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195469 tn?1388322888

I need your advice...

How do you know when it's time for walking assistance?  I have been diagnosed with MS for over 13 years.  Of all the pain I have had over the years, it's been consistently in my legs.  (I have a lesion in my thoracic spine) More lesions in my brain than I have fingers and toes to count on.

I have noticed over the past few months, that my legs are getting weaker.  I try to push myself to walk, even when my legs are fatigued and even when my spasms are at their worst.  What I get in return is more weakness, really concentrating to put one foot in front of the other.  My muscles will start to burn, after just a few minutes of walking.  Stairs are a real challenge.  They feel like they are in concrete, as I try to go from one step to the next.

It doesn't matter what time of the day it is.  My legs will do this with a few minutes of waking up and still be doing it by nightfall.  Possibly a bit worse, as the day wears on.  This only used to happen to my right leg, now it's both legs.  I know that I am walking "differently," because now I am having alot of hip and back pain.

I have had balance issues since my diagnosis.  As long as there are things to grab onto or walls or bounce off of, I have managed to stay on my feet.  I have "foot drop" in my right foot and frequently trip over the toe of my shoe, when the my leg is tired.  I know I need an "AFO."  (Just stubborn and don't want to give in to wearing one)

I would appreciate your thoughts and suggestions.  Walking like a drunk, is becoming more and more noticeable, all in the absence of alcohol, of course.  My legs are tired.  I don't want to give in too soon.  The longer I can stay on my feet before giving in, I think the better off I will be.  I am 55 years young.  I still have alot of places I want to go to and the picture I have in my head of me in a wheelchair in order to achieve that, is not what I want, of course.

Thanks so much,
Heather
13 Responses
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279234 tn?1363105249
I'm kind of going through something similar. I just got an RX for a cane. I plan on using it on my bad days...and maybe decorating so it doesn't seem so medical. I'm not sure how much I'll actually use it...I guess it depends on how much it helps.

If you are having problems, sweety, I would have a sit down with your doctor. Discuss your options on what would be best for you. By the way it sounds you need to have new MRIs of the spine.

I know it's a scary thought of using an aid. I feel like if I start to use one, I might never go back to the way it use to be. I think that's what scares me the most, but I do realize I need something otherwise I may hurt myself in the long run. If your not stable on your feet, you can fall over and break things and that's not going to do you any good.

Please know that I'm here for you if you need anything. You've help me a lot and I won't forget that. You have so much strength and I know that your strength will get you through this....and if you need a little help from some friends, you know where to find us :)

Helpful - 0
195469 tn?1388322888
Your words of comfort and understanding drove me to tears.  Tears of thankfulness that I have the backing of so many friends that really do care.  This Forum is where I have always come for strength and advice and it has not failed me in over two years.

All newcomers, you can be assured that these members are faithful and steadfast in their compassion and concern.  "Angels with Invisible Wings."

Thank you, from the bottom of my heart.  And to Quix, you are the one that originally brought me to this Forum over two years ago.  If it were not for you, I may have never found this Forum and what turned out to be the best group on the Internet.  Thank you Mamma Quix.

All My Love,
Heather
  
Helpful - 0
231441 tn?1333892766
Dearest Mamma Heather,

it is a big mental step to overcome with using a mobility aid, and no doubt you are fighting the whole concept as hard as you can. - very natural and understandable  However, the issue is that using the right mobility aid  should actually increase your mobility, and reduce the risk of falling.

Get referred to a good pt for appropriate strengthening, get properly prescribed and fitted.  It may be quite liberating to be able to move with a little less effort.

Hope your neuro can also help shed some light on what is happening and what needs to be done to reduce /slow down the impact.

Vent and rage against it all you need, but the fact that you are asking this question means that it really is time...

hugs.

S

Helpful - 0
220917 tn?1309784481
Hey, Earth Mother~

I'm so sorry you're so sad.  I'm sad for you.  This just *****. Big time.

I will say that I am grateful this very minute to have the walker I just got at the hospital this afternoon to get me through my work parking lot tomorrow when I return to work. Very grateful.  I need it.  And my husband is finally accepting it.

I don't want to have to use it every step for the rest of my life, though, which I understand you are saying.  My relapses keep getting closer and closer and never quite go away.  So I have that same fear.  

