overwelmed, lost, scared.

[Lisakaymd]

So, I had a spinal stroke the beginning of sept. I can't move or feel anything other than tingling and tightness below the waist.
I feel so overwhelmed, lost and scared. I'm not married so I've been relying on my dad and brother, but I feel like such a burden. Any therapy I've gotten has been minimal. At first because I was so swollen with fluid that I literally couldn't sit up. The other obstacle being insurance.. How the heck do they expect someone to get better with only 45 days of therapy.

I now have pressure wounds on both outer ankles that go to the bone. they have wound vacs on them and are slooooowly getting better. On long term antibiotics until the end of this month.

How do people that eventually walk again get the therapy they need?

Losing one's independence is so life changing. I cant imagine relying on both my dad and brother for the rest of my life, but don't know what to do. I used to go to the gym, work a lot of OT, just go out and about.... now I can't even roll over in bed without help.

I do have an appointment with a Dr. at Physical Medicine and Rehab feb 2. I'm hoping something good comes of that.

[Rustyjames]

Hi Lisa,

Sorry you had to wind up here. It is overwhelming, and the only advice that I can offer is to take it one day at a time. Also, try contacting the Health and Human Services Administration in your state to see what kind of resources that might be available to help you work through this.

[2drwhofans]

Hopefully you have new plan year insurance benefits for 2017 to cover outpatient therapy.
Where did you get your inpatient rehabilitation? The SCI Rehabilitation doctors are more likely going to be in Baltimore and Washington D.C.
Maybe the person listed on this support group in Baltimore can point you in the right direction of resources in and near your county-
http://www.spinalcord.org/spinal-net...support-group/

[pfcs49]

The worst time is the beginning. Trust me, it WILL get better.

Put on your seat belt and hang on, you're in for a hell of a ride that will get smoother as you move along.

This site is a great resource for all things spinal. Help is on the way! (but sometimes you have to ask)

[funklab]

We all know how bad it sucks. You certainly can't learn everything in rehab, even if you had longer than 45 days (which is what most of us got if we were injured in the last 10 or 15 years), but that's what's great about this site. We've all been there. I learned a lot in rehab, but I learned even more once I was back home and doing it. If you're having any specific problems, let people know. Someone on here has been through it before you and at least has some friendly advice, and the SCInurses are all pretty amazing human beings who know all of the ins and outs of the system as well as the disease.

I used to go to the gym, work a lot of OT, just go out and about.... now I can't even roll over in bed without help.

And btw, it might not seem like it now, but if you have the use of your arms (which I assume from your post) you can certainly do all of the above whether or not you are ever able to walk again.

[hlh]

You do as much rehab as possible. Forever.

It it is still very early after your injury. Don't give up. Treat your depression aggressively. And take it one day at a time.

It's great to stay inpatient as long as possible, at the best place you can. But it is never enough. Then do intensive day rehab for as long as you can. Then do outpatient PT as long as possible. Then every year, you go back for more PT for a tune up. You do home exercise programs, go to your local YMCA/gym or make your own home work-out space. You get in a pool. You look for clinical trials at your local rehab hospitals. You find a Lokomat. You find a personal trainer to help kick you in the butt.

And you get your wounds healed. Protein protein protein. Stay well hydrated. Vitamins. Get a second opinion from the best wound care doctor/nurses you can find. And as soon as you are cleared, restart intensive PT and OT as an outpatient. Ask if there if there is a day rehab program.

But today... Use those hand weights and bands and stretch well every day. Call your doctor tomorrow and ask for a script for home PT and OT until you are more mobile. Fight for everything you need.

[graybeard]

The first year is the roughest. It does get better, and I hope you can recover as much function as is possible!

[bigtop1]

Here, you are never alone. Reach out when you need to. Be strong. Never give in, never give up. As bad as you may feel, there are others with as much or more problems than yours. Recognizing and correcting feelings of despair is important for you. Yeah, another medication to have to take but, it may do you good. Feel free to ask questions any time, someone most likely will have an answer.

[pfcs49]

If you're confined to bed, DEFINITELY get some 2-5lb hand barbells and work your ass off with them!

They say that for every day in bed it takes a week to regain what's lost. When I spent 3 1/2mos. that way healing a pressure wound I had one opportunity to sit up in my chair after a month. I tried doing a pushup in my seat and couldn't even begin to lift myself. That made it abundantly clear what I needed to do (and I'm lazy) which was to work on my arms and shoulders while in the bed, which I did, or I would be useless when healed.
The exercise worked very well and when they allowed me out of bed for the first time in months, I was able to do the somewhat difficult transfer out of the Clinitron Bed pretty well, first go. And what gratitude I felt to be able to move again, to look in my aquarium, to explore my old home for 15 minutes before it was bed-time again. But over time that became hours, then all day.

