I want to walk and be independent

[Nairobi]

I would like to add to what DogzSpirit has said - if your family is so charged up for you to walk more often, they should really help you get access to as much physical therapy as you need - I had a much less serious issue recently, but it was impacting my ability to sleep and work and - well, do a LOT of things, actually. I finally went to a PT and they started helping me from day one, it was like magic. I know walking is much more complicated, but a good PT is truly expert at strategically helping you reach your goals.

 

[Streetwise]

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?

To adjust get some pre chopped vegetables(just you being independent give your daughter an idea that you could be independent) , if your insurance will allow get an elbow crutch , also a leg brace which will go from your hip down to your foot, will take the place of your complete! leg from hip to foot ,it's usually made for broken limbs, what you really need is advice from a rehabilitation specialist on how much you can do, based on your muscle tone at the moment! You can get a small hand rail that suctions to the wall ,so that you don't have to try and balance on both legs you can grab and the handrail will take the pressure off your leg that has lost some of its bone.
You may have a hand rail in the shower!

 

[Sherlock77]

@Yeshuasdaughter

I don't really have any advice because I've never been in this situation before, but I do know that physiotherapists do rehab of things like that, are you able to access that? I assume you are still interacting with doctors...
And I do hope you find a way to walk again, but just be patient and work through the process...

 

[Suzette]

Just another thought, if you receive medicaid or medicare, home visits from a physical therapist should be covered as well as walker rental. (But you probably already know what your insurence covers) I am not a know it all, I just want to help.

 

[Streetwise]

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?

If you don't already get chilled meals or frozen meals, that you can heat in some form of cooker !it will give you independence!

 

[GadAbout]

Somebody said it's dangerous to cook from a chair. Maybe so, but I cook from a scooter all the time. It sits just a little higher than a wheelchair. I don't have any trouble and have never been hurt doing it. I do drop a lot of stuff on the floor, though!

If you want to participate in food prep, take the parental tone of voice with your daughter. "Bring me the tomatoes and zucchini, a cutting board and my chef's knife, please." And don't take no for an answer! Maybe you can explain that it's good occupational therapy for you, both for hand strength and improving your sense of efficacy.

 

[SusanLR]

The rolling walker with a bench was the greatest thing I used during my month's stay in a skilled
nursing facility ten years ago after major cancer surgery.
I had to learn how to re-walk also.

Although the first week I was in a wheel chair. But, thankfully still had strong arms, I could get around
in the rehab place easily. Physical therapy twice per day also.
Then I was graduated to the rolling walker. Insurance bought it for me and I still have it stored in a
closet. It was one of the strong steel ones and the bench came in very handy as I had to sit on it
to watch TV or use the computer.
Sinking into a regular couch or chair was too painful after all the surgery.
I was then graduated to a cane and my therapist put the belt around me to steady me.

I was caregiver for my Mom at that time and had her in a group home while I had the surgery
and rehab.
It is a journey,but, you can do it. Just be careful while pushing yourself to do more.
I'm having trouble with walking and balance now and don't know what it is.
Seeing a spine doctor Wednesday.

Good luck to you. Be well.

 

[Suzette]

And good luck to you as well SusanLR.

 

[Aspychata]

Sorry to hear of your frustration. You want to please family, you want to be useful and relieve your daughter's daily chores.

I was wondering since lately with the falls it get frustrating and discourages you , to perhaps have a chart where you can print out a weekly progress of where you are walking to and how long you spent, then family can see this and compliment you in this. Very importantly, you can choose your path of where you are walking to, say the hall or your bedroom door, this way you have put your limitations on paper but you have inspired yourself with goals to work towards. So the chart informs family members and inspires you. You can even put gold stars for big achievements. If you fall down, put it on the daily chart so they don't pester you too.

I had a broken ankle, l finally graduated to shoes, l wore a boot with a slight heel and this kept me leaning forward and help me from falling backwards. Make sure you wear sturdy shoes when trying to walk. Really hope you can walk again and l am sending a giant virtual hug to you.

 

[Suzette]

Sorry to hear of your frustration. You want to please family, you want to be useful and relieve your daughter's daily chores.

I was wondering since lately with the falls it get frustrating and discourages you , to perhaps have a chart where you can print out a weekly progress of where you are walking to and how long you spent, then family can see this and compliment you in this. Very importantly, you can choose your path of where you are walking to, say the hall or your bedroom door, this way you have put your limitations on paper but you have inspired yourself with goals to work towards. So the chart informs family members and inspires you. You can even put gold stars for big achievements. If you fall down, put it on the daily chart so they don't pester you too.

I had a broken ankle, l finally graduated to shoes, l wore a boot with a slight heel and this kept me leaning forward and help me from falling backwards. Make sure you wear sturdy shoes when trying to walk. Really hope you can walk again and l am sending a giant virtual hug to you.

The chart idea is great. For able bodied people it can be really hard to visualize how difficult mobility struggles are. Seeing small gains charted might help them to understand exactly what you are experiencing.