I received in the mail last week a form from my neuro a 'permanent disability parking permit.'  Permanent?  DISability?  I am NOT disabled, I am quite ABLE.  Well, occasionally.  On good days.  It hurt me for days.  Permanent?  He knows I will not get better.  Thanks for saying so in such a sensitive way, Doc.  Days....

I feel your pain Sister.  Mother.  I wish I could help more and better.  It just plain *****.  I think you need to talk to your doc, your man and maybe a therapist about it.  And we're always here.

Much love,

Zil*
Helpful - 0
405614 tn?1329144114
Hi, I don't have any advice; just wanted to offer you a hug and a wish that you find the right cane or other assistive device to make walking easier for you.

Hugs,

Kathy


Helpful - 0
Avatar universal
AMO
dear Heather,

it neverr is easy decission .
my   feeling , is iyour ar e asking the question , your heart probaably already knows.

please ddo not feel it is something you have an actaully choice. and never feel you havve 'giiven in   too early' what is too early?
when you comprosise energy and abilty to continue doing things you wannt, just because you need sometype of assisstance?
YOu may well be able to do mmore! just in a differnt way.

pleaee do not question that you do not giveee it your all, yoou have. you have a  sucky disease that changes sometime your needs.

i know you have strenght to accept whatever youuur body is telling you.

it's ok.
take good careee, amo
Helpful - 0
Avatar universal
I refused to use a cane. Crutches aren't exactly any better, neither is a walker. The walker is simply impractical, can you imagine having to lift that dang thing for every bloody step? A cane was never the right size, and way too unstable. The wheelchair would have been the only answer, except to me, the wheelchair represents ultimate defeat.

I've fallen several times, due to a condition not related in any way, shape, or form to MS. I've managed to irritate other body parts and have narrowly avoided very nasty head and arm injuries. Maybe I was being too stubborn. Thinking back, when the ankle collapsed and I was falling, the only thing a cane or crutch would do is land on me after I was down.  A walker might have provided assistance, or torn ligaments in shoulders and other parts on the way down.

Surprisingly, an ankle brace was the only thing I needed to stop falling, and now I don't need the brace except for long distances. Medical care by someone with a clue was the best response in my case.

With that said, I'm very glad to have the permanent handicapped plates. On days that I don't need it, I'll park in an unmarked stall. On days that I do, when I'm out of chocolate milk and that's the only reason I got out of bed, I'm very glad to have the extra assistance of someone filling the gas tank (required in CA), having the room to actually open my door without hitting someone else's car (unless they park illegally in the no parking zone next to the handicapped stall), using the scooter in the store, having the store clerk take the groceries to the car and driving the scooter back in, and getting home to the closet spot to my living quarters, to stumble the few steps back into the house and enjoy the chocolate milk.

A good physical therapist can set you up with the proper mobility aids and/or pursue a course of action to perhaps restore mobility. Good luck!
Helpful - 0
Avatar universal
HEATHER;

I HAVE BEEN DX'D FOR 11 YERS , ALWAYS LISTEN TO YOUR BODY.I HAVE USED A CANE OFF AND ON FOR 11 YEARS.

IN 2006 MY RIGHT FOOT DEVELOPED FOOT DROP , SO I STARTED OUT WITH A AFO , THEN IT GRADUATED TO A  KAFO, THEN THE LEFT FOOT THOUGHT IT WOULD JOIN THE RIGHT, I NOW HAVE A  AFO FOR THE LEFT FOOT.

IT CAME TO A POINT A  CANE WAS NOT ENOUGH FOR STABILITY OR BALANCE,SO WE ATTEMPTED A WALKER , NOT A GOOD PICTURE,RIGHT LEG HAS A FUNKY SWING TO IT, SO I HAVE CANADIAN ARM CRUTCHES,THEY KEEP MY BALANCE PLUS I ACTUALLY WALK BETTER AND IT HAS STRENGTHENED MY BACK SOME.

AN AFO WILL BENEFIT YOU , I HAD A HARD TIME WEARING THE AFO AND KAFO IN PUBLIC , ITS A MENTAL THING, THE ARM CRUTCHES THE SAME, HOWEVER THAT HAS PASSED AND THEY ARE A PART OF MY DAILY LIFE.

