Hello everyone! It's kind of weird not blogging every night, but with everything I have to do on my own now because I don't have 24 hour nursing and PCT staff here to help there just isn't as much down time. Living at home has been really great being able to see friends, family and people I haven't seen in years. A lot of things have been going on over the past week so I better just get started.
I'll dive in to this weeks blog starting off with the new OT and PT staff. I am using Thedacare at Home for my first physical, occupational and nursing needs in the Valley. Thedacare at Home seems to be a good organization that is linked with Theda Clark which will be my next step in rehab. Twice a week I have PT and OT visits here at the house. My PT Lynn is a really nice lady and has been working on stretching and e-stimming my legs each time she visits. Lynn has not worked with a spinal injury in thirty years but seems very willing to try to help me out. On our first visit together she made a real effort to call around and see if anyone else had more experience with spinal cords that could possibly help her shed a bit more light on my situation. Our main focus has truly been e-stimming and movements that are occurring in my left leg which has shown great improvement and probably one of my most exciting advances in the last week. First we e-stimmed my ankle movement pushing down which I now can freely do on my own with a decent amount of movement range. Next, we e-stimmed the muscle that controls pulling the ankle up and back towards my knee. Just this morning I realized that I can on command pull that muscle now which is really neat that as soon as you notice a movement on a muscle if you do a good e-stim session on it it most likely will then begin to move on my command.
I also have been working with OT whose main concern is working with my hands and making sure that different functions such as dressing, shower programs and bowel programs are under full control. First I had a temporary OT for the OT that was in my area was on vacation. We worked on a couple different sessions. She put together complete notes for the local area OT. I am now working with a lady named Shelly. She is really energetic and excited to work with me. Thedacare at Home works with elderly home bound people ninety percent of the time so when I work with Shelly I get the impression that she is excited to have an ingenious young man with lots of potential on her schedule. Just in our first session, I already was asking her to push her own comfort limits by learning to use e-stim and any other treatments that are available for spinal injuries. She mentioned a type of arm sleeve that was also electronic that you would wear and was going to look into it for me.
One of the main objectives with OT for me is definitely a pressing issue that has been giving me a lot of grief since I moved home. Lately, my hands have been giving me trouble because of the way my muscles are contracting and giving me a very closed fist hand position. Every morning when I wake up my hands are completely closed as if they are ready for a boxing match with Muhammad Ali. Throughout the night, I unconsciously close my fists and this action makes it so that when I wake up it takes a half hour to an hour of stretches and different finger extensors exercises to get my hands open. Because of this change going on in my hands I came up with the idea of talking to my doctor about getting a prescription for hand splints that I could wear every night to keep my fingers straight and extended while I am sleeping so that it isn't this constant battle I have been going through. Each night I wake up and I almost feel that I am stepping two steps backwards with my hand function. It is odd with as much trouble as I have been having with my hands lately, there have been different improvements in their function as well. My grip is probably close to twice as strong as it was three weeks ago. Also, there is an exercise that I do quite often to keep my fingers moving where I touch the tip of each finger to the thumb one finger at a time. This exercise has also become easier.
The next large discomfort that has occurred since I moved home has been terrible back pain that is happening from two different agitations. One, is the hospital bed that was provided by Walgreen's. This bed is adjustable but probably thirty years old. The mattress is warped and flexible as can be making you feel like you are stuck in a hot dog bun and the motors that bring the head and foot of the bed up and down are louder than a Mack truck. When I go to adjust the bed I literally wake up the neighbors and most certainly my roommate which I share a bedroom wall with. And secondly, is the back of my wheelchair. The new rental wheelchair that I got from National Seating and Mobility has a back on it that is giving me crazy lower back pain every day now. The combination of these two is creating quite a monster in my lower back. So, in order to try to eliminate this problem I have been getting a hold of the chair company so I can meet with my local distributor to have the chair modified and Kalli and I have been searching for a new bed. This leads me into one of the best things that has happened this week.
