Time for a wheelchair?: I guess I am... - My MSAA Community

My MSAA Community

8,919 members β€’ 20,601 posts

Time for a wheelchair?

Amore55 profile image
Amore55
β€’27 Replies

I guess I am approaching that dreaded time when I need a wheelchair to go anywhere in public. I am hoping it is just the heat causing my legs to not work. I need to engage with physical therapy too. It has been the hottest July on record here usually about 102-105 degrees everyday. Thank the Lord for a/c! I believe everything will work out, trying hard to be upbeat. I met a woman who has had ms for fifty years! Can you even imagine? Anyway love to all of my forum family. Kelly πŸ’•

Written by
Amore55 profile image
Amore55
To view profiles and participate in discussions please or .
Read more about...
27 Replies
β€’
jennie62 profile image
jennie62

Amore55 I've been feeling the same. Between the heat and the rain I don't seem to be able to do anything. When I'm home I stay where it's cooler, but when I go out with my daughter/son-in-law and grand daughter I always wind up needing to sit down because my legs aches so badly. Even using my cane or a cart to hang on to still doesn't help me the way it used to.

I feel bad for the woman who has had MS for 50 years, but hearing about her makes me feel better just knowing she's done it and maybe so can I.

I hope you do well and feel better quickly Kelly

Amore55 profile image
Amore55 in reply to jennie62

jennie62 I am so sorry that your legs are being difficult for you. I know what you mean about the cane and a cart just not being enough anymore. But let's keep on fighting, okay? We can do it! 😍 Love, Kelly

jennie62 profile image
jennie62 in reply to Amore55

You are right. We can do it! The fighter in me is back! : )

rjoneslaw profile image
rjoneslaw

@Amore55

Hang in there and stay upbeat. I know sometimes we want to throw in the towel.

Amore55 profile image
Amore55 in reply to rjoneslaw

rjoneslaw I will stay upbeat, I know I can beat this and I surely will never throw in the towel! Too many good things in life. Thanks for your kind words. Kelly

erash profile image
erash

Hi Amore55

Hang in there Kelly--Winter is around the corner (I hope!). Think cool thoughts :-)

Taylorsmom profile image
Taylorsmom in reply to erash

erash

I hate winter with a passion and love the summer but I'm beginning to think that summer no longer loves me. Lately I sweat (usually don't sweat ever) and my legs feel soooo heavy. I don't know if that's my ms, me getting older, who knows. Yesterday was a pretty hot and humid day some would say but it was fine to me until I stepped outside in it. My legs don't want to lift up that much these days and I feel like I'm dragging my feet, needless to say, that's not good when you're walking in 6" heels and try to step off of a curb. Down I went lol. I can't wait for my appointment with my neurologist next month, I have so many questions.

erash profile image
erash in reply to Taylorsmom

Taylorsmom 6"heels!!!!

I have exercise sneakers and dress sneakers (they're black).

P.S. Sweating is good-natural cooling system.

WAshingtongirl profile image
WAshingtongirl in reply to Taylorsmom

Hope you're ok, Taylorsmom ! 😬

Gotta watch those heels, steps, curbs, and even the cracks in the sidewalk. Sometimes it seems my eyes are always focused on the ground. I'm sure I miss a lot of what's above and around me.

Taylorsmom profile image
Taylorsmom in reply to WAshingtongirl

I am ok WAshingtongirl ! Same here, can't just get my strut on anymore lol. I don't have any problem falling on my own, now I have to look out for all of this other stuff.

Amore55 profile image
Amore55

Erash, you are right, cooler weather is coming! Along with football! Yeah, I do love my football.