I HATE THE FEELING MY LEGS HAVE BEEN STUCK IN CONCRETE AND THEN TRYING TO WALK , I ALWAYS THINK OF THE ELEPHANTS WITH THE BALL AND CHAIN AROUND THEIR POOR LEG. THATS HOW MY LEGS FEEL.

I HOPE YOUR LEGS GET BETTER, I'M 43 AND WALKING IS AN OBSTICLE DAILY.

T-LYNN

Helpful - 0
195469 tn?1388322888
Thank you precious ones for your advice.  I have not had a spinal MRI in a year and a half, so I think that's the next step with the Neuro is find out if we can "see" what is going on.  My spinal lesion was always on the right hand side of my spinal cord...maybe it has gotten larger and invaded the cord a bit.  Or maybe I have a new lesion.

I will request a spinal MRI (on the 3T) with my Neuro.  Such better quality of pictures.

Thanks for all your advice.  It IS advice that I will take up with the Neuro.  Big Hugs from Earth Mother....God bless you all.

Heather
Helpful - 0
648910 tn?1290663083
Hi Heather,  my doctor RXd a cane last fall.  Like you I did not want to use it and most of the time I didn't.  But there were days when I had too.

I remember sitting in front of the grocery store and thinking I needed milk, but I knew I could not walk in without assistance.  That day I had to use the cane or do without my milk.  I felt uncomfortable, I am 49 yrs young...hit the big 50 this July :0)  But it did help and at least I did not fall in the store or feel like crying as I tried to find the energy to get back to  the car.  So I am like Shell, get you a cane and use it when you need it.  Using it in the house helps to conserve energy so you have more when you do go out.

I don't use my cane now.  I took 4 months of PT and it helped a lot.  I also got an injection of solu-medrol.  That really helped.  It felt odd to be walking correctly.  It has been a little over 2 weeks and the effects are wearing off.  I just went out and told the honey who is mowing grass to please get my dog tie out before he ran over it.  This is something I used to do, but as I told him, my legs are too tired to walk up the bank,  That ***** and even the cane would not had helped.  But walk when you can and use the cane when you need it.

My two cents, terry
Helpful - 0
198419 tn?1360242356
Hi Honey,

Heath, I didn't know!

Has this been gradual worsening? You say you've always had problems w/your legs, but how long have you been holding on, using support now, as a general rule? Guess I'm asking when this permancy started (I know you'd know if it was a flare).

I see your point not wanting to give in too early, but girl, if you fall (if you've not done so already) an bang yourself good it surely will be worse.

Intermitten assistance perhaps? Once in awhile? That way you don't feel you are giving in totally yet? Just a thought....stubborness (that gets us nowhere) but runs in the family, this side of the coast ....

(((green pollen hugs)))
Shell-the-Rookie




Helpful - 0
378497 tn?1232143585
Hi, Heather--

From what I've read, using a walking aide can actually help you a lot with the weakness because its support can save you some of the extra energy exertion that you're putting into mobility. That can help you keep going longer. Also, I've read that it helps with reducing pain because you're not torquing your body in funny ways to compensate for an odd gait or weakness in a specific area. So, if you're having these kinds of troubles, that might be an indication that an assisted walking device would be helpful.

Bio
Helpful - 0
739070 tn?1338603402
I,too, have leg pain and weakness. I am currently in my 8th week of PT. It has made a BIG difference. However, when I had my recent set back from suspected viral infection, my legs became weak again.

My very intelligent therapist, approached the subject of a cane with me knowing I did not want one any more than I wanted the handicapped sticker for my car.  She made a very compelling argument and reminded me that pushing an MS patient too far does more harm than good.

So, I bought a cane. There is a 45 degree incline to the entrance to my building. What a tremendous difference the cane made!! I did not have to stop halfway up the hill to rest, as is the usual, and was not out of breath for once. As a unwilling owner of a cane I still have to admit it makes a tremendous difference in my walking abilites.

I hope you can find an answer to your question that you can live with. I'm about as stubborn as they come and "giving in" to a cane has made such a difference. Perhaps, you should think some more about the AFO.

Wishing you peace and knowledge to find your answer.

Hugs,
Ren
Helpful - 0
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