things seem very grim

[RockysMom]

So I'm still in rehab now, been away from home over a month. Broken ankle getting better but can only stand for one minute before I'm ready to collapse.

Insurance co. says goal is to get back to where I was before this happened. But that would just put me back in this situation because the way I was before wasn't sustainable. I could only stand for about a minute and then made a controlled fall onto my scooter, then to bathroom or recliner which I was barely able to get in anymore. I can't go back to that because that was a dead end.

I can tell how I feel in PT after standing between the bars for one minute, that I can't do it any longer and I can tell I won't be able to ever walk again. I can't go to the bathroom, just wear disposable underwear and have an aide change me while still in bed.

My husband will not be able to care for me either. So I'm thinking this is the end of the road for me, living in this nursing home. What is to become of me? Is this it? The PT/OT gals keep pushing me and saying I have a negative attitude but optimism can be a fool's way when I can tell my body has no more to give and no way could I even stand without those bars on either side of me. I have MS and it's not a matter of willpower or I would be home!

The Tysabri has restored strength in my weak left arm and hand but not seeming to help with my gimpy right leg which is why I can't walk. I feel I will never be able to walk again, it's just how the weakness feels to me. What will happen to me? I've been here a month now, how long will it be? Can I even go home?

[RockysMom]

I posted this because I thought my other post failed

This nursing home I'm in has spotty wifi...

[mjan]

OH dear, your post is heartbreaking.. I am so sorry hon !!

So it seems you cannot convince the therapists that your "normal" will not be walking or standing and they don't believe it, right?

What were you able to do before this ankle fracture ? Could you transfer to bathroom, bed before?

Again, I am here for you.. sending you a warm hug!

Warmly, Jan

[SNOOPY]

Hi RockysMom,

I am sorry for what you are going through

I broke my ankle several years ago. As my Orthopedist phrased it, my ankle was shattered. I had surgery. I have a plate and 3 screws on one side of the ankle, 3 pins on the other side of the ankle and wire tying it all together.

Once I figured out how to manage on my own my husband did not need to help me and was at work during the day.

I was non-weight bearing for 7 weeks. I needed to use a wheelchair to get around the house, learned to use a walker to transfer and be able to use the bathroom.

A Physical Therapist started coming to my home, once a week, shortly after I came home from the hospital. My PT focused on upper body so I would not lose strength. When appropriate she worked on leg strength.

Even when I was weight bearing again I needed to relearn to walk again. Some of this process was done at home with the help of my PT.

Once I was able to drive again I went to a Physical Therapy Facility. I did so for approximately one month at which time the PT that had been working with me told me I wasn't going to get any better than I was at the moment, so no reason to continue PT.

I was extremely pissed off. I was no where near were I was before the ankle broke.

As I was driving home and thinking, NO this is NOT the best it's going to get. I simply refused to believe it. In all of that anger came the determination to prove that PT wrong.

It took me two years, on my own, to finally prove the PT wrong. Two years. But, I did get back to where I was.

The PT/OT gals keep pushing me and saying I have a negative attitude

Maybe they are right and maybe you need to try a different way of thinking and believing.

optimism can be a fool's way when I can tell my body has no more to give and no way could I even stand without those bars on either side of me.

I'm not going to argue about optimism. You don't know what your body can do unless you keep trying and keep pushing.

Those bars are to help, for safety, as you try and regain mobility and strength.

Stop saying I can't. If you need to get angry for you to keep trying then find that anger and let it motivate you.

I have MS and it's not a matter of willpower or I would be home!

Sometimes. Sometimes it is about willpower even if you have MS.

RockysMom, I have been told that I do not come across as warm and fuzzy and many times I would agree. My warm and fuzzy for you was in the very first line

I really do believe you don't need warm and fuzzy right now. I believe you need to be pushed.

I have to tell you, if you put everything you have into regaining strength and endurance you will feel such an accomplishment that will have you smiling ear to ear.

Fight RockysMom. No one can do this but you.

