The Past Weekend; from Grierstrong page

I have to say, this weekend more than exceeded my expectations. The abilities Expo not only provided a ton of information pertaining to devices and resources such as recreational therapy in the Northeast but continued to affirm and expand my expectations of life moving forward. I met many more great people who have found life to be that much better after their injury. Their reassuring words help me understand that life will carry on and be as great if not greater than it was before.

At the soccer game that evening I was able to see many relatives; some that I had not seen since my injury. It was great to catch up with them and hear their reassuring words. I’d like to think that at the same time I was able to relieve their conscience as they were able to see, in person, that for the most part I have come around from this injury quite well. Following the game my family and I checked into our hotel and because of the exhausting day we just managed to get into the room before falling right asleep. The entire dynamic worked out much better than expected and was not difficult at all. So I definitely see hotel stays in my future; tropical vacations here I come!

The following day we were up and out of the hotel early heading to the watermelon bash; and what a bash it was. From what I heard this was the biggest turnout they’ve ever had. Being there I could just feel the positive energy in the air; everyone seemed like they were having a blast and I couldn’t have hoped for anything more. Following the fantastic group picture and inevitable long cleanup the brothers and I returned to the house to watch the game and have some lunch. Sitting in the common room with calzones from Boomers and the game on the projector it felt just like old times and I didn’t want it to end. Upon leaving I knew it wouldn’t be long before I was returning again.

All in all this past weekend was nothing less than amazing. I was and continue to be so overwhelmed by all of the support I have received; from my family, close friends, and even the friends that I have yet to meet. I wouldn’t be in the same place I am today without it. I keep fighting for myself but more importantly for everyone around me and without a doubt will never stop.

Thank you all.

Jared Grier

Cooking with disabilities

The Day Program here at Shepherd is centered on returning the patients to being as independent as possible. With that in mind they have a complete kitchen set up for the patients to learn in. This kitchen has all of the things you would find in most kitchens with a little bit of a twist. Everything has been adapted so that patients with disabilities can use all of the tools and appliance. The counter height is adjustable, appliances are lowered to be within reach, loops are installed on doors to allow them to be opened when you can’t pinch, knives are mounted on cutting boards or have adaptive handles etc.  The goal is to show them how they can adapt their kitchens and be able to carry out food preparation and cooking. This also includes going to the store and shopping for the items needed to prepare a meal.

This week Jared went with two of the other patients to a local grocery store. They made a list of items they would need to prepare a meal, which turned out to be pizza and they set off to gather these items. This gave them a good idea of what types of issues they may face in the future when going to the store on their own. They had to get all the items into their carts and bring them to the cashier for checkout including paying for them. These are things we all do without even giving it a second thought. When you are disabled everything takes on a whole new challenge. Just pushing a grocery cart around the store while also pushing yourself in a wheel chair can be difficult never mind trying to get something off the shelf that is to low, to high or a shape that you can get you hand around to grip. As it turns out most everything is one of those or most of the time a few of those things so asking for help from time to time becomes part of the new normal. Even after gathering everything you want there is the struggle of getting it on to the checkout belt and paying for it. Managing a wallet takes on a new meaning as well.

Okay so the shopping part is complete. Now they head back and put all the items away. Yes this to is good to go through so when they returned from the store everything was put away as any of us would do after going shopping. With the limited time we have each day we had to wait until the next day to actually prepare the meal.

Meal preparation started with a little discussion between the guys to see who would take on different aspects of preparing the pizzas. As it turned out they all worked quite well together and their cooperation and efforts paid off. One of the things Jared took on was slicing up the peppers and onions. This can be a challenge for some people without a disability so just imagine what it would be like trying to do this when you have no control of your fingers. However with a few adaptive tools and a lot of determination it is amazing what can be accomplished. Jared was able to cut the items up with very little assistance and without cutting any of his fingers. 🙂  They have some good ideas on how we can make cutting tools that will allow Jared to cut up things when we are home very safely and effectively.

The guys worked together passing the two pizzas back and forth so they all had a chance to take part in different aspects of the preparation. Once they were completed they even had to place them into a 425 degree oven and when your face is close to the lever of the oven you get a new appreciation for just how hot that is. All turned out well and 15 minuets later there were two amazing pizzas sitting on the table ready to be eaten.

It was great to watch them go through this process and even better to see how happy they were with their creations. They all had a few pieces and I even had a chance to have a piece. I will say their pizza was better than the one we ordered from a local restaurant. Looks like Jared will be making us dinner once we are home in no time.

 

imageAdaptive cutting board with the tip of the knife attached to the board and small pins sticking up to secure whatever is being cut.

imageAdaptive knife that allows Jared to hold it and rock through whatever he needs to cut.

imageProud chefs 🙂

imageThe finished product, or what was left by the time I got to take the picture.