Kelly

Bygonelines profile image
Bygonelines

Kelly - I am so sorry your legs are giving you so much trouble. If you only need the help when you are out and about you should look into getting a mobility scooter. Keith and I love ours! They make our lives so much easier, especially in this heat! If you would like to try one out we can set a time for you to come over and test our's out. Keith and I have different scooters. His comes apart to make it easier to put in a vehicle and mine does not.

jimeka profile image
jimeka

Amore55 is it wrong to say that it comes to all of us eventually if you have ms. I wish it didn't but I guess it's part and package. I have been thinking along the lines of a mobility scooter like Jackie said. Maybe we all need to swallow our pride and just accept ms for what it is. Send us a picture of the scooter if you get one. My problem is I need one that I can fit Razor on as well. More expense, but then hey, what we do for our pets! Keep smiling, hugs πŸ€—

agate profile image
agate

Hi @Amore55,

I've had MS for almost 40 years, and have used a manual wheelchair since 1984 even though I can still walk short distances, usually. A wheelchair is an adjustment but for me it was a ticket to a much easier life as sitting in most chairs was painful for me, and if I walked I never knew just when a flock of symptoms would come on--sometimes after half a block, but sometimes not until half a mile. I was diagnosed in 1980 but had disabling symptoms since 1978.

Hang onto that air conditioner!

Jbahnan profile image
Jbahnan

Hello Amore feelings the same I'm here in mich and its really hot legs not working well also need to engage in PT, hope u feel better GOD BLESS!!!

I had to start using a scooter 2 and a half years ago. It was a very humbling experience. My first symptom was in December and the following March I was in a scooter. I attempted to be tough and take the pain and walk at first . I finally made the smart choice to use the scooter. I get looks from time to time because I don't look old enough in some peoples eyes but I don't let that upset me. Embrace the wheelchair , you'll be glad you did. Good luck

REDLIPS44 profile image
REDLIPS44

I use a walker 24/7 and use a wheelchair when out and about the hear here in SC is very hot and when I get hot my right leg will not work at all. I have a cooling vest but it's not a sure thing for long.

MarkUpnorth profile image
MarkUpnorth

Fight! Fight! Fight! Don't give up. You can get better! I went down over the years to near comatose and needing a cane to move myself the little I could. It was a long haul, but never gave up fighting, always in my mind giving it my all, and I've gotten better, and I'm still pushing to get even better. Still use the cane, I call it my handy multi-purpose tool, but now not because of weakness in that leg that I dragged along for so many years. Now just for balance help. Now I walk a quick 10K (steps) everyday for a guy with or without a cane! But average about 15K. Never been a walker or runner. Run with a cane? Got to overcome balance issues first! Diet, and the unwillingness to give in, ever, no matter how unbearable it seems at times, is what has and is helping me and others I am aware of who are also improving and coming back. I still have 25-30? years of accumulated "gifts" from the M.S., but, I'll never give in. Trying to fight those gifts too, overcoming some, others not so much, yet! If you need a wheelchair, don't fret it. Get over it. Use it, But don't stop fighting. Everyone else I know who are fighting this disease and are improving, are doing so by giving it their all to fight this disease! The now famous doctor who preaches diet was wheelchair bound, went thru treatment to undo her muscle atrophy from being wheelchair bound for so long, did.

Heat is horrible for us. But you can overcome this as well. My wet noodle days are becoming fewer for me anymore. Heat + humidity is still the worst for me. But I intentionally traveled last summer to Arizona for the 115Β° Phoenix temp's and was fine, out all day! Day after day! Yes, a dry heat is hot, but bearable. Just don't directly touch metal.

There are people coming back from M.S., but they all seem to be strong willed fighters against this horrible disease. And like the M.S., the fight starts in that part of your brain we call our mind. Without convincing yourself it is possible, it won't ever be. Hard to change your lifestyle and thinking when suffering, but it can be done. Start by using a manual wheelchair. Don't do a fancy electric if you can. And think of it, and use it as an exercise vehicle, not a means to give up! Push yourself in it. I'd love to try biking again. I can't yet because of balance. I've tried and tried. But, I will someday save up enough for a trike. Tried one at a disability event, wow! If I had to use a wheelchair, I'd be looking for one with racing stripes to keep me in the right mindset!

greaterexp profile image
greaterexp

Amore55 , I pray your need for a wheelchair will be reduced as the temperature goes down.

