I want to walk and be independent

[Yeshuasdaughter]

I have a few mobility related problems that maybe some of you can help with. I am 41 years old and in a wheelchair because of cancer related bone loss.

1. I am having a hard time learning to walk. My mother, brother, and ex-mother-in law are pressuring me to start walking more, and I genuinely want to. I know they do it out of worry and love, but without meaning to, they often shame me for being in a wheelchair, and some of the things they say really do hurt.

I already practice my walking every day, but for them, I have begun pushing myself beyond my means to try to walk, and when I really push myself the way they tell me to, I often fall down, and many falls have made me have to stay in bed for a day or two afterward. It's very scary when I fall, because I don't have the strength to get up, and even in the past week, there have been a couple times where I've had to yell "Help me, please! Somebody help!"

Do I continue pushing myself beyond what I know I can do, to try to be able to walk again sooner, or do I resign myself to going slow and steady, at the snail-like pace my body is telling me to, and it maybe taking a few years?

********

2. My house is set up really funny, where the kitchen is isolated from the rest of the floorplan, so I am unable to cook or wash dishes for myself. My teenage daughter has been cooking and cleaning practically everything for the past two years.

I really want to get involved in the meal prep. I cheerfully ask if I can cut veggies at the dining room table (a wheelchair accessible room), but she's seen me get overfatigued or hurt so many times that she almost always lovingly "shoos" me off to bed.

She loves her mama so much and is scared I'll get sicker if I help her.

********
Is there any way I can be involved in the household? Also is there a way I can be more physically active, even though my body seems to be telling me not to?

I'm still sorta young, and I want to walk and I want to prepare meals and be a real mom. I am on Autismforums all the time, for most hours every day, because I literally am laying in bed with nothing to do, and you guys are my only friends who talk to me right now. And those friendships, I hold deep in my heart, to the point that they bring me tears of joy.

But in the home, I feel so useless. I'm young-ish, and even though I'm weak and I tire easily, I feel like there's so much I can still contribute.

What would you advise?

 

[Suzette]

I don't have much personal experience to offer. Mostly what I know is from helping an elderly friend recover from hip replacement, so my point of view is limited to that.

I suggest a walker. With a walker, especially one with a built in seat, your legs do not have to take the full strain of your weight. If you have been in a wheel chair awhile many if your muscles have weakend and attrophied. Of course you need to use those muscles to build them back up, but you can't do it in one go.

You can walk on your own power within the frame of the walker, or allow the frame to take a little weight if you need. It's primary purpose is to keep you from falling and prevent injury. If your walker has a seat, you can rest a little if you need to on your journey. A walker might make other tasks, like cooking, easier so you can be more independant too.

I hope you are recovering well!

 

[Ronald Zeeman]

If you have access to a stationary bike plus walking with a walker may help to build your muscles up. I put in two walks a day slowly building the walking distance up, I still have good days and bad days. Improvements come in spurts, three steps forward one or two steps back.

 

[unperson]

Is moving an option, somewhere a bit more wheelchair friendly without a saggy bathroom floor, and a kitchen you can access?

I'm starting to get some leg problems due to aging and it's really annoying.

 

[Martha Ferris]

First have a conversation with your family. It is important for your mental health to be able to contribute. Explain that to them. Then you need to be firm about what you can do. Only you know your own body. Don't allow your family to pressure you beyond your ability. When they try remind them firmly that you are doing the best you can. When you do contribute keep in mind your abilities and try not to pressure yourself to do something that will have negative consequences for you. Having to spend days in bed after trying to meet someone elses opinion about what you "should" be doing is not constructive. Finally all you can do is the best you can do and if, at the end of the day, you can truthfully say "I did my best today" then accept it as a win. Best wishes to you.

 

[Nitro]

There was a time not all that long ago that I had to learn to walk again.
I laid in my bed in the nursing home and dreaded when I was lifted into my chair and pushed down to the physical therapy room.
I had a left arm that was merely a limp flipper, so I couldn't even move myself around.