If you're going to be compromised like this (i.e.: paralyzed, bedridden) for any length of time it is incumbent on you to be your own best advocate. Get that high protein diet even after healing. exercise yourself even in bed. Life may never be the same, but there are great rewards to be had and impediments to conquer!
After 8 years in the chair (T12) I realized I still had the desire to go road racing so I designed and a built (mostly by myself) new hand controlled 88 VW GTI which I raced for 3 years very successfully until writing it off at Road Atlanta. Maybe I'm bragging, but that's OK. There's still stuff to do that will be brag-worthy, you just gotta keep the faith and be willing to show up for yourself. (I heard something like that with faith you can move mountains, but bring a shovel!)

[Jim]

So, I had a spinal stroke the beginning of sept. I can't move or feel anything other than tingling and tightness below the waist.
I feel so overwhelmed, lost and scared. I'm not married so I've been relying on my dad and brother, but I feel like such a burden. Any therapy I've gotten has been minimal. At first because I was so swollen with fluid that I literally couldn't sit up. The other obstacle being insurance.. How the heck do they expect someone to get better with only 45 days of therapy.

I now have pressure wounds on both outer ankles that go to the bone. they have wound vacs on them and are slooooowly getting better. On long term antibiotics until the end of this month.

How do people that eventually walk again get the therapy they need?

Losing one's independence is so life changing. I cant imagine relying on both my dad and brother for the rest of my life, but don't know what to do. I used to go to the gym, work a lot of OT, just go out and about.... now I can't even roll over in bed without help.

I do have an appointment with a Dr. at Physical Medicine and Rehab feb 2. I'm hoping something good comes of that.

Were you in the hospital when you developed these pressure sores?

[Lisakaymd]

thanks everyone. Yes I was in the hospital when the wounds developed. I don't know exactly when since I can really see that part of my ankle and can't feel anything. Doesn't help that my skin is super sensitive. I've got wound vacs on them now. I'm at a hospital now getting IV antibiotics since it turned out I have an infection in the bone. The wounds are looking sooooo much better since I've been here.
I'll be d/c'd from here on the 31st, then I have an appointment with a Dr at Physical Medicine and Rehabilitation through John's Hopkins. My PCP referred me there - says he sends his toughest patients there. The Dr I'm seeing just happens to be the medical director of inpatient therapy. I dunno, we're hoping for something good to come of that appointment.

As far as my lower half - I can't feel if something it touched or leg lifted. etc. However I do have quite a bit of tingling. It's never the same. A couple of weeks ago I felt really sharp pin prick in my big toe. My home nurse happened to be there and pressed where I felt it and it definitely felt more so of a pin prick. Haven't felt that again. With in the last two weeks it's starting to feel like I have compression stockings on. Still having tingling. While I was sitting on the side of the bed today I could feel the pressure against my feet. This week I've started feeling the urge to fart/poop, just can't do anything about it. I can push a little but not constrict the rectum. (sorry if this is TMI).

Kind of ironic... on my foot I have a tattoo that says "letting go of who I am to become what I might be" I got it about 5yrs ago when I was working on some goals (have lost 130 lbs or so} but now seems like a whole different outlook to that quote.

[StephenD]

I've been there too. . . What follows are my thoughts. . . If you find them useful, I'm glad. . If you don't just ignore them. . .

One of the things that really helped me was to let myself get angry and frustrated. A lot of the advice I got was that I needed to accept my situation and move on. To be honest, that sort of advice always rang hollow to me. Why? Because, in point and fact, I had a pretty deep well of anger about my situation. To that end, I let the anger and frustration fuel me.

Here's an analogy: imagine yourself on the side of the road, at the end of a long day, in the middle of a rainstorm, and you just got a flat tire. For some personality types, that's the point where you just have the "phuck it" moment and just get it done so you can go home.

Right now, you're on the side of the road, all four of your tires are flat, you're running low on gas, the rain just turned to sleet, and your cell phone just died. You can't change any of those facts, but you can control the way you react to them. It's time to focus on what you can do. Go on youtube and see how different people handle the sorts of tasks you're struggling with. Ask around on here for tips and tricks. Most importantly, take care of yourself.

None of this is meant to diminish the sadness you're feeling. Just like you have a right to let yourself be pissed, you have a right to mourn the loss of what you once had. How you balance the two, is something that you need to figure out. . .

--peace

[2drwhofans]

I wish you the best and hope you get a goal directed plan of care from the rehabilitation doctors at Johns Hopkins.

Re: "Yes I was in the hospital when the wounds developed. I don't know exactly when since I can really see that part of my ankle and can't feel anything. Doesn't help that my skin is super sensitive. I've got wound vacs on them now. I'm at a hospital now getting IV antibiotics since it turned out I have an infection in the bone."

This is what's called a "Never Event" for hospitals. Stage 3 and 4 pressure sores that develop while a patient is in the hospital have to be reported to the insurance company and there is usually a standards review done within the hospital itself. It's an unacceptable outcome, often due to negligence. Sort of like operating on the wrong leg.

I know you have a lot on your plate right now but please consider consulting with a Maryland attorney who specializes in medical malpractice. Have someone take pictures.

Sorry for sounding mercenary, but living with SCI can be expensive.

[JakeHalsted]

The first thing to do when you're on an antibiotic....is get a good pro biotic supplement. The ONLY thing that worked for me in recent life...is "Align" an over the counter probiotic. But I think that different things work for different people.