How do you know it's time for a wheelchair?

[Sissy]

How do you know it's time for a wheelchair? Does it come on gradually? Do you just wake up needing one? Is it permanent?

Sometimes my back hurts so bad I can't stand up straight for more than 10 or 15 min at a time without excruciating pain. Either side of my spine below the waist feels like I am being forced to bend until I can no longer stand up straight.I am gasping in pain I can hardly breath. All I can do is sit or lie down.

This pain is fairly new. Only a few weeks. I have reg. back pain some time's but not like this. I can't do my housework, shopping or cooking without sitting down to do it! and that is very difficult to do sometimes.

My legs get weak and burn, then they get cold from the knees down. I feel like I am wearing binding socks and have to touch them to find I'm not wearing anything!

Sometimes if I can't get around enough my feet and legs swell and turn mottled red to deep red. I can't bear to have anything toughing my heel when I am in bed at night. At time's the sides of my heels, up to my ankles feel like the skin is going to tear or crack, like the skin is very tight and hard. And this is when they ARE NOT SWOLLEN...

I do not know any other way to describe it. My husband says he thinks it is spasticity. I have tried to figure out how to explain it to my Neuro next mo. I am taken Baclofen 4 x's a day. I have been feeling bad in other ways also, like being very tired and more confused. Achey and frequent MS Hug's.

I do not want to go to the hosp and leave my husband alone (He is 74 and has some mild cognative issues too). My daughter can't help, she works and cares for my grand-daughter who has Brain cancer and a sm.child.

[hunterd]

Before you invest in a wheelchair, maybe have a chiropractor adjust your back.(That is just an opinion from a nonmedical educated mind)
I also have the pain in the bottom of my feet by my heels. Talk to your neurologist about this. Talk to your GP about the blotchy skin colors (sounds like it may be Reynauds [sounds like mine anyway]).
When I did switch to a wheelchair, it was suggested by my boss (who happened to own the company), it was a little more than a suggestion, but that is how he put it. So it was an easy decision for me. I was very apprehensive about the switch, but in the end it enabled me to do much more. I had the stamina to do more than I had been able to in years! I also had the feeling of stability, which I had never thought of getting from a wheelchair. All in all, after about a week, I couldn't believe I had put off the decision to use a wheelchair for so long. Good luck to you.

[Jules A]

I don't have any suggestions but wanted you to know I'm thinking of you and your family and hope things improve.

[knuckle]

When your MS is putting limitations on enjoying life. More specifically, when you stop doing things, going places, you normally would have but your lack of mobility prevents you.

While a wheelchair is useful, you may also want to research power chairs as they are far more maneuverable in and outside the house. You don't have to push around a power chair, they turn on a dime, you can pull up to counters/tables. If you're outside the home you don't need anyone to push you.

They also make travel power chairs which dissemble to fit in a car trunk.

[Sissy]

I think I may have to consider a power chair as I have so much weakness in my hands and rt. arm. I am on my way to buy gro. and so dread even the thought of it! When I get home all I can do is sleep!

I know ahead of time so I am trying to plan for a very simple supper and pray that there are some elec. shopping carts in the store. I am only going because a friend has offered to take me with her. All I really want to do is sleep!

I lost my job because I could not stay awake. I fell asleep while talking to customers and while driving. I did not have a DX at the time. But have not been able to find a job since.

[gomer]

Hi Sissy..

For me it was my fam doc who made the decision FOR ME!
I was reluctant but did not fight it. I told my fam doc that it would be like giving in, giving up and admitting defeat. He assured me otherwise.

I was delivered on a Wed, but sat morning I was sitting in it and almost broke down. It was like my worst fear for years had arrived.

Over time I learned that by using my Jazzy (power-chair) part-time I did so much more and better even when not using it. Now its another TOOL of many (like scooter, cane, rolator etc) that makes life easier, less painful and more liveable. Mobility tools are not your enemy, or to be feared when you need them, they are your friend. (plus they rarely even complain...ha ha)

MY jazzy never leaves the house (no ramp), but I have a scooter that easily fits in my car trunk with tons of room to spare. It comes apart and goes together easy, no tools needed. I added a bigger basket, flag holder, cup holder and spare battery. It been to several civil war musters, Disney, Washington DC Mall, even over the ground around the tidal basin and of course local big boxes and malls etc.

Now SISSY Do Not Be SISSY, go for it!

Gomer Sir Falls-a-lot

[divaonwheels]

Definitely see about getting yourself a wheelchair. If you are dreading going shopping etc it may be time. It will be worth it with the strength it will save you. I am just getting my first power chair. I am actually sort of excited!

[sgrammied]

When I got mine. It was the Dr. who ordered I get one. Dr. gave me a script for it. I had to be evaluated for it from PT.