 

[Yeshuasdaughter]

Thank you everyone for the advice. It means a lot. My family probably won't come over to help me walk. It'll still just be me, and that's alright. They're sort of the "choir from afar", with lots of unsolicited advice, but never actually coming over to see how things are. They mean well, but it's just the way things are.

 

[Ronald Zeeman]

It's got to come from within, I'm tiring to reconnecting my brain to existing nerves that were not damaged during the stroke, just disconnected.

My doctor is older, not totally on board on brain plasticity, I've noticed a lot of doctors have no respect for the various therapists.

 

[ForestGumpett]

Can you get some strength in your arms firsts? I’m not that mobile, not in a wheelchair like you are though.

First, I wouldn’t allow family to push. It’s not their body that will suffer.

Second, if you want to try, start small. Get some light hand weights and just sit where you usually do, even if in bed and hold the weights and move around. Take baby steps and I also like the chart idea with goals.

At home I use a rower, I also fall and this is much safer. Was thinking that maybe if you got your arms to where you could get up and down with the strength then a rower could possibly be next?

Wish you the best (((hug)))
Will keep you in my prayers

 

[Suzette]

Can you get some strength in your arms firsts? I’m not that mobile, not in a wheelchair like you are though.

First, I wouldn’t allow family to push. It’s not their body that will suffer.

Second, if you want to try, start small. Get some light hand weights and just sit where you usually do, even if in bed and hold the weights and move around. Take baby steps and I also like the chart idea with goals.

At home I use a rower, I also fall and this is much safer. Was thinking that maybe if you got your arms to where you could get up and down with the strength then a rower could possibly be next?

Wish you the best (((hug)))
Will keep you in my prayers

Oh! You just reminded me of a PBS show called "Sit and be fit". It aims to help elderly and wheel chair bound people be fit.
It is a great way to start some mobility exercises without risking injury and the guided exercises are easy to do. Yeshuasdaughter, you will be bored in a week but getting stronger.

 

[Yeshuasdaughter]

Thanks everyone for the support and advice! It's really helped.

This evening I laid in bed wide awake and full of energy, so I went in the living room and hooked up the TV to YouTube.

I found this great channel on there called "Adapt To Perform", and there were all these wheelchair users doing workout videos. They were very autism friendly. No talking. No loud music. It was almost silent except for peaceful music and the quiet moves of the wheelchair users.

I feel so relaxed and all my body got a good workout.

 

[Suzette]

I found this great channel on there called "Adapt To Perform", and there were all these wheelchair users doing workout videos. They were very autism friendly. No talking. No loud music. It was almost silent except for peaceful music and the quiet moves of the wheelchair users.

That is cooler than 'Sit and Be Fit".

 

[Yeshuasdaughter]

So, I was just in the dining room, trying to make a big salad, and my daughter was swooping under me constantly, trying to get me to give the task to her. It was so sweet. I firmly shooed her away, and used it as a cooking lesson, teaching her how to make a good salad. I also occupied her by continuously giving her little snacks of veggies and chicken.

Finally, I let her cook the rice, since the kitchen is kind of separate from the rest of the floorplan.

She's so loving and protective. I tried to explain to her that it makes me stronger to do the things that I can do, and push myself. I gave a bunch of examples on things I've done since I've been feeling stronger, and I said I'll never get all better if I am in bed all the time.

And then I reminded her of how she has been helping me regain the ability to walk, and asked if she remembers how I'm going faster and faster, further and further. Then I couldn't help but thank my little sweet heart, because she's the one who has been helping and coaching me along.

I said "I'm not the same lady that was laying in bed, barely able to whisper half a sentence. I am feeling better and better, and the only way for me to get all better and walk again, is to exercise and do the things I'm able to. I shouldn't stay in bed all day, like you want me to."

She frowned a little and said, "But that's where I know you're safe."

I then explained that I want to weld the doors and all the windows shut when she turns 18, so that she'll never leave and I'll know she's always safe.

She then laughed at that and nodded and replied, "But then we couldn't breathe." I think there's another message in that reply that we all could learn. If someone is too protected, they'll never really be able to breathe.

Bless her little heart. She's the kindest person I've ever known.

 

[Yeshuasdaughter]

For anyone in the cancer journey, whether trying to recover naturally, or as a complement to Chemo etc, I suggest essiac tea.

Every time I drink it I have so much natural life force energy, and if I drink it every day for a few weeks, I feel strong and can do most things normal people can do. It's very, very amazing stuff.

When I was very ill, going thru oncology treatment, I started drinking it, and very quickly started recovering.

It's a 4 herb mix of Burdock Root, Sheep Sorrel whole Plant, Slippery Elm Bark, and Rhubarb Root.

It detoxifies, and the sheep sorrel root has been shown clinically to shrink/starve cancer. It is very, very strong, and very gentle medicine. I don't know where I'd be without it.

 

[VictorR]

Are you able to get an exoskelton perhaps? (and if finances might be an issue - to see if there's a university doing a study that might be able to set up up free or subsidized)

 

[Yeshuasdaughter]

Are you able to get an exoskelton perhaps? (and if finances might be an issue - to see if there's a university doing a study that might be able to set up up free or subsidized)

Like an insect? I don't understand. Please explain.