I am curious how long each of us has had MS and what your walking status is right now? Choose the category in the poll that best fits how you ambulate the majority of your time.
How many years have you had MS?
I have had MS for 17 years. I walk with a cane the majority of the time. I always use my cane outside. In the house, I walk unaided. For longer distances, like the mall, I use a wheelchair. I have a rollator, but find it is too cumbersome to move in and out of my car.
I use a cane if I am outside, furniture and walls if I am in the house. If I am going out for any period of time beyond a trip to the mail box, I use my rolling walker or a shopping cart. Anything complicated, like a mall or airport, it's a wheelchair. I am 59 and have probably had MS for thirty years. No one seems to know! Good poll Shelly.
Post by blunder95237 on Dec 21, 2007 16:35:28 GMT -5
was dx'd in '99, but like diana, think it has been at least 25 yrs, that i had what i now know was symptoms.. i'm 59 also, and when i go on uneven ground, i use a pvc pipe walking "stick", (the pvc is so much lighter in weight), and also the shopping carts, too.. i have several types of canes, and tried using one or another, when we were out and about, but it was so awkward for me, i haven't used it since.. i know the day will be here soon enough, that i will use one again.. have a good day!!
I'm 59 also. I was dx 2 yrs. ago, had symptoms for 2 yrs. before that. The only time I use a cane is when I'll be walking for a long time (more than an hour) I like to go to art shows, either outdoors or indoors, and usually I stay about 3 hrs. In the supermarket, I always use a cart even if I just need a quart of milk.
This year the MS has taken me to the all time low. I have been diagnosed 2 1/2 years officially. Unfortunately I now know that the monster has been with me for 30+ years.....
When the MS kicked into gear I went from a cane to a walker in a years time. Then the last wallop came at the start of this year and the downward spiral has caused me to be bed bound for the majority of the time...I haven't been able to stand for over 2 months now. I do have a power chair when I can sit up.
If only I would have known that the annoying twitch in my foot was the very first hint of what was to come......I wonder how different things may have been. Oh well, too little and far too late....to change things now.
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Watch your words, they become actions.
Watch your actions, they become habits.
Watch your habits, they become character.
Watch your character, for it becomes... your destiny.
I used crutches and then a cane for about 8 months - from the fall of 2003 thru March 31, 2004. I began Copaxone December 24, 2003 (about 23 days after being diagnosed) and it took from that time until April 1, 2004 for it to kick in. I've been "cane-less" now for over 3 1/2 years.
It hasn't been easy a lot of time and it involved a lot of hard work.
Post by flfairlady on Dec 22, 2007 12:45:25 GMT -5
I have just started using a cane within the past 4 months, more to help me stabilize with my vertigo. I HATE it! But I have found if I walk more than a block or two the vertigo gets bad and I start to weave, which isn't good! When shopping, a cart is enough to keep me going a a straight line (usually) and provides a bit of confidence even tho it rolls!
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I've been dx'd since 1983 and I'm 54 at the moment.
I walked unaided until around 1994, then used an aluminum cane.
In 1996 I started using an older rear drive E&J power chair part time for long distances and could still stand, pivot and walk short distances with my cane.
In 1998 I had a major exacerbation, started using Avonex and had to use my power chair to move, but could still stand & pivot if I had a solid hand hold. After a couple months I could walk a short distance with my cane.
In 2002 I had another exacerbation and was switched to Copaxone. During and for awhile after the exacerbation I had to use the power chair to move and needed assistance or a solid hand hold to stand and pivot.
In Fall of 2004 I could still stand and pivot, but could only wall-walk about 20 feet. I can't get up off the floor if I fall. Medicare & insurance bought me a mid drive wheelchair so I could get around inside my house better than I could in a rear drive power chair.
In 2005 I lost the ability to walk even a step or stand unless aided by a solid hand hold. Even wall walking is impossible.
