Wheelchair Progress is SLOW but moving forward

The last meeting with Rehab Institute of Chicago (RIC) was November 5, 2009. Now almost 1 month later on Monday evening we received a phone message from RIC saying they finally have finished the paperwork which states that in their opinion I need a new wheelchair. Yesterday, Thursday December 3, 2009 we sent an email to Rehab Tech, the company who will order the new wheelchair, and once they receive it make the special modifications I will need, telling them the letter of medical necessity was on its.

However, Rehab Tech hadn’t received the letter of necessity from RIC yet. I assume it is in the mail and just hasn’t arrived yet. Our contact person at Rehab Tech said once they receive the letter of necessity they will fax it to my neurologist for her signature. Then once they have the doctors signature they will send all the paperwork to our insurance company.

So it seems to me that we have completed only the first two steps in the process of getting the new wheelchair. There are many more steps that need to be completed in this process and all of these steps take time. The next most important step is to receive approval from the insurance company. Once that huge hurdle is behind us it will just be a matter of time. However, until that hurdle is behind us there is still a real possibility that the insurance company will say that in their opinion I don’t need this new wheelchair.

I think it will be many more months before I see this wheelchair.

Wheelchair Request Slows Down

On October 15, 2009 we had our first appointment with Rehab Institute of Chicago (RIC). You can read about this visit at The Process Begins for a New Wheelchair. On November 5, 2009 we had our second appointment with RIC. I wrote about this visit at The Wheelchair Process Continues.

One week after the second visit with RIC we checked with the medical supply company about the Letter of Medical Necessity only to be told that the person in charge of creating the Letter of Medical Necessity, which will be forwarded to my doctor for a signature, had to unexpectedly take some time off work. I understand that the unexpected happens so decided to wait another week and check on the progress of the Letter of Medical Necessity.

On Thursday November 19 I sent an email to the person in charge of the Letter of Medical Necessity to check on the progress. I received an email in reply stating that they are still waiting for the physical therapist from the Rehab Institute of Chicago (RIC) to send them the Letter of Medical Necessity. They told me that they would send RIC an email asking about the progress of my Letter of Medical Necessity. On Friday when my wife P. followed up with RIC by phone, she was told the person who was to write my Letter of Medical Necessity had taken the day off work.

It has been two weeks since we were at RIC finalizing what I needed and which wheelchair best fit my medical needs and now I find out that nothing has been done about sending my doctor a Letter of Medical Necessity for her signature. I wonder if we hadn’t followed up with the medical supply company how long my request would have sat on someone’s desk with no progress.

Even after the medical supply company receives the Letter of Medical Necessity from RIC, they have to send it to my doctor’s office. After the doctor signs the letter it must be returned to the medical supply company. Then they must create a document containing the Letter of Medical Necessity and a quote for the wheelchair. The insurance company must decide if they will pay for this new wheelchair or not. If the insurance company approves the request, the medical supply company creates an order and sends the wheelchair order to the manufacture. Because these wheelchair are all custom built, the order is placed in their wheelchair build queue.

As you can see there are many, many stops in this entire process where the wheelchair request can either be lost, or just sit on someone’s desk waiting to be uncovered. At the risk of being labeled a pushy pest, I will continue to keep a close eye on the progress of my new wheelchair request.

The Wheelchair Process Continues

On Thursday Nov 5 we returned to the Rehab Institute of Chicago (RIC). This time the people at RIC had finished their research and had a wheelchair they wanted me to try. They had considered our concerns about having a wheelchair that would work in our house. We had a number of specific concerns. Would a different wheelchair still allow me to get to the shower? Would a different wheelchair make it possible for me to remain in the chair all day? Would a new wheelchair allow me to have both the ventilator and humidifier mounted on the wheelchair? Currently I must transfer from my wheelchair to my recliner and back to the wheelchair a number of times during the day. Having both the ventilator and humidifier mounted on the wheelchair would mean I wouldn’t need to connect and disconnect the humidifier from the ventilator every time I transferred. Both connecting and disconnecting the humidifier and transferring are becoming a safety issue. Finally we had a concern about being able to use the new wheelchair in our existing van.

We were both pleased to see that the wheelchair they thought would work for us had a slightly shorter footprint. Also the seat height from the floor appeared to be about the same as my current wheelchair. After spending some time reviewing and addressing our concerns they wanted me to transfer to the new wheelchair and take it for a test drive around the hallways. I was pleasantly surprised; the new wheelchair was much more comfortable than my wheelchair. This is important because one of my goals is to be able to spend my day in the new chair and for that to happen the new wheelchair must be at least as comfortable as my recliner.

After spending about one hour in the new chair while discussing additional options, things like a laptop computer tray, I would need on a new chair it was time to transfer back to my wheelchair. I really didn’t want to transfer. One reason I didn’t want to transfer was I had reached the end of my energy level and was totally exhausted. Another reason was that my wheelchair isn’t a comfortable chair, when we got it 7 years ago; the sales person hadn’t order the correct length seat. Also my health condition has changