December 6

To say I got a lot out of this weekend would be a huge understatement. I think most people go to these things and see most of what they want in one day, but because all of this is so new to us, we went to literally every booth and attended all three days. Here's just an overview of who I met and what I talked about:

• DRIVING!! This gets to be number one because it's what I'm most excited about. I've talked about it before and how much I miss it. You don't really realize it, but it's a major source of independence and freedom and I long to have that again... not even so I can go anywhere in particular, but just so I can go...whenever and wherever I want. This connection went so well that I had Dr. Kozlowski sign my referral form yesterday when I went in for blood work and they called me today to schedule my evaluation appointment!! I can get this whole process started with my eval appointment next Wednesday! I think the process still takes awhile, but they will be able to tell me what to do, what equipment would work best for me, what car to look at, etc. (because remember, James so nicely totaled my car for me this summer, so add that to the expenses we're dealing with).
• Therapy dogs!! I didn't know how much they can do for someone. It's a lengthy process (as in a couple years), but the more I talk to people, they think I'd benefit even more from this once I'm on my feet. Needing to bend over when using a cane or walker will be difficult and I may just feel unsteady in general. But what I really didn't know was that there are organizations that pay for the dog (otherwise, I think it can be around $50,000!!!). It's an intensive application process, but they advised me to go ahead and get started. I figured I could give it a shot and if it works out, then how great?!
• Adaptive sports...I've said it before and I'll say it again, I'm anything but an athlete! Seriously. It's torture when a therapist brings out any kind of ball and wants to play catch, but after my amazing experience surfing, I'm willing to try anything once. One guy had some adaptive equipment set up and I was able to look at the skis (I agreed to do that in a couple months with no idea what I'd actually said yes to, haha) they were awesome!! There are double skis and mono skis and the seat has to ability to raise and lower, allowing you to slide onto the lift...which by the way, never crossed my mind before. I'm sure I wouldn't have thought about it until I got there and then would have started freaking out about how I was getting on and off the ski lift.
• I talked to a lot of people about advocacy. I want to get involved in as much as I can now, so that I can really put that MPH to good use when I get it. 
• There was an awesome stim unit that could hook up to a large number of muscle groups. They put it on my shoulders and showed me the numerous settings and I was amazed that it actually felt like a massage chair, not the typical uncomfortable feeling you get from stimming a muscle. It's actually called "EMS" therapy and because it helps so much with soreness, like in your shoulders from pushing all day, insurances usually cover it. 
• There's something called a "smartdrive" that I kept trying out and hooking to my chair. Insurances usually cover this as well and it's like a little battery pack that gives you extra power. It makes going over carpet and up hills a million times easier and really saves your shoulders from over doing it. I also liked that you could have something in your hands or on your lap and not need both arms to push yourself, just one to help steer a little bit. And you could push a shopping cart in front of you at the grocery store. I'm already in contact with the rep and going to have Erin at KKI help me with that process. 
• A chiropractor. He works with different SCI patients and is located about an hour from my home, but I talked with him about whether I'd benefit from that kind of therapy or not. He did a short assessment and could tell I had activation all the way to my toes. He asked me a few questions and told me that because I have some impaired sensation, a chiropractor may be able to tell if I'm tender or tight in certain areas better than I'd be able to tell. By working out those areas, you may get a better response from the nerves in different areas. He said "I'm not saying that seeing a chiropractor is going to make you walk tomorrow or anything, but I really do think it might help speed up this process for you." The main thing is that I'd have to see something with experience and the willingness to work with a case like mine. Someone that is going to do their research and not take any unnecessary actions. He's already looking into helping me find a doctor closer to home so that I can give it a try...if he doesn't have any luck, I wouldn't mind driving to him because he was so knowledgeable. 

I'm still overwhelmed with the vast amount of information I was given and I'm sure I'm leaving some things out, but one thing that really stuck out all weekend was how many people stopped me to ask about my chair. Vendors, patients, etc. all told me how awful it was. It doesn't fit me like it should and I'm over working myself, putting in way more effort to get around than necessary. I even went to a wheelchair skills workshop because I wanted some help with wheelies and curbs, which are even harder since I got my new backrest and seat cushion. I thought it was just me, but the people working the clinic even stopped after about thirty minutes and said it really wasn't my lack of being able to do the different skills, it had more to do with my chair and how "off" it was. The axels for the tires aren't in the right spot to make pushing easier and because of that position, it's heavier in the front, which explains why I can't hold a wheelie or why I have to tip so far back to find the balancing point of being up on two wheels. Even James got in one of the vendor chairs and was doing wheelies like it was no problem and said he can't even do one in my chair. The people at the driving booth told me how much trouble I'm going to have with driving, not because of the hand controls, but because my chair is going to be so hard for me to get into the car by myself. (how ridiculous?!!) So, I met with Permobile, who makes chairs called "TiLite." They have both aluminum and titanium frames (both which are lighter than mine), but the titanium was unbelievably light. I could lift the entire chair over my head! haha, and that is with some impaired core strength, so that tells you how incredible they are. The rep from the company took the time to really educate me about what I should look for in a chair and how it should fit me. I mean, even little things, like that my foot plate doesn't need to be 14 inches wide and that any time you have a movable piece (like a footplate that flips up instead of a stationary one), it adds weight. He went ahead and priced out a whole new chair, like what I'd do if we were to start completely over, so that it was in their database and so that anyone would be able to pull it up. I sent an email to Erin at KKI, who does a lot of things in their wheelchair clinic, so hopefully she can help me figure out what to do next. Everyone seems to think I need to get in touch with the company that oversees all the other companies that made the parts to my chair. The seat cushion, back, tires, frame, etc. are all made by different brands, so if we get in contact with the one that oversees them all, explains that this chair has never once been right, maybe they'll be able to shed some guidance on how to handle things.

It's incredible to think about how much time would be saved and how much happier everyone would be if we lived in a world where people just did their job right the first time.