things seem very grim

[Windwalker]

I have reviewed this thread and wanted to answer this question directly.

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?

YES !

Also, you have to start getting on a toilet of some kind. If I can do it, you can do it.

Inactivity will hurt you. You have to do what you can. Standing for a full minute is good. Can you do it 5 times a day? Try.

You seem to be in a situation that is very counter to positive thinking. If you have PT's available, take advantage of every minute they give you.

I hope you can get yourself back home...I think that would help a lot.

All I can really say is to keep fighting...that's all I have.

[RockysMom]

!!!!!!VICTORY IS MINE!!!!!!

The same manager who upset me so badly the other day with her brusque, insensitive announcement that my bunnies were outlawed from this facility just came in and told me after reading an appeal letter I wrote to the facility administrator to be forwarded to the company COO and chief nurse, I now have been given me permission to have my bunnies visit!!

Kimba22 I so appreciate everything that you took the time to write and I'm so sorry that you lost sleep over this situation. Tomorrow I will discuss with the social worker about exactly when I should go home. I will reread your post many times here this evening and in the following days.

Windwalker I am thrilled to hear what you have told me. I I have my second Tysabri infusion in a few days.

I am really relieved and excited now and actually just too excited to write much more right now. Kimba22 I am taking your words very much to heart and I will be discussing what's best for me tomorrow because I do want to know exactly what the deal is. I had told them that I wanted to stay here for my first three infusions to take advantage of everything. So perhaps I will do that. I don't know if things are in motion that cannot be undone now or not but probably they are not.

I'm sure I will be back with more questions and things and I should probably start a new thread at that time. Thank you all everybody here so much for all of your time and concern. I'm so happy that I stood up for the bunnies and fought for the right to see them and I have won!

[RockysMom]

I did find out that:

--I can go home for up to four hours a day, that is, I can leave for four hours and I only live 2.5 miles away. So that way I can go home to see and groom my pets and come back and it will be easy to transfer to my van seat which is a Bruno Valet automotive turning seat I've only used twice. But also bunnies and doggies can visit me here as well as one cat.

--I did get training today in transferring to a bedside commode and I was able to do that well although it was very tiring. I like the demo commode they have too.

[RockysMom]

OMG Kimba22

I totally forgot to say that it was your most recent post with all of the information on how these places run etc. that inspired me to go down and talk to the facility administrator and then intern write a letter to him to be forwarded to the company corporate office which is also here in this town. This company owns a total of five nursing homes three of them in the state two in the neighboring state.

Anyway it was you directly inspired me to address the situation and because of that it was resolved so I hope that this is pleasing to you and you feel much better because because of your help I will be probably staying here for what I had originally intended. It was because of your post and all the time you put into it that spurred me to do something! I can't believe that I didn't tell you this earlier I'm so sorry.

THANK YOU!!!!

[Kimba22]

I totally forgot to say that it was your most recent post with all of the information on how these places run etc. that inspired me to go down and talk to the facility administrator and then intern write a letter to him to be forwarded to the company corporate office which is also here in this town. This company owns a total of five nursing homes three of them in the state two in the neighboring state.

Anyway it was you directly inspired me to address the situation and because of that it was resolved so I hope that this is pleasing to you and you feel much better because because of your help I will be probably staying here for what I had originally intended. It was because of your post and all the time you put into it that spurred me to do something! I can't believe that I didn't tell you this earlier I'm so sorry.

THANK YOU!!!!

You are so very, very welcome!!!

I'm thrilled to hear you won this victory!!! Can't tell you how happy it makes me I could share information that helped inspire you to do what you did (plus you'll now have more furry visitors!). That must've been pretty humbling to that manager to have to tell you that you now had permission to see your bunnies, too. I doubt she ever saw that coming. Maybe they'll consider having their rules in a welcome packet in the future?

I'm also glad to hear you'll be making some visits home. Not that it won't make wish you weren't staying home, but it still will be nice to be back in your own surroundings for just a little while! And nothing whatsoever should be final about discharge, so don't let anyone tell you otherwise. I'm just relieved to hear you'll be staying longer!