One morning as I was being wheeled down to my therapy session it occurred to me that the only way out of my present dilemma was going to have to come from within.
That morning when my therapist gave me leg lift exercises to do, I decided to hit it hard. He asked for ten reps both right and left. When he returned to ask how I did, I reported that I gave him 20, both right and left.

I continued on that same course of giving him double of what he requested each time on every exercise he asked for.
Before too long, he decided it was time to get me walking again. Armed with a support belt to prevent me from face planting, he told me how far he wanted me to go. I was very wobbly, having not walked for several months but insisted that once again the goalposts were where I wanted them.
You guessed it, twice as far as he asked for.
We worked together, me with my own inspiration to leave the wheelchair as a harsh memory and to walk out of there on my own two feet and him seeing how much I wanted to.

The arm was a different story.
The nerve endings had been ripped from my spinal cord that completely shut down the mobility in one direction.
A nerve conduction specialist determined that and basically told me I would never have use of my arm again.
That was a severe blow added to my dilemma of very poor walking abilities.
Life as a one armed bandit didn't look favorable, but at least I could walk again.
Learning to walk again was a difficulty I was able to overcome, so now it was time to deal with the limp flipper.
Little by little, I worked that arm performing tasks around my home that required two arms. It hurt like hell, often for days afterwards.
In the beginning, I was proud that I could hold it straight out in front of me for a full minute. It shook very bad and it hurt like the dickens to do it, but it gave me hope.
As time went on, it gained strength in all of the directions that still had connectivity and began to take shape again. The limited motion was the ability to lift it straight up in the air but that left it when that particular muscle sheath was no longer functional.
It no longer goes all the way up now, but it is as strong as ever and I can now put it well above my head.


Having said all of that and knowing very little about your situation, I hope that maybe it will offer you the inspiration to attempt to rise above it and move forward with renewed hope.

 

[Skittlebisquit]

Echo on the walker issue, but all Walker's are not created equal. I am drawing a blank on the brand names right now. Net research indicates that the taller walker is likely not a good idea, as they are very unstable on rough terrain. We looked up a bunch for a friend at church.

Still blank on the names and types. But I have a thought, esp in a city your size, you should be able to rent one, rather than buy it. That would let you test drive a few. Let me see if I can find some pics and maybe a link or two, just of types and styles.

On the issue of your recovery, it's your recovery not anyone else's. It depends on whether you are going to get well. If you have decided to get well then you will likely want to walk. Do you do braces(gear) on your legs?

Dont get hurt, but yes push yourself. No broken bones! No big bruises either. You are likely supposed to be supervised when walking, but not by a kid, someone your height and strong.

The walker is a game changer, but not the old fashioned kind.

What a wonderful kid you have, she sounds just amazing.

Cooking in a chair is really dangerous! Everyone should try it, just to see, it's brutal...
Anyways it's probably good you are not doing it, it's too easy to get hurt. Fry pan is right in your face and the oven is horribly awkward, you have to be on the side of it, because of the door. First 6x9 lasagna and you will tweak your back.

Once upon a time, about twenty years ago there was this old woman named Flossy. She was in a chair. Me and my friends did for her, but it's dangerous in lots of ways. I would not do it again, with flossy there wasn't a choice.

We got a toaster oven, and a hot plate and a sturdy lab table (fireproof) and there was that. See she could roll up on it. There was also a hose on both the tap and the shower head in the bathroom. She washed dishes that way. On a little table by the tub. It's not safe, especially the electrical cords, those type of appliances draw alot of watts and thay can ruin cords and start a fire. With flossy she lived alone and just didn't care. She lived for about six years after the stroke, I think.

Aside from cooking, most folks get hurt in the bathroom, trying to get cleaned up. If you are using a plastic lawn chair in the bathtub then you can do better, lawnchairs are not safe.