The other day Kalli and I went to VanVreedes and a couple sleep shops in the mall looking at tempur-pedic, sleep number and very nice latex and flexible mattresses that will work on an adjustable frame. These types of mattresses are the only kind that bend enough so that the adjustable frame can lift up your head and feet. Of course, the frame is expensive and so are these type of mattresses that work on it. But, Kalli and I came to the conclusion that my sleep is really one of the most important parts of my recovery. For me to be able to do therapy during the day I need to be well rested so that I can stay awake and focus on what I am doing, especially because I am in so much pain and needing to take a regular schedule of pain medicine which makes you sleepy as well. The combination of bad rest and pain killers is enough to put anybody in a 24 hour nap. So, after online searching and a full day of running around to different stores to lay on mattresses we had researched we decided to do one last test drive and then it was time to pull the trigger. We were on our way to VanVreedes to pull the trigger on a Donald Trump flexible mattress and adjustable frame when I said to Kalli before we walk in there lets call American and WG&R to make sure they don't have some cool deal going on right now where I could get a free TV as well since we are spending quite a bit of money on this bed. So, we realized as we pulled up to VanVreedes that WG&R is right next door. Kalli ran in to talk to the salesman there as I called American from the car to find out if there was anything special going on right now. No more than two minutes later Kalli came running back out of the store, excited for sure enough exactly what I had hoped for was the deal going on at WG&R. With the amount of money we needed to spend on our bed, we were going to be able to get a free 42 inch LCD, HDTV. Ecstatic, Kalli and I began transferring me out of the car into my chair to get inside to see what they all had available. WG&R has a HUGE inventory and great display of mattresses for us to choose from. The salesman that worked with us was truly a well informed mattress extraordinaire. He made us feel very comfortable and educated about our purchase. After an hour and a half of transferring onto half a dozen beds or more so I could lay and really try them out we made a decision on a particular latex cushion top bed that was really comfortable, the right height for transfers and queen size. Amazingly, they had both the power frame and the mattress we wanted in stock and could deliver it the very next day. Kalli and I drove home incredibly excited about our new purchase of a bed and the fact that WG&R was going to throw an awesome $600 tv on top of that.
Meanwhile, while we were shopping I had my cousin Bill and Mark working at the house getting rid of the horrible bed Walgreens had sent to try to slowly kill me. So, when we got home the room was cleared out and Kalli and I had to sleep down in the basement where Mark has a guest bed. So, the only ways to get down there are have two people slowly let me down the stairs, or, go outside and roll down the steep backyard and go in through the bottom basement door. Mark's basement walks out to the lake as well. I was convinced that Mark and Bill could fairly easily let me down stair by stair using the staircase. So, I convinced them to give it a try. This idea was one of my worst that I have had so far. Mark ended up being dragged stair by stair fighting for both his and my life. His staircase is not built to code by any means and has incredibly short treads so the wheelchair wheels were not able to stop on any of them. It just wanted to keep going down. Being around 200 pounds didn't help the situation at all, but we made it down with only one monster rug burn all over Mark's ankle. I, on the other hand, was just fine.
Along with new OT and PT's I also had to choose a new local primary physician to help me with drugs and any other needs that I would have. I had an appointment this week with Dr. Revolinski at Theda Clark. He turned out to be a really nice guy, young, patient, and very understanding. He seemed to be one of those doctors that really sits down and listens to what you feel are your needs so that he is able to help you the best he can. To me, that seems to be probably one of the best features you can have in your doctor because so much of your care is based on what you take into your own hands. A doctor is never going to know what is going on with you and how he can fix it if he doesn't listen to what your needs are. After sitting down and talking with him for a while we made several small changes to my prescription and I got him to write me a few prescriptions for my hand splints, a power bed for tax reasons, and a longer lasting pain med to trial. Before we left, we also got his signature for my disabled parking pass which we will be going to go get at the DMV today.
Before we left the hospital Kalli and I decided it would be smart to go look at the 6th floor so that we knew what to expect for my outpatient therapy that I will be starting at Theda Clark after I am done with homecare. The sixth floor is theda's brain and spinal therapy inpatient floor. Much to our surprise, the 6th floor was very similar to the 7th floor of RIC. They also had a workout gym with mats and several pieces of equipment that would be helpful when I am there. Everything was a little older looking but definitely still functional. We left the hospital feeling confident in our decision to use Theda Clark as our next step of therapy.
