PT Not Lookink Good for Me!

[SalpalSally]

I may be stuck in this dam bed more than I want to be. PT is not consistent here
and I'm not doing so well. Poop, not happy camper right now. Oh well I'm here
for a reason. The show seems to be over for me..darn it!

I've had to adjust to a lot of changes in the last 50 yrs n this is the toughest.
I'm okay, just hate it that's all.

[Parsi]

Sorry to hear the PT is not working.

[agate]

I may be stuck in this dam bed more than I want to be. PT is not consistent here
and I'm not doing so well. Poop, not happy camper right now. Oh well I'm here
for a reason. The show seems to be over for me..darn it!

I've had to adjust to a lot of changes in the last 50 yrs n this is the toughest.
I'm okay, just hate it that's all.

Guess I don't understand. Are you saying you won't be able to get out of bed for quite a while yet? Or that you're stuck in that place and not going home as soon as you expected? I'm sorry if I've missed some details here.

PT isn't consistent? They don't do the PT as often as they're supposed to be? That could be a real problem, seems to me. Is there anyone you could mention this to--maybe with an emphasis on your MS of long-standing, etc.?

I'm so sorry about this. PT seems to be really important for anyone who has lost mobility.

[SalpalSally]

I'm never coming home. Am in retirement/Nursing home.
And Medicare only pays for so much PT.
just want to get up in wheel chair and tool around
when I'm able, LOL,

[Jeanie Z]

:) ((((Sally)))). Does the nursing home have a social worker? The SW should be able to get your PT extended and more frequent. Or maybe Ohio has a senior ombudsman. Or try calling your state representative. You can give them my name and info if you need support.

Can you do any of the PT you had by yourself to keep the muscles ready. I do some isometric exercises in bed and in my chair. I think they help. Will your daughter or another relative or friend come and help you exercise.

Don't give up without a fight. I will send you my phone number in a PM. Stay strong. Love, Jeanie :)

[agate]

Sally, I hope it isn't true that you're never going home. I've known lots of people who are in and out of nursing homes--in for months maybe but eventually return home.

Unless you've already given up your home base, I don't see why you can't look forward to being independent enough to go back there. Even if you no longer have your own place, arrangements could be made to find you one. I've seen that happen too.

There's a woman in this building who's been here at least 6 years. She came from a nursing home where she'd spent a couple of years. She rides around on a gurney and has helpers but she manages. Maybe that isn't the type of situation you want, though, and I understand that.

As for the PT, could the local chapter of the MS Society be of any help? Some chapters have funds to help people with MS in time of need. Seems to me you could apply for a grant to cover the PT that Medicare isn't letting you have.

Or does Medicare allow an "exception to policy"? I know Medicaid does. A doctor has to write up a statement of need and the Medicaid system has to OK it but it's one way to get something you're being denied by their system.

[Howie]

I was also about to recommend Medicaid. I couldn't get by without it. I worked and paid into it my whole life, and SS, never thinking I would need help this soon in my life, but now I do. Don't give up hope Sally.

[SalpalSally]

As soon as my personal monies are gone, I will go on Medicaid.
Still spending my own money. Medicare only helps with some PT
n that is it. Grrrrrrrrr. I have to wait till I'm broke, before Medicaid
kicks in. I can pay out of pocket for more PT @ 300.00 per day!!!!"

This getting old stuff is not for sissies n I am one...Lol,

[agate]

As soon as my personal monies are gone, I will go on Medicaid.
Still spending my own money. Medicare only helps with some PT
n that is it. Grrrrrrrrr. I have to wait till I'm broke, before Medicaid
kicks in. I can pay out of pocket for more PT @ 300.00 per day!!!!"

This getting old stuff is not for sissies n I am one...Lol,

That's where I think that a grant from the MS Society or one of the other MS organizations (MSAA, MS Foundation, etc.) might be very nice to have. You might have to prove financial need but on the other hand they might recognize your situation--not poor enough for Medicaid yet and yet not rich enough to afford the very much needed PT. It wouldn't hurt to ask if you're up to making some calls, or maybe someone can call for you?

[Howie]

I HAD money when both parents passed away. But I spent it before long so I would qualify for Medicaid. Just the cost of meds was eating me up. So I put money into Pinky, had a garage built, washer and dryer, and siding put on this place. Oh, and the PT Cruiser, my first and last new car. Things I would need to stay independent as long as I can.

My doctor at the time helped me with the SS, and I went and applied for Medicaid myself, and jumped through all the hoops. Help of all kinds is available, you have to look for it, and keep pushing for it.

[Virginia]

Sally, there must be a way to get PT. That is just necessary. However, I am not sure how good they are as far as what they are doing for you when they give you the PT. Some places just have very good Physical Therapy Departments and then there are some that are so lax that it is hardly worth it.

I have witnessed both kinds of PT. The kind that really does some good and the kind that really does not make much difference if you get it or not. Only you know which category your place is in as far as the quality is concerned.

However, you need to keep trying and the only way is to keep getting the Physical Therapy. It is so hard to accept that there is not some agency that will not step in and help. If they understand that this is the problem that is keeping you out of your home and keeping you from living independently, it just makes no sense.

You must try. Start with the avenues that Agate mentioned. Cat is good at this, so is Rose and also Cherie usually has some information.

[Lazarus]

Hi,
You have gotten great information from Agate and others on this board. Is there someone who can advocate for you? The suggestion to call the MS society is a good idea. They should steer you in the right directions. Please do that.

Linda

[Sunshine]

Well, this totally stinks. Your kids are going to have to help you out. Do they know?

In the meantime, take Jeannie up on her offer. You can start moving on your own, little by little. You're very smart and inventive. Find ways to keep moving the muscles on the parts of your body you can still move. You'd be surprise how well this can work. Put up a fight! Don't give up, we are in your corner on this! Keep moving even if you cannot get out of bed.

[Cherie]

Sally, your words "the show seems to be over for me", cut to the quick. I am sure you felt like that when you wrote them but there are lots of creative therapists out there (I've actually found a couple!) who will keep working and thinking till they have solved a problem for you. keep looking and asking.

[agate]

I must be lucky because all of the PT experiences I've had have been very positive and helpful. The PTs do stress that you have to keep up with the exercises at home on your own after you're finished with the PT. I try to do that.

Some exercises can only be done with the PT's help though. Maybe yours are like that, Sally?

I think it's a great idea for you to try in any way you can to keep those muscles moving. If they give you routines involving an exercise band or hand or ankle weights, could you do those on your own?

I must admit I find exercising very very boring and I often put it off till late in the day but I've learned the hard way that if I don't keep up with it, I'm in trouble.