Joni Earecksen Tada talks about how her wheelchair was a dreaded burden at first until she realized that it gave her mobility and freedom. I try to remember that when I need those electric shopping carts.

If you do decide to use a wheelchair or scooter, I have no doubt that you will make the best of it and do it in style! Let us know how you're doing. We all love you!

SlmHarris profile image
SlmHarris

It was hard for me to say I need assistance. I got me a scooter for long areas to walk. Now it is nit working and I cannot get the sob to give a service call.

I guess I will continue using the ones available where I go. If nit available I guess I won't go

sallyscharff profile image
sallyscharff

Hi Kelly, sorry to hear you need a wheelchair. I've had MS for almost 30 years and it went into remission, but because of all the steroids, my osteoporosis is so severe that I need a wheelchair too! So ironic!

Dpjinx profile image
Dpjinx

I was dreading the same though. I have used one on occasion. Of course, ALWAYS run into some one you really didn't want to see this change. But it does preserve my energy. I'm not ready for one full time but am excited that it does help. My legs don't always work either. But am able to 'enjoy'

Karen-x profile image
Karen-x

Keeping you in my prayers Kelly! πŸ˜™

RobertCalifornia profile image
RobertCalifornia

I started using my mother in laws little scooter to go to Disneyland with my daughter and grandchildren. Graduated to a full size scooter this year. I can now go on steep paths at national parks while my wife walks. I too was embarrassed at first because I am not that old, but I can go 8-10 hours at Disneyland. And my grandson can ride on it with me. Do whatever you have to do in order to stay active. I have drop foot and I can no longer walk more than a couple of blocks at a time. This spring my wife walking and me on the scooter completed a five K walk Ms fund raiser.

WAshingtongirl profile image
WAshingtongirl

Amore55 , I'm praying it is the heat causing your leg weakness, and come a change in weather, you'll bounce back. But if not πŸ˜•, I can't add anything to the excellent and eloquent words already shared by others here. Sending a hug, my friend. πŸ’ž

Kevin_McMillan profile image
Kevin_McMillan

Amore55,

My Step-Aunt has had MS for 40+ years and she is bed ridden and can't talk! I was DX'd in 2012 but had symptoms for a long time, looking back my first symptom was my Freshman year in H.S.. I did get a power chair in 2013 and used it to go to the car shows, swapmeet, sporting events. I did improve some after getting it through diet but I'm falling off again! Heat has bothered me for the last 10+ years, in 2006 a hot tub paralyzed me from the legs down and 3 guys had to all but lift me out! It was really helpful to have the chair, especially after seizures!

I recommend you get one so you have the freedom! Take care!

AngieRowe profile image
AngieRowe

Amore55 , I think I am there too, it is a struggle to accept. I had recent knee surgery that I am hoping it will help. (Now in rehab) Around house, I usually use walker). The heat melts me(Arkansas) so I always use ice Vest, which helps for a couple of hours. I have drop foot also . I have a brace but it is heavy and leg is weak. I am going to order new lighter brace a see if that helps. But in know that chair in in my near future for any distances or length of time. Humbling. Taylorsmom , I hated giving up my heels, I finally had to bite the bullet and give them all away. It was painful! I still see pictures and want them all!

You may also like...

Wheelchairs and sidewalks

time I've really had to go out in public with my motorized wheelchair, and if I wasn't already...

Day 2 - Wheelchair in town

in my head. I am not a small woman. Put me on a motorized wheelchair, and I'm even bigger. Well,...

Scooter vs Electronic Wheelchair?

What is your preference, scooter or electric wheelchair, and why? Please give details. Thanks!!!!

Wheelchair Kamikaze

great wisdom, support and understanding from the wheelchair kamikaze. His posts resonate with me as...

Broken wheelchair

maybe I can get a new wheelchair and the insurance will pay for it. I only need it when I go...