It's good you plan to discuss what is best for you and learn everything you can. I hope they'll do everything they can to avoid any unnecessary surprises. Although, it's easier for them to know from the start the maximum days a medicare patient will be approved for (100 days), private insurance is trickier.

Glad you did well transferring Monday, too. Tiring, yes, but looks like another victory is on it's way! (The hardest thing will be figuring out how to get your bottoms up and down) I'm sure this is all just the start of more victories for you. Just keep fighting, OK?

Oh yeah, I forgot to add some info about the sliding boards earlier. Your insurance will approve a "standard" sliding board. They come in 3 lengths (18", 24", & 30"). (There are many different kinds and prices, but that doesn't mean any of them will necessarily work any better for you. http://www.abledata.com/abledata.cfm...trail=22,14537)

For commode transfers, a longer board is not better. My guess is the therapists are teaching you with a 18" sliding board, that's length I was taught with and learned worked best. (Was taught how to make car transfers with a 24" board.) Just make sure the correct size is ordered. It'll take practice to learn how to do this by yourself, but here is information to help you remember what to do http://www.myshepherdconnection.org/.../sliding-board

And after you go home, you really should get a power wheelchair best suited for your needs. It will give you a new found freedom, which will definitely improve your QoL. If you do it properly, your insurance will cover the one you really need (not just one that you "think" you need). ,

Hope you have some more victories this week! Take care.

[RockysMom]

Rehab Blues

Hey Kimba22, I definitely want the exact sliding board that I've been using, it is shorter, has no holes, and has beveled ends. I tried a longer ones with holes and they were too long and the holes were catching my clothes and big butt 😮

But I never had a chance yet to mention the setback I had with the one female therapist (who is my case manager but who has only infrequently worked with me) who stresses me out. Monday she had me do 'scoot transfers' from wheelchair to this big mat table and back and she wouldn't let me use the 'push up bars' (they are bars normally used to do push ups and save your hands the trauma of pushing you up off the floor repeatedly) to aid in my transfers. She made me use just my hands and there's the problem. I was using these push up bars because I have an old injury in my left hand from 3 years ago when I slipped and used it to break my fall. Ever since then, my left hand was pretty much nonfunctional due to nerve damage and probably a fracture which was never treated since I had no insurance at the time.

Then when I came here, it started getting better by using hand grippers and with the first Tysabri infusion, it suddenly was much stronger overnight. But when I started working with this female PT, she must not have read the guy therapist's notes mentioning this old injury and that I was using the push up bars to spare my left hand trauma. Well she forced me to transfer without them and the old injury became like new. That was Monday so Tuesday I told her my hand needed a break and I was allowed to use the push up bars again.

Then yesterday, she wanted me to do stands and I balked since that would be more insult to my hand. She wanted me to try standing using the right hand and a helper holding my left elbow and arm. I started trying it, felt my elbow protesting as well as that hand getting spastic and I burst into tears and said loudly, "No! I'm not going to let you make me do something so nonsensical to me and hurt my left arm as bad as my left hand is now hurt again when it had gotten all better because you forced me to do transfers without the push up bars when I was using them to spare that hand! Now it's injured again and I'm sorry to say it's YOUR fault! I begged you to let me use the push up bars!" And I said I had no qualms about calling my insurance company and telling them I had a setback due to an old injury due to no fault of my own (not that I would point fingers).

She looked very stone-faced and tried to argue with me a bit and I just said I know if something is going to injure me and will tell her. But as a result, today, I had therapy in the afternoon so I'm not sleep deprived (she always insisted on early morning therapy whether I'd slept or not) and I worked again with the original guys and I told the PT manager I can only do afternoon therapy and hopefully that will be what I get. And hopefully I will get the 'continuity of care' I had been told when I first got here was so important and now I know why.

I'm sorry to have yelled at this lady who has been doing this for almost 40 years but it IS her fault and she was just not hearing me, assuming I was making stuff up to get out of doing things which ticks me off. I have said over and over if doing these things was a matter of willpower, I would have only been here a week.