As for that much pain, I suggest you make an appt. with your PCP and tell him of sx you are having to rule out anything else beside MS.

[HereIam]

Interesting thread for me personally, as walking is so taxing and at the end of the day the pain in my legs is close to a 10. But, the neuro's been "use it or totally lose it" but agrees that those with the worst fatigue are the ones like me, who could benefit from a wheelchair but would lose so much from one.

I have no idea what to do, I figure my body will tell me when it just can't push any further. I don't drive anymore, so am home 24/7. Could be I'll use my wheelchair when out and about.

[gomer]

Sorry HereIam... but I am going to disagree on the use or loose it.

That is what I HAD always had been taught & thought my self. My fam doc ordered a PT evaluation. When the physical therapist did her evaluation, she noted in MY case (may not be for others) that I was over doing it with MY muscles and doing more harm that good.

I was barely able to walk across the room back then. After adapting to using my power chair part-time, my limited walking has improved.

I strongly suggest a physical therapist evaluation be a first step. BTW My medicare & gap ins covered my power chair 100% or as the TV ad says NO COST! (based on medical need)

My scooter for getting out and about was at MY cost. (a fraction of the P/C anyway) My ins did NOT cover for anything beyond daily at home needs.

I feared that once I began using a chair even part time, I would end up imprisoned by it, that was and is NOT the case for me anyway. Keep in mind, I found a BALANCE between using the chair and being on my feet, I did have to learn my limits.

Gomer Sir Falls-a-lot

[HereIam]

Thank you, Gomer, for your insight. After a day of walking, and remember this is only with my activities of daily living, around the house and yard, my calves and the front of my thighs hurt so badly I cry some times.

I did at one point think I need to walk more, strengthen these darn muscles, but that was a disaster of epic proportions.

I am afraid of losing my ability to walk about in the house doing what I do. But if I continue to do my indoor walking but always use my chair (it's manual) when I go out, then life could improve. I have a few times tested myself by taking a day of just sitting, no walking except to the bathroom, and WOW did I have good energy and no pain.

One of the problems is that when I do that stupid 25 foot walk for the neuro, I don't look so bad. I want to say to him, come on along, let's walk 100 yards THEN see what you think.

[gomer]

For me I found using my power chair some every day and walking some every day works best for me. I spend a lot of time in a basement man cave and shop.

I have a manual down here if needed, but use my P/C most of the time when upstairs (main floor). I do have limits as to how much of the time when I am downstairs I can be on my legs, so I sit a while, walk some and repeat. I do many things a little at a time.

Think small bites instead of huge chunks.

Gomer Sir Falls-a-lot

[owlnona]

Hi Sissy, I've had this MonSter for over 12yrs. I have gone from cane to wheelchair,but my PT worked w/ me & now I use a Rollator at home & wheelchair when out. I love my Rollator, if I get the least bit weak or what I just sit down.I have a "scooter" but it's way to big to fit in our car,so I just use it out side,as we have over an acre of land now that the cooler weather is here I get lots of Vit D! I'm so blessed to have a family who pushes me around everywhere. As we live just outside of DC I've been on all the "Fieldtrips".
You know you can rent one to just try it out & see if it helps. Keep us posted God Bless Nona Judy

[journeyman]

J-Man's opinion here.

With Gomer's assistance I went to a cane and then to a w/c. I was having pain in feet, needles in my feet, jello ankles and knees, numbness in both thighs. The cane was great but things got worse. Then before I went to an expensive wc I went to the thrift store and bought a great one there. Used it off and on for about six months. Things began to improve once they put me on Rebif.

I was on Rebif for two years. I got out of the w/c and went back to the cane. I eventually got off the cane. (Althought with all my "flat ground falls - non-ladder") I may be going back. I have one at my door and one in my car, unlike gomer who has one in every room - even I think the b/r.

Eventually I found that very short walks helped. My walks became longer but less often. I eventually found out I could walk great but could only stand a minute or two. It was tough for me to sit when everybody was standing. Especially in my church. I noticed that nobody noticed or judged me. So I just rest when I have to.

I am always talking about my raised garden. It was built 15-30 minutes at a time. So I have learned from Disney with my Grandson requires a w/c. Learn what you can and can't do and do it with pride.

Dave Tampa, Florida RE-visiting summer 90+degrees. Temp. definitely affects legs and everything else.
"Journeyman"

[HereIam]

It's always helpful to hear other people's methods of dealing with this monster.

My leg pain is horrible by mid day and then when I lay down at night it's a 10, at least it was last night. Tears.

Frustrating, as I am home full time and my passion is quilting, which requires a lot of time standing at the cutting table when starting a new project and building the pieces. I've down scaled to enjoying 1 hour of quilt work a day, as I cannot stand long enough to tackle hours. Cooking dinner is a challenge. I really don't care about cooking any more, it's pathetic.