 

New Wheel Chair

New wheel chair received on August 19th.

Just as the inpatient program was ending Jared received his new wheel chair. This is a chair that Jared picked out and had a number of different options selected to his liking. The frame, wheels, seat, brakes, and type of material it is made of and the color all can be personalized. From what we saw for options when making these selections Jared was happy with all of the choices. Unfortunately insurance does not cover all of these options and of course there are up charges when making changes. The new chair arrived the night before we were to be discharged so the final fitting and adjustments were a bit rushed to say the least. Overall the chair was what Jared was hoping for but a number of the options he had requested were not received at the time of delivery so we had to wait until we returned for the day program to have those added.

The options he had requested that we did not receive were a Smart Drive, Disc Brakes and a single caster wheel for the front of the chair. The Smart Drive helps to push the chair when going long distance and up hills. Even the slightest incline can become a big challenge to get up when you are in a wheel chair with Jared’s level of injury. In fact Jared’s level of injury qualifies him for an electric wheel chair. The unfortunate situation is that the insurance company would pay the 18K to 20K price tag for the electric wheel chair because of his injury level but they will not cover the $6200.00 cost for a Smart Drive. Jared does not want to be in an electric chair so he can get stronger and improve his independence. The Smart Drive is just the added push he needs to help him overcome his weakness until he gets stronger. It also allows him to be more independent when traveling as the Smart drive is very small and portable unlike the 400lb electric chair. The problem we face is if Jared stays in the manual chair without the Smart Drive he could possibly over use his arms and damage his shoulders before he is able to get them strong enough to get him where he needs to go. So we now need to decide do we get him the electric chair now and not have a manual chair or do we get the manual chair and pay for the Smart Drive out-of-pocket. The frustrating thing for us is the manual chair plus the Smart Drive is still thousands less than the electric chair and it is a much better combination for Jared’s long term independence but the insurance company does not look at it that way so we are stuck. The funny part is if Jared goes with the manual chair without the Smart Drive, injures his shoulders and can’t push the manual chair then the insurance will cover the electric chair effectively paying for both chairs in the end.

The disc brakes were thought to help with going down hills as the Smart Drive only pushes the chair. When you go downhill with the Smart Drive on it just increase the speed which can be very dangerous to say the least. What the user has to do is turn off the Smart Drive when going downhill and manually brake the chair. This again is very difficult for someone with Jared’s level of injury as all he can do is press his hands and wrists against the outer side of the push wheel to create friction and braking. The thought was to have disc brakes added so Jared would be able to apply some braking action without fully locking the wheels. Most all of the wheel chair brakes are designed to hold the chair in a stationary position and are not intended to slow the chair. The disc brakes however can do both. The problems we ran into were that Jared can only use one hand to brake so both wheels needed to be connected to one lever. This had the potential of turning the chair if one wheel or brake were to grab more than the other. Also to have the brakes installed would be an additional 3K plus and we were just not going to spend that much on something we could not test first to make sure it would work as expected and provide Jared with the control he was looking for.

The last item is the front castor or FreeWheel. This easily attached to the front of the chair with a built-in clamp system that Jared can operate himself. The FreeWheel lifts the front small caster wheels off the ground and provides a larger single wheel that can easily go over rough terrain. Jared is hoping this will make taking his chair on our gravel driveway and down to our pond much easier. We have just received this unit today and it looks like it may provide the needed assistance to navigate those rough areas. It does make the chair more challenging to steer but we still need to make some adjustments so with any luck we will be able to adjust the FreeWheel and Jared will be able to easily get down to the pond and maybe even do a little fishing.

Fortunately as we are back at the Shepherd Center they do have a seating clinic and technician’s that can make adjustments to Jared’s chair. We had them make several adjustments yesterday as there were so many little things Jared wanted to have adjusted to have the fit of the chair just right. We will use the chair for the next few days to see if everything works as expected or if some additional changes are needed. The nice thing about this wheel chair is that everything is adjustable so with some time we will be able to get it to fit Jared just as he wants it. I never knew how much effort went into getting a chair to fit correctly. I just assumed that you would get a chair that was your size and that would do it. With Jared being in the chair for most of the day it is much more important to get the right fit. Nothing like the wheel chair I used for school when I had a broken leg. The improvements in wheel chair technology over the years is amazing.

 

 

imageFreeWheel installed on foot plate.

 

image Smart Drive attached to wheel axle.

image Smart Drive attached to wheel axle.

 

Day program update from John

image We went out to eat dinner a few nights ago and after ordered desert. Jared used a pizza type cutting knife on his own and was able to slice his desert into small bite size pieces. Next time we will try this type of knife on something a bit harder like some meat to see if he can cut that up on his own as well.