Anyway, I hope the next infusion will again have a wondrous effect on my left hand as well as on certain muscle groups. Then I can go home. I hope I do get to work with the two original therapists who know me well now and how I need to approach these tasks. I hope because I don't need some pushy, high pressure woman trying to make me feel bad for not koataowing to her pressure tactics and acting like cheerleading is all I need when what I need is an analytical, methodical approach. Dammit!

[Kimba22]

Hi RockysMom,

I'm glad you've found a sliding board you like. But, so sorry to hear about the setback with your hand.

I do know about push up bars, and they sound like a great idea to help save your hand. They also provide more 'oomph' that can help you get up from a seated position. Sorry to hear the female PT didn't want you to use them and that's how you hurt your hand. Maybe she just thought it was time for you to move on the next level, not realizing the real reason you were using them.

Many therapists in these settings don't really take the time to thoughly read someone elses notes, so unless they are told, don't necessarily know/ or remember everything that is going on. And even if a small detail is written somewhere, that didn't mean someone would read it. I learned some of this my last go around. There was a PT who would usually see when my regular PT was off. She would always get frustrated because there weren't many detailed notes written about me.

On the up side of all those notes, another therapist could easily familiarize themself with me. But on the downside, this particular therapist spent way too much reading and writing notes during our sessions (when all that she needed to do was ask me.) I know many of the older patients could have cared less if they missed therapy minutes waiting for the PT who busied herself reading/ taking notes , but it frustrated me. I just be never felt like she was giving me her undivided attention during our sessions.

It wasn't until later that my regular OT & PT started sharing something about their heavy caseloads. Then I understood why they didn't/ couldn't spend a lot of time on their notes (they also mentioned that they weren't required to take detailed daily notes in that setting) And, with only so much time, they could either spend each session working on their progress notes or working with me on therapy. Since I could verbalize whatever it was we'd been working on (or not) I preferred they spent their time working with me.

It also seemed some just weren't that great at working with the younger population. There were a few with egos that should've been checked at the door, but overall, I'd eventually get paired with a therapist who worked well with me. I get that they need to challenge us so we can progress, but listening to our concerns is just as important. I'm just sorry, that for whatever reason, the female therapist wasn't aware of (or recognized) your hand injury.

Don't think I'd want my PT to also be my case manager. Wherever I've been, there was only one case manager for all the patients, and that's was their only role.

I developed a peripheral nerve injury the last time I was at a sub-acute rehab facility. I wouldn't say it was any therapists' fault it happened. I was just putting way too much pressure on one hand while trying to walk with my walker. But, what I didn't like was when the therapist still wanted me to put pressure on it to stand up, and to keep walking, even though I had no real control of that hand and it hurt.

No one seemed that concerned about it either, so it was my husband who took it upon himself to take me to the ER the next day (this happened over the weekend). I was admitted to the hospital, put through through more tests, and was finally given a wrist brace after I was properly diagnosed. It was only because the wrist brace stabilized my hand that I could continue with therapy.

I hope your therapy sessions have been changed to afternoons, like you requested, and you work with the therapists you like. For some reason ( that no one had a good answer for) the last place I was at changed up our therapy times almost daily. That made it hard on me, especially in the morning when I needed help by one of the aides to get ready. Took awhile to finally get a consistent PT or OT, too.

My PT finally put me as her first patient everyday, so at least I always knew when that would be. Then for OT, I was finally given a time range, but it could still vary by a couple of hours. Never understood why I wasn't assigned a specific time slot every day(or therapists from the get go, since that's how it was with the other places. Especially because they were all the part of the same organization) .

Is there anyone who can be an advocate for you? Sometimes, that was the only way changes were finally made for me. More than once I tried to navigate through the chain of command, but then it wasn't until someone else got involved that certain things changed. Sad that it had to be that way (especially for a patient competent enough to understand what was going on), but there were a few times that was the only way anything happened.

All things considered, it was only because of those facilities that I was able to find my way back home again. Just wish it could've been without needing to deal with all the bureaucracy while I was there.

Hoping you have a better week this week. Hope all went well with your infusion, too.

Best wishes