me wrong, I’d rather be able to walk, but I’d rather lose my legs than my eyes or my brain. I do have some cognitive problems, but most people wouldn’t know it.
It sounds like you have what is usually called ‘foot-drop’. That’s where your foot doesn’t pick up at the toes the way it should. This can be corrected by an orthotic device or a Functional Electric Stimulation device. This comprises of stick on electrodes that stimulate your perennial nerve (that runs down from your knee to the foot and is usually the cause of the problem). The electrodes are attached to a control box and either wired or wirelessly send a stimulus to your foot that makes your toes pick up. Why not ask your MS nurse, physiotherapist or neurologist about this (when you get to see an MS nurse or physio).
If, as it seems, you’ve had long standing depression, the diagnosis of MS is going to be hard to get your head around. But it can be done. And you’ll hopefully find that you are defined as being in the relapsing remitting category of MS. This means you can be prescribed a disease modifying drug (or DMD), these are designed to reduce relapses and the severity of relapses. The less relapses you have, the least damage is done to your nerves and the less likely you are to need a wheelchair.
If on the other hand you have the progressive type, it still doesn’t mean you will definitely end up in a wheelchair. But if you do, it’s not the end of the world. As many people on this thread have pointed out, using a ‘chair is often quite empowering. It enables people to do more because they no longer have to struggle with useless limbs that just done work.
Feel free to keep coming onto this forum when you have questions or thoughts to share. Or of course, there is probably a Canadian version of the MS Society.
I know where I live is around five hours behind you, so, yes it is still morning here in Toronto.
How do you know what type of MS you have?
I haven’t seen another doctor since my diagnosis four days (weekend, right), so I am still waiting to find out what I can possibly expect. I still feel like I am talking, writing, hell, even thinking about another person.
So far, everyone I have told knows someone who has MS. How can it be, that at 63, almost 64 in September, I have not known someone who has MS. OK, at least, no one has said as much.
Look, I am scared shitless!
On one hand I know I just have to get through each day because today is OK. I don’t even know if I have accepted my physical limits. I can’t even walk for 10 minutes without my left leg/foot feeling a bit gimp(ish).
As far as drop foot, I don’t know if that is it. I don’t feel like my toes drag and isn’t that a symptom of drop foot? My left foot doesn’t do the natural ‘roll’ like my right foot and my left foot used to.
I have no information to deal with this, not yet. Is that word OK to use. To ‘deal’ with this? Maybe now isn’t the time to worry about being ‘politically correct’, I just am feeling lost and frightened.
My wife(47 yesterday) has had some problems walking any real distance for a few years now but worsened after a real bad attack in March 2017. When she visited Dr at this time and the Question of Ms in family came up, it all made sense but i as a husband had all sorts of thoughts rushing through my mind and worrying about how the future would pan out, should i be sensible and save for pension,but might need funds before 55 when accessed so save elsewhere? combination of both? Spend everything we have saved and live fairly irresponsibly whilst she can still enjoy it? A motorhome maybe?
Eventually and helped by reading on here i realised there were no certainties or set patterns and i stopped worrying(well every day atleast!)about what i couldn’t control,and started to sleep better.
I didn’t buy a motorhome but got the welder out and made a pull out bed in the Van we had so we sometimes wake up with a sea view and go camping regularly in that.Other changes are that i bought a small automatic car to replace our other car to give her a chance to drive when she is feeling up to it and i do most of the housework etc(though she fights me on this as she feels guilty). although she can walk with a crutch i have felt for a long time she could do with a chair or scooter as i felt she was limiting her life so much and it was horrible to see her in such pain when she pushed things.But i haven’t pushed the point,its her decision to make.
Since she has now been diagnosed and met Ms nurse etc she has accepted and admitted she is struggling to walk any distance and thought she might want a mobility scooter.Huge step for her.We looked at some in a shop and decided on one she would like but pricey.On Saturday we drove 90 miles to get one which was used once but bought a year ago so i think a real bargain.I thought she might feel self conscious but we she loved it straight away and we were able to have a lovely stroll together alongside the sea(littlehampton where we got scooter,never been there before) like we haven’t been able to for several years.Then yesterday she was able to go round the shops with her daughter(who is in wheelchair)whilst i went kayaking with dog!then met them afterwards to walk dog and have food,icecream and a pint on poole quay,we all had a great day and crammed in far more than we could of imagined but in the evening she wasn’t in pain just a contented tired like we all were(especially Bella the dog!)
If you need the help of a scooter or powerchair then getting one is likely to be a massive positive,try not to focus on the negative.My wife isn’t going to suddenly give up trying to walk ,we have walked round supermarket today having a scooter doesn’t mean she has to be in it all the time but our life is less limited and more enjoyable as a result of her recent decision