In 2007 I need assistance to dress and toilet most of the time. I'm on my third PT group, 2nd in a year, and they're trying get me back up and hopefully walking with assistance by 2009. I'm able to stand for over a minute when assisted by the parallel bars right now and walk a few steps with a therapist on the floor under the bars operating my right foot.
I hope this isn't too much information.
"Don't sweat the petty things and don't pet the sweaty things"
I was diagnosed 5 years ago, but have probably had MS for 30 years or so.
Shortly after I was diagnosed (SPMS) I started using a single cane outside the house. A couple years ago I got a rollator which I use outside the house unless I'm just going from the house to the car. I use a store scooter or wheelchair when shopping (which I rarely do any more), and expect to get a wheelchair of my own within the next year.
Around the (very small) house I do okay on my own, although I tend to bump into things when I go around corners.
Post by holly000 > now holly on Dec 22, 2007 19:29:49 GMT -5
This is a tough question for me to answer, mostly because it changes from day to day.
I never use my cane inside the house. I always take it with me outside, but only use it on really bad days, or when I'm worried someone might think I'm drunk. Or if I'm walking long, long distances, or in a store I know has really high shelves and crowded aisles.
I use a single cane for balance only. Strengthwise, I don't need any assistance. Like Diane said, I use walls and furniture for balance inside.
“Don’t waste your time or time will waste you“ -Muse "Knights of Cydonia"
There is a theory which states that if ever anybody discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened.
I mostly use my rollator in the house, (which is what I answered) which is where I am most of the time. But I use forearm crutches to get to the car or into family member houses. When I am out of the house at the store with my wife or other family, I need to use my wheelchair. I really need a power chair for just about everything, but am having insurance issues right now. Too in depth to get into right now.
I am 37, been diagnosed about 4 years now. Officially RRMS, but one DR in Iowa City called it Progressive Relapsing MS. I don't care about the name, I just know it is progressing too quick!
My answer is sort of between answer 1 and 2. I do need a cane outside the house if I am really fatigued or dealing with shooting pains, but usually I don't need help. I've been doing this for about 18 years.
I'm 42 years young (Ha ha) and have had MS for 21 years now.
I was diagnosed 18 years ago. Thankfully, I found a great doc 15 years ago who prescribed aggressive treatment with monthly steroid treatments for about 3 or 4 years (Betaseron and Copaxone and the other ABCR meds were still in trial and I was having exacerbations every 3 or 4 months). I began Copaxone as soon as it became available in 1996, so I've been a pin cushion as so many say, for 11 years now.
And Craig, I really appreciate your answer, it's not too much info. I'm cheering for you. :-)
I have been diagnosed almost 13 years and still refuse to use any walking assistance...I fall as much, if not more, using a cane. I'm that much of a clutz.
And if the time ever comes that I HAVE to use something, maybe they'll have invented some kind of contraption for adults...walkers, you know, like babies use when they are learning to walk. Then I wouldn't fall out of it, Just strap me in and....
Last Edit: Dec 26, 2007 18:13:10 GMT -5 by honeydew
Be kinder than necessary Because everyone you meet is fighting Some kind of battle.
Post by katkatgrannie on Dec 30, 2007 23:13:30 GMT -5
I go from walking in the house ok most times to a cane. Any distance it's the electric w/c. I had a scooter but couldn't get close enough to things in the store or have as much fun with the grandkids.
I noted that one person marked bed all the time. This is really not a good thing. For some it's due to pain but other than that a person should be out of the bed at least once every day. It aids with circulation and respirations tremendously. Also prevents bed sores.
If a person ever has to be in a hospital bed all the time make sure you get a decent mattress and circulating air mattress overlay. Medicare and Medicaid plus insurances pay for these.
If you ever get a bed sore you can get a really good hospital bed that prevents and helps to treat these.
With Medicare and Medicaid and most other insurances they do pay for home health aides to move you. Assistive Technology and Medicare/Medicaid and insurance companies can also help pay for devices to transfer you and special chairs for you to get into.
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"Be who you are and say what you feel... Because those that matter... don't mind... And those that mind... don't matter."
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