I used to reccomend golden violin, it's likely still a place to start, they have a catalogue.

 

[Nitro]

This was Deuce, my walking buddy with my great niece.
Deuce and I traversed a huge property every morning, often stopping at the halfway point to rest and enjoy the day in the grass.
Deuce is no longer with us in flesh, but will remain in my memory forever.

 

[Magna]

My heart goes out to you, YD! I'm not a doctor, but pushing yourself like that if you're prone to falling is not good. I would worry that you might break a bone and that would really set you back in your recovery.

What does your doctor say? Do they have you doing physical therapy? Are there other leg exercises you can do from your wheelchair or even lying down that can help strengthen those muscles in addition to walking a bit?

Your daughter sounds like an angel from Heaven.

 

[Skittlebisquit]

Drive Duet Rollator/Transport Chair

This is the style here. Not the super tall one(rollator) and not the crappy foldup kind.
Locking brakes, sturdy seat, adjustable handles. There is a specialty shop here that rents them, there are cheap ones from Walmart, but I'm saying no on import substandard equipment here. Let's start with finding a place to go and see, local to you

 

[Suzette]

Drive Duet Rollator/Transport Chair

This is the style here. Not the super tall one(rollator) and not the crappy foldup kind.
Locking brakes, sturdy seat, adjustable handles. There is a specialty shop here that rents them, there are cheap ones from Walmart, but I'm saying no on import substandard equipment here. Let's start with finding a place to go and see, local to you

This is exactly what I was thinking of. You read my mind. : )

 

[Skittlebisquit]

Nitro is a machinist and fabricator, I've been a professional welder myself. I say ask your friends about the descriptions of equipment you find advertised and see if they approve of it. Something cheap and flimsy that's going to break is likely a poor choice

 

[Skittlebisquit]

This is exactly what I was thinking of. You read my mind. : )

Sounds like we have had common experiences. It's the right style anyways. It actually seems to be priced too low, that particular one, which indicates it's likely a cheap copy of an American or German product

 

[Skittlebisquit]

I remember paying $650 for an american made unit, but that was a steel frame. Most of the ones you see are aluminum frames. Apparently the issue with the taller style is that they are unstable on rough terrain and really difficult to put in a car. I think field trip, go and see

 

[Nitro]

Part of my point of my post was that it required assistance at first with the added determination to walk again.
It wasn't easy by any means, but did require assistance at first.

A good walker sounds like a great idea, but please remember that at first to not attempt any of it alone.
My first night in the nursing home was interrupted when I attempted to get out of bed alone to use the toilet.
I couldn't talk yet and with a fresh TBI, my senses weren't in order enough to ring my alarm bell so I tried it on my own.
I abruptly hit the floor and smashed my already damaged head off the floor. I also had my jaw healing from four fractures, so I was loaded back into an ambulance for a ride to the trauma unit I had just been released from.

The moral of that story is to not let your pride overcome your common sense

 

[Suzette]

I remember paying $650 for an american made unit, but that was a steel frame. Most of the ones you see are aluminum frames. Apparently the issue with the taller style is that they are unstable on rough terrain and really difficult to put in a car. I think field trip, go and see

Another idea for the nicer units is to check your local medical supply houses, ask if they are selling any used rental equipment. I got my knee walker this way. I paid $25 bucks for a $350 unit. It was a litte dinged up cosmetcally, but I could roll it where no Amazon knee walker could go and it turned easily. I digress. What I found out is that rental units often get sold when they are no longer pretty or the company is buying upgrades.

 

[Nairobi]

I have a few mobility related problems that maybe some of you can help with. I am 41 years old and in a wheelchair because of cancer related bone loss.

1. I am having a hard time learning to walk. My mother, brother, and ex-mother-in law are pressuring me to start walking more, and I genuinely want to. I know they do it out of worry and love, but without meaning to, they often shame me for being in a wheelchair, and some of the things they say really do hurt.