Take care

[RockysMom]

Thank you Jan. before I would stand to get on my scooter, then either bed, toilet, shower bench, bed, power chair, or Bruno Valet in my van (but which I've only been able to use twice before I broke my ankle.

I did talk with the PT gal about lowering the goals and after she got the complete story, she agreed and now we're on the same page and she's my case manager now.

So I fel better and now hope to be home just before Christmas or early January at the latest. I think I need to be in here for the first three months of being on Tysabri to take advantage of its effects. And I'm prepared for that.

[RockysMom]

SNOOPY

I accidentally post this topic twice because the wifi here burped and I thought the post was lost, the other post is called 'Optimism can be foolish' but I'll paste my latest post to that here which gives you a better idea of where I was for the previous 16 months before breaking my ankle. Then would you mind terribly telling me your thoughts with this in mind? I am so very depressed for many reasons completely unrelated to MS and appreciate your perspective. Thank you.

"Thank you so much for your words of encouragement.

The situation is this: in Sept 2013, I was walking. Not a whole lot, using the rollator. Went out with hubby and dogs, came back, fatigue hit. I fell at in the foyer between doors. Managed a way to get up but was afraid ever since then so I took my scooter everywhere from then on.

Would stand to get on scooter from bed, scooter to and from toilet, scooter to and from recliner, scooter to and from power chair in my office. Right leg had always been weak but became weaker until I could no longer get in our van. Had Bruno Valet turning seat installed in August but had been unable to go to doctor all year because of these problems. Standing to get back onto scooter became controlled falls after stand pivots.

Lot of time spent in bed, sometimes days at a time because hubby had to run long errands. But also had strong days. Then this past Sept., fatigue became worse, standing became harder and harder until I finally fell while getting off toilet to get on scooter, broke ankle on my good leg.

So here I am. Do you think I could really get back to walking after not having done it in a year+ with PT and Tysabri?
"

[SNOOPY]

Hi RockysMom,

Thank you so much for your words of encouragement

I honestly didn't expect you to take my comments as encouragement but I did mean it that way

I understand the fear of falling. I have lost count of the number of times I have fallen. When I broke my ankle the fear of falling became overwhelming and I stopped doing a lot of things that brought me joy, one of them was going for walks.

Each of us has a different experience with this disease.

Do you think I could really get back to walking after not having done it in a year+ with PT and Tysabri?

I can only answer your question based on my own experience which may or may not work for you.

When I was diagnosed I was 24 years old. I had lost my ability to walk (bilateral leg weakness) except for the very minimal. My Neurologist told me the best thing I could do was walk . He saw the look on my face and said, I know it doesn't make much sense since you can barely walk now, but it will help.

I started out slowly, careful not to get too far from home. I would walk into the house needing to sit before I fell, in pain, exhausted and in tears. I continued to go for walks and each time I had the same, pain, exhaustion, barely able to stand and tears, so many tears.

For all three of my severe exacerbations I went through the same experience. Each time I would try and walk I would swear at my Neurologist under my breath but I am so thankful for his advice.

It took me a year to regain my mobility after each of the 3 exacerbations and 2 years after I broke my ankle.

I have used PT a few different times to try and maintain what mobility I have. I continue to use the PT exercises I learned as well going for walks, an elliptical and I now weight train.

Before MS I was not interested in an exercise routine Now exercise is very important to me.

Sometimes not exercising can be more harmful when dealing with MS.

Sometimes MS has done too much damage and for those people doing what I have been able to do would not be possible.

RockysMom, I'm not saying it would be easy because it's not but yes, it could be possible for you to regain mobility. You will need to have patience and be prepared to get frustrated, angry, upset and cry. This process, if it works, takes a lot out of you emotionally.

Try, RockysMom. You won't know if it's possible for you unless you give it all you can.

