Losing optimism

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I am in that situation trying to get Medicare to provide the Physical Therapy that I need. My spinal cord injury's effects have been gradual, as the damage was caused by radiation. Last October it was finally diagnosed and successfully treated. But...over the past year, I have become paraplegic, but my doctor says with proper therapy (intensive and on-going) I could walk. Now she is saying I should still be able to stand to transfer from bed to wheelchair, etc. But getting the wheels moving to get into inpatient rehab is very tough. The other option: Pay $175 per session for a PT to come to my house (not possible w/o tearing through our modest retirement funds, or go into a nursing home that provide physical therapy. I've about lost the optimism I kept hold of for the past 9 months. Feeling very depressed and that being paraplegic and totally dependent is going to be my future, when with proper care, I could maintain a bit more independence. If anyone has comments or knowledge on this topic, I would very much like to hear from them.

Meanwhile, I am consulting a urogynecologist today. I cath 2x per day. Hoping I don't have to do more than that to keep my kidneys safe. I kept a pee chart and am taking a sample of urine to the appointment. Trying to anticipate what she will ask for so I don't have to make unnecessary trips to the office or try to pee for a urine sample in a wheelchair. Do doctors realize how difficult that is for us?

This constant care/worry/arranging is getting me down. It never seems to stop

 

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Hey Etowah,
I’m really sorry to hear you are going through this. I can relate, as due to a drunk surgeon I went from a career in Global Finance traveling to my offices around the world & 30+ years of martial arts and kickboxing 2x a week to a wheelchair overnight. This was 13 years ago and I went through a period of being stunned, angry, depressed etc., but I figured out I had to get my life back in whatever form that was to be. 2 years post-op I finally walked out of physical therapy under my own power.
I raised hell, called Medicare & my doctors daily until I finally got into a program that pushed me to my limits daily, but the harder I worked the better I felt physically & mentally. A lot of these hospitals are beginning to stick rigidly to the 15 minute appointments allowed by Medicare, so you need to find an advocate within the system that will stand up for you. Be relentless, please don’t give up! DM me if I can help, only you can make this happen! We’re all here for you!

 

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I hope you have someone to be your advocate to stand beside you and continue to help you make the day to day and long term choices that YOU want to live by.
Do not think anyone but you has the right to decide what is the best lifestyle for you in this difficult body situation.

When swimming, if one gets tired you float a bit. You don't beat yourself up for not pushing against the tide.
Give yourself credit for swimming this far and you will continue to have the strength to reach for help.

 

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@Etowah My father and grandmother recovered at a nursery home where they were really pushed to do PT. If you don’t do the PT, you have to leave. I highly recommend spending some time in such a facility to better help you recover.

 

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This is helpful, friends! My son is talking to a disability lawyer today to see if she can help and be an advocate. And I need someone to go with me to visit nursing homes that provide good PT. Interstingly, it was the nursing assistant who helped me bathe (in bed, of course) who suggested this. I found out a few mintues ago that I was turned down for inpatient rehab--I chiefly need intensive physical therapy and not speech or feeding therapy. I asked my doc's assistant to gve them a call back and emphasize that they wanted me to have OT, too, in the hopes it would get me in. The system is so broken.. It's going to cost Medicare more if I don't get back on my feet.Would love to know what program you got into Sprung87. It sounds like what I need. Thanks, all for your advice.

 

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One of the ways that they helped me to get in was to state I needed dietary & nutritional therapy, as from sitting still for months on end and eating poorly which I seldom did as I love cooking, I gained about 30 lbs. of fat & developed type 2 diabetes @ 7.4. Truth is I was able to bring it back to 3.5 simply through exercise & eating better, but that was what I called my “Pity Period”!
They also said I needed occupational therapy, learning how to access simple things out of my reach etc. They were able to put together a pretty full schedule including the PT 2x daily added to the fact I lived 3 hours away to convince the “Powers that Be” I needed in patient care, just so all of the Drs & therapists had access to me 24/7. Later they were able to put me up at a hotel adjoining the hospital to save Medicare money while keeping me 5 minutes away as needed. My PCP was Brave as HECK! Going against the grain, as I cost some Drs their “$BONUS$$$$” for spending over the average $$ allocated per patient determined by some “Sub-Humans” that determine the normal budget per patient, and have obviously never been sick, YET!
FIGHT,FIGHT, FIGHT! I heard NO! 100 times for every yes, but I mountain bike & hike with my “Rescue Husky” every day now often twice a day.
My most recent Lumbar MRI again confirmed I cannot walk! They even apologized that someone had mistakenly taken my wheelchair! Yet thanks to some really GREAT people I do it everyday!
The only thing I can’t do is dance, but I never could before this so some things you just have to accept, but nothing less!

 

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This is my best

physical therapist ever! He brings me his leash 2x per day at least!! Doesn’t care about my mood, my pain level, my leaking bladder Blue has a job to do and it’s ME! I can’t even fire him let alone give him a day off!

 

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Etowah: Depression is common among us; you can get help with that, and self-help. One of the systems ought to work for you - try the library. Some libraries have "home service", or get books cheap at on-line, or even from salvation army stores or something.
Medicare has a limit to number of days in a nursing home - or maybe it's number of dollars or both. Been there. My private insurance picked up the portion Medicare didn't - and extended the time. It sounds like all you have is Medicare.
If you are a vet, groups like the VFW and DAV have advocates, and there are probably others. Medicare has this thing: always deny the first time. They gotten in legal trouble for that and lost in court, but they try to pull that, anyway. Keep appealing.
One thing might help. Get a few sessions with a PT, even if you have to pay. Tellthem due to finances, you can't do many sessions and would like help with lessons you can do at home, yourself. They often have illustrations of different exercises. See if you can get the physical aids - like grippers for getting things too high or on floor. There are aids for putting on things like socks.

 

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It is my understanding that Medicare pays for so many days in a rehab facility/nursing home. Have your doctor write the script. Call Medicare yourself for some guidance. If you have a secondary insurance which most of us do, call the nurse there and ask for some guidance/information. They are there to help you. Blessings and prayers. I hope you have not used up all your time they allow already. blessings and prayers I am depressed right now myself rehabbing from my shoulder surgery. It is hard, I know, I get tired of all this crap myself. I need to get back my get up and go.

 

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Just an FYI one of my recent therapists told me, if they take the time to find the proper codes you can qualify for far more therapy on your spine than most therapists are familiar with, the spine ranks on top of most body parts. It took almost a year just to get feeling in my arm back after the tumor was removed from my C-Spine. She even told me that due to my prolonged and litigious fight for proper treatment (3 years), a Medicare expert was called in to locate the appropriate codes, or “Insert Major Hospital” would have to pay for 3x per week @ $840.00 per visit!

 

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I agree 100% with Sprung87. you need to fight. It hard believe me I know.