 

We are now through the first week and a half of the day program here at Shepherd. There are many goals we would like to achieve while here in the day program. With most things in life we can only do so much in a day and this is no different. We came down here last week wanting to accomplish many things but once we started the program and saw what limited time there was, we modified our goals to be a bit more realistic.

When any of us thinks about life goals they typically are things we see taking place over a long period of time. With Jared and his injury this is no different. Where the difference comes in is what the goals are now. We have goals like being able to get dressed on your own, or being able to get into and out of bed without assistance. It was not that long ago where these were things that didn’t even come to mind never mind being a goal to achieve. These are just a few of the very basic things we now have to figure out how we can accomplish without the help of others.

I have been here with Jared for nearly the entire time from the beginning of his injury and I can say Jared has been able to make tremendous progress. He actually would be a bit further along had I not been around as I provide a bit more assistance then he actually needs. When I watch him struggle it is so hard to not want to step in and help but what he needs is for me to be nearby should he truly need my assistance but to let him struggle. Only when he get upset and angry at himself does he truly push hard. This is where the progress comes from as painful as it is to watch. As parent we never want to see our children struggle and we try to help them and guide them in any way we can. Unfortunately for Jared that is not helpful and he needs to fight his way through to get the most out of his therapy.

One of the nice things about being here at the Shepherd center is we are very close to my brother Marty. He and his wife Karee have been very supportive and helpful in many ways during the time we have spent here. Last weekend Marty came and picked us up to take us out to his house for a much-needed break from the hospital life. We had a nice cook out and relaxing time. On our way to the house getting in the car it is still a big struggle for Jared and we (I) typically help him. This time he didn’t want my help and was determined to get in the car on his own. After several minutes of watching him struggle I had to walk away as I couldn’t take it any longer, watching as he had to put out so much energy and effort just to pick up his legs and get into the car seat. Jared did not give up and he pushed until he succeeded. It was amazing to see and we all applauded him and congratulated him on his success. He was happy he was able to accomplish it but at the same time he was now exhausted and very frustrated. How could something that was such a simple thing to do just a few months ago now take every bit of energy and effort to accomplish. This is why we are here at the Shepherd Center. They help us to learn how to deal with all of these types of situations, how to use the best technique and how to work at getting stronger to make these things easier to do. Just one of the many goals we have when here in the day program.

Getting into bed and then getting undressed presents many challenges. Yes Jared has to get into bed first and then he gets undressed. This can be difficult for anyone to do but imagine only using your arms to move yourself around and to remove your clothes. It is an extremely difficult task. On top of that throw in not being able to use your fingers and the amount of effort goes even higher. What takes most people a few seconds to accomplish becomes a 15 to 20 minute struggle. For Jared these are things that are further complicated as he is dealing with muscle spasms that make it very difficult to move, his legs lock up and stiffen up preventing him from moving them around. Medication and stretching help but this will also be an ongoing battle that we will continue to look for different solutions to provide him some relief. Just one more of the goals we have and will have for some time.

I wish I could tell you all that things are much better than they are. Although we have made tremendous progress and there has been a lot of improvement we still struggle with the basic things in life that we all take for granted. Bowel and bladder are at the top of the list and all spinal injury patients would pick these to get back first if they had a choice. We have been able to move the bowel program to every other day and that has helped to reduce the number of times we deal with that on a weekly basis. Now we just have to figure out the right combination to get the best consistency so the DIL program is successful. Unfortunately the bladder is a much different issue and this needs to be taken care of every 4 to 6 hours depending on the amount of liquids consumed and the time of day.

With this type of injury the legs tend to fill with water throughout the day as the normal muscle functions that keeps the water from pooling no longer work. At night with the legs up the fluid moves back into the body and into the bladder filling it much faster than during the day. This can push IC volumes to well over the safe 500ml limit. IC’ing every 4 hours tends to keep the volumes down but we have seen several times where the volume is in excess of 750ml. This amount for anyone that is not impaired would have you up and out of bed way before you ever got to that limit. For Jared he does not feel the pressure but his body gets to the point where it releases to reduce the volume and pressure. We call that reflexing. Not a nice way to wake up as you can imagine. There are condom catheters that we use to catch the reflex but those are frustrating to deal with but better than changing the bed in the middle of the night. Add a UTI and reflexing happens even sooner. The good news is that with time and experience these things do get better and can be managed. No drinking water after 7 and keeping the volume down later in the day. At the same time making sure to drink enough water throughout the day to prevent a UTI in the first place. A difficult balance to achieve. This is and will be an ongoing process that is now part of our new normal.

I wish I had the energy to put more posts out but at this point I typically only get a few hours of sleep each day and I just have had a hard time finding the strength to add this to the list of things we are dealing with. I will try to put out a few more updates as there is still much more to say about all that we are dealing with. For now just know we think of everyone out there that is keeping us in your thoughts and prayers. We have come a long way and the support and caring we have seen from so many is truly uplifting.