Blessings, RockysMom

[poppydarling]

Oh, I hate this for you! Sounds like you had a better session with the PT today? I know my mood can change hour to hour some days, and like other posters have said there is a lot of frustration and tears just trying to move. Then I wake up the next day with more hope and a little more strength and then up and down it goes. After a big flare up four years ago, you can say I'm "still walking" but I'm basically dragging my right leg and foot, butt out, while clinging to the Rollator in the house — but I still consider that I'm walking and still think it's important to do

What does your doctor say about his/her hopes for the Tysabri? When I was on it, I felt terrific, and I hope you feel the same. Sending you big empowering virtual hugs!

[RockysMom]

So the reason I cant go home now is...

Because I can't go to the bathroom. One or both of our bathrooms need to be modified so that I can transfer to the toilet without standing. If I could, I could go home right now. But I can't.

I should be able to get back to how I did things before which was standing to get on my scooter and then chair, toilet, etc. I keep having to educate my PT case manager that I was having a relapse which didn't receive any treatment until my first Tysabri infusion 10 days ago. That keeps getting forgotten and meanwhile she has a lousy sense of humor. Really lousy.

I do hate the standing exercises with her. She doesn't want to explain anything to me, just afterward tell me what I wasn't doing right after I've wasted energy when she could've just explained it and I could have had a more efficient, educated effort. I wish I could go back to guy who was helping me before but they keep sending him off to another facility part of the day because their case load is low.

But the OT guy explained some stuff to me today which helped a LOT. So at least I still get to work with him. But I did tell the PT gal I want to stay here through my third infusion or if I get better before then. How can I explain to the women therapists I work with that I benefit immensely from understanding the exact mechanisms involved so I can use my mind while I make an attempt to stand. Is that so wrong or is she just wanting to write me off as having plateaued and say she can't help me anymore?

[SNOOPY]

Because I can't go to the bathroom. One or both of our bathrooms need to be modified so that I can transfer to the toilet without standing. If I could, I could go home right now. But I can't.

Is this due the ankle (non-weight bearing)? Or is it more an MS thing?

If it's due to the ankle, I learned to use a walker (no wheels) to "walk" on one leg. This allowed me to transfer from wheelchair to the toilet. Not easy when leg weakness is already a problem but doable, at least for me.

[RockysMom]

It's because...

Right now I can't stand without the standing bar things they have in the gym. And right now I'm only stand for 60 seconds top. To use our bathroom at home, I can't do a non-standing transfer because I can't get my scooter or power chair, etc. in the bathroom.

[SNOOPY]

RockysMom, I don't know if I am explaining myself right or if I am misunderstanding your situation.

If you get the scooter to the toilet and use a regular no wheels walker it is possible to transfer, even with one leg. to the toilet and back.

I did this type of transferring when I broke my ankle. I only had one leg that I could stand on and would scoot my good leg with the support of the walker.

The walker offers the stability similar to the bars you are using.

If you want to try transferring as I have explained ask your PT. The PT can show you and help you.

[RockysMom]

Hi Snoopy

Right now I can't stand except when I'm in the gym between the parallel standing bars which I can use for support. I can't use a walker.

At home, my bathroom is too small for the scooter, so I would park right outside the door and stand long enough to pivot so I could get on the toilet. Right now, I couldn't do that because I don't have those two bars for support.

However, today I did better with my standing although I didn't stand any longer, I had better form standing and sitting so now I feel more relaxed about it. So yay!

[KatieAgain]

Right now I can't stand except when I'm in the gym between the parallel standing bars which I can use for support. I can't use a walker.

At home, my bathroom is too small for the scooter, so I would park right outside the door and stand long enough to pivot so I could get on the toilet. Right now, I couldn't do that because I don't have those two bars for support.

However, today I did better with my standing although I didn't stand any longer, I had better form standing and sitting so now I feel more relaxed about it. So yay!

Sounds like emotionally that you are in a better place. This is all going to take time. In the meantime, can your bathroom be modified to accomodate your needs?

[SNOOPY]

today I did better with my standing although I didn't stand any longer, I had better form standing and sitting so now I feel more relaxed about it. So yay!

Awesome RockysMom!