Barbara, Your experience and mine were similar. Only difference, I was very fortunate through my work to have about the best insurance available. After five days in the hospital, I was transferred to a rehab facility connected to the hospital I was in. It held about 25 beds and was run by a neurological physician who met with potential patients while they were still at the hospital, evaluated them to decide if they were good candidates for his facility and rehab program, and made daily rounds to each patient checking on their progress and adjusting their program accordingly. The staff was comprised of five or six physical therapists and two occupational therapists who rotated among the patients. The nursing staff were, for the most part, very capably trained to work with patients whose needs were all similar. I learned the majority of them were part of a program where they traveled to a different facility in the U.S. about every four to six weeks. I only remember one nurse whose care was not as good as the rest (but I guess someone always has to be at the bottom). I remained there for one month in intensive physical and occupational therapy re-learning to walk and care for my personal needs. I was given a weekly schedule of my therapy times so I knew exactly when and what to expect. I have to say, I was pleasantly surprised at the quality of the food served too! I actually ate better there than I did at home before getting TM. And the cleaning staff were always friendly and considerate. After my month was completed, I was sent home to receive a month's worth of twice-a-week at-home therapy. This was not begun until a therapist came to my home to evaluate it and make recommendations for my continued recuperation. Actually, because I live in a two-story house and it was decided I couldn't spend days at home by myself at that time (my husband had to work and my two teen-age children had school), so my mother volunteered to pick me up each weekday morning and take me to her house for the day. The evaluating therapist also came to my mother's and checked out her home. The visiting therapist's then came to Mom's house to work with me and I went home every afternoon once someone was there. When the month was through, I began a two-year process of in-office twice-a-week physical therapy. This included pool-therapy, recumbent bike and floor exercises to help my balance. I also was fitted with various hand/wrist splints to help strengthen my fingers and hands - TM left me with a "clawed" left hand and "dropped" fingers on the right. After the first year with TM, I attempted to return to work on a part-time trial basis. I quickly realized I'd never be able to participate in the normal work world again. I "retired" on permanent disability and, already being 50, began my journey in the Medicare and Social Security world. Unfortunately, Medicare is nowhere near as good as the insurance I had prior (which paid for nearly everything!). I thank GOD I had good insurance when it mattered most and it lasted through that first tough two years! I feel bad for everyone who has had to endure anything less. It's a hard enough experience to go through without the mind boggling pitfalls of medical insurance and Social Security. I'm sure many of you think it's easy for someone like me, who's had probably the best experience possible under the circumstances, to tell others to keep a good attitude and "look on the bright side." But I know the dark side of TM too, especially the pain and depression - I'm not immune to that. And I am not without my share of disappointments... you see, TM was my second "lottery" win... I developed scoliosis when I was 12, wore a Milwaukee brace for two and a half years and underwent spinal surgery at 19 to fuse nine vertebrae together. Since then I have lived with the physical deformity of a curved spine (which does absolutely nothing for a girl's self-confidence when trying on swim suits!). I do, however, so appreciate my good fortune in living in a city where the neurologist in the hospital ER was already familiar with TM, that a qualified physician ran such a wonderfully staffed rehab facility, that I received such great therapy during those important first two to three years and that my family have been so supportive and understanding. I recently purchased a little book of sayings that contained a few lines that really made an impression on me and my situation and I'd like to share with all of you... Attitude is the master key to life’s little locks. Most folks are about as happy as they make up their minds to be. – Abraham Lincoln Do not let what you cannot do interfere with what you can do. – Coach John Wooden I pray everyone who's had a rough go of it gets the break in life they deserve... none of us deserves TM, but to continually run into obstacles just to make it through each day is deplorable. Don't you know, if the high and mighty lawmakers and government honchos had to live with TM (or any of the really serious diseases or illnesses) with the pittance of Social Security and ridiculous Medicare rules we are forced to live within, you can bet things would change in a heartbeat! At least we have found each other and the support we need! There is encouragement and empowerment in numbers. Take strength from each other and we'll all get through this together! Betty (in Northern California)
In a message dated 1/6/2011 5:27:07 A.M. Pacific Standard Time, [email protected] writes: It sounds like I had a different experience from the rest of you with rehab. After my initial 8-day stay in the hospital while they ran tests and diagnosed TM, my neurologist wanted me to go into a 10-day stay in the rehab unit of the hospital. My insurance wouldn't cover that. I couldn't drive myself to outpatient rehab and my husband had to go back to work, so I had no transportation or help to get there, so they paid for a physical therapist to come to my home 2 or 3 times a week for about three months. It seems to me like that would have cost them more, but I don't know -- probably not as hospital stays are expensive. The girl who came was sweet -- she didn't mind if my kids came in and watched or tried to do the same exercises. She was short and petite and I am tall and...not petite...and I did wonder if she could handle it if I fell. Thankfully we didn't have to find out. She was great -- answered questions and gave me specific exercises for my concerns. I liked being at home because I didn't want to be in the hospital away from the family, and because I felt my adjustments could be tailored to the obstacles I would face in my own home rather than just general instruction in the hospital. I did wonder occasionally if I missed something by not being in rehab at the hospital, but it was out of my hands anyway. My only quibble was that it only lasted until I was able to walk in a stable fashion with a walker. I was thrilled with that, but felt I could have used some more fine-tuning. It never occurred to us at the time that we could try to push for that with the insurance company. But I do believe that physical therapy was the best thing for my recovery, next to prayer and God's grace. Barbara H. _http://barbarah.wordpress.com_ (http://barbarah.wordpress.com/)