Every week a wonderful organization, called Lions Club, is open from 10-2 and 6-7 on Tuesdays. Yesterday I went there for the first time with a good family friend Larry Plia. Last time I saw Larry he had explained to me that he recently retired, had been following my recovery and was more than willing to help me any time with a ride or whatever I would need. Larry is a great guy and I have always enjoyed the little bit of a time I have spent with him over the years so I took him up on the offer. He is a close friend of my father's and lives only a mile or so away, basically just across the lake. So, Larry picked me up Tuesday morning around 10:30 so that him and I could investigate this highly spoke of Lions Club. The club is in a small unincorporated town called Larsen, just a few minutes out past Willie Beamons, west of Neenah. We pulled up to a pole shed with a big Lions Club sign on the side. A few old dodgers approached our car as we began transferring me out. Friendly as can be, they began asking us what we could use to help my situation. The Lions Club is a group of old, retired men that take in donated medical supplies and rehab equipment so that they can turn around and redistribute it to anyone that is in need. The equipment is free of charge and there for the taking. As I rolled around the large pole shed I felt like a kid in a candy shop. They had so much great stuff that was exactly what I was looking for. I had a handful of different items on my wishlist that I was hoping they would have. Virtually, every single thing I was looking for was there and they were more than willing to let it go. Basically, they put a number on all of the items you take and record simply that you have them. They ask that if there comes a point that you no longer need them that you just return them so that someone else could benefit as you did. But, if it is something that you will continue to need it is yours forever. What an amazing organization. There is so much equipment that people receive which is paid for by insurance, they use it, get better, and don't have a clue what to do with it after that. Here is the list of all the wonderful things that I was able to find in this handi-cap play land: adjustable bedside table on wheels, shower wheelchair, space heater, portable aluminum ramp, trapeze set-up for leg exercises, small support cushion for my back, power lift for transferring into a boat which will swing out off the dock, exercise back wedge, toilet seat extension. All of this equipment would literally be thousands of dollars and I can't wait to put it all in use. Especially, the power lift so that I will be able to use my ski boat once I get it back from CA, which by the way is a HUGE need that I have right now. So, I am going to just throw it out there to see if anyone would be willing to help me out - I will pay for a plane flight from either here to CA, or CA to here and rent the vehicle to tow the boat back. I have a twenty foot ski boat that I would like to be able to have while I am home because it is one of my favorite things to do and is something that I still can do since power boats are set up for a quadriplegic. There are no foot controls, the steering and throttle are both done with your hands.
I mentioned on my last blog that food was always appreciated. Several people came through with some wonderful dishes. I just wanted to say thank you, thank you! With everything that is going on, therapists coming and going it has been so nice to have good meals in the fridge that are easily heated and enjoyed.
Another important part of my therapy is to exercise and continue building muscle strength. Mark and I have taken a section of the garage and dedicated it to this cause. My cousin Bill and his business partner Brett have donated a piece of equipment from their anytime fitness in Plymouth to get us started. Bill, Brett - thank you so much. I can't wait to have the garage all put together and start working out in there. If anyone else has useful equipment that they are not using right now I would love to add to our Lakeshore Gym here in Mark's garage. Things that I could use are: peck deck, curl bar with weights, pedal bike that I could convert into something where I use my arms to pump my legs. And, anything else that people feel would be useful.
In response to my vehicle needs: Getting a van is definitely at the top of my list in order to achieve true freedom. I will be searching for the next several months for a vehicle that would work for me to modify or that is already converted. I believe the best way would be to either have a quick lift that puts me into the back of the van or a ramp that is easily flipped down where I can wheel in, then have the drivers seat removed so that I can simply wheel into the driver's position, lock down and drive away. The vehicle would then need to be converted with hand controls for driving as well. Any help or information that people would have on vehicles that are available would be wonderful! The time it takes to break down the wheelchair and load it into the car is what I am wanting to avoid. With this style of vehicle this way I can just roll right up into it and drive away. With as long as it takes to break down the wheelchair and transfer in and out, it becomes so common for me to take the easy way and just say why don't you just run in I will just wait in the car. I really hate that concept which is one of the main reasons why I want to be able to just quickly roll in and out of the car.
THE GIG: 1132 East Wright Street, Milwaukee, WI 53212
*Noon to 5pm
*LIVE MUSIC: Nick from Delta Routine, a local band, will be playing along with possibly a few other great bands.
*I WILL BE THERE! My good friends Ski and Nolen are helping put on this event and I can't wait to be there. I think it will be a really good time and a great way to see all of my close friends from Milwaukee. I hope you can all make it! It should be a lot of fun. Ski will be selling raffle tickets throughout the event for he has collected tons of prizes from local businesses that will all be given away through the raffle. If anyone else has something to add or that they want put into the raffle please contact Ski at 262-442-8049 or Nolen at 920-379-0214. Or, get a hold of me and I can help coordinate as well at firstname.lastname@example.org
My family is also planning another benefit on September 11th at the WAVE in Appleton. A benefit meeting was held yesterday and details are soon to come!