I already practice my walking every day, but for them, I have begun pushing myself beyond my means to try to walk, and when I really push myself the way they tell me to, I often fall down, and many falls have made me have to stay in bed for a day or two afterward. It's very scary when I fall, because I don't have the strength to get up, and even in the past week, there have been a couple times where I've had to yell "Help me, please! Somebody help!"

Do I continue pushing myself beyond what I know I can do, to try to be able to walk again sooner, or do I resign myself to going slow and steady, at the snail-like pace my body is telling me to, and it maybe taking a few years?

********

2. My house is set up really funny, where the kitchen is isolated from the rest of the floorplan, so I am unable to cook or wash dishes for myself. My teenage daughter has been cooking and cleaning practically everything for the past two years.

I really want to get involved in the meal prep. I cheerfully ask if I can cut veggies at the dining room table (a wheelchair accessible room), but she's seen me get overfatigued or hurt so many times that she almost always lovingly "shoos" me off to bed.

She loves her mama so much and is scared I'll get sicker if I help her.

********
Is there any way I can be involved in the household? Also is there a way I can be more physically active, even though my body seems to be telling me not to?

I'm still sorta young, and I want to walk and I want to prepare meals and be a real mom. I am on Autismforums all the time, for most hours every day, because I literally am laying in bed with nothing to do, and you guys are my only friends who talk to me right now. And those friendships, I hold deep in my heart, to the point that they bring me tears of joy.

But in the home, I feel so useless. I'm young-ish, and even though I'm weak and I tire easily, I feel like there's so much I can still contribute.

What would you advise?

I am trying to drum up the energy to ask for advise on my own health problems here, but who knows when that will be. I feel very strongly that you should not push yourself beyond what you feel is your limit - those falls can lead to a hospitalization or further bed rest, and that could lead to secondary complications that could make your life far harder than even now. I wish that you could get the help of a physical therapist for appropriate exercise for walking. And I wish you could get the help of an occupational therapist for better outfitting your home and activities so that you can re-engage in a safe way. I feel for your troubles, I'm glad you have beaten cancer, and I hope you find your way upward and out of this dark tunnel. Or maybe I am projecting, I feel like I am in a dark tunnel right now, though your circumstances sound much more challenging than mine at the moment. I hope you get lots of good and helpful advice here, and I'm glad you are staying connected to virtual friends here, it's important.

 

[Suzette]

I am trying to drum up the energy to ask for advise on my own health problems here, but who knows when that will be. I feel very strongly that you should not push yourself beyond what you feel is your limit - those falls can lead to a hospitalization or further bed rest, and that could lead to secondary complications that could make your life far harder than even now. I wish that you could get the help of a physical therapist for appropriate exercise for walking. And I wish you could get the help of an occupational therapist for better outfitting your home and activities so that you can re-engage in a safe way. I feel for your troubles, I'm glad you have beaten cancer, and I hope you find your way upward and out of this dark tunnel. Or maybe I am projecting, I feel like I am in a dark tunnel right now, though your circumstances sound much more challenging than mine at the moment. I hope you get lots of good and helpful advice here, and I'm glad you are staying connected to virtual friends here, it's important.

I think that was the right message.

 

[Progster]

You could make a list of all the activities you can do from the wheelchair in the parts of the house you have access to, then talk to your daughter and work out a schedule for those activities. Tell her that it's important to you that you contribute and it will help your recovery.

As for the activity, you obviously need to talk to a physiotherapist as to how far and how often you should exercise, but I think that if you want to walk again normally, you'll need to push yourself - bone and muscles become stronger with use and it should improve with time.

 

[DogzSpirit]

One thing stands out on the physical area, as it applies to you wanting to walk again. There shouldn't be any risk of injury and you should always have someone within arms reach to spot you as you take those steps. With that in place, you have removed that risk of injury. Since your family is so charged up for you to walk more often, they should be equally as enthusiastic in being there to spot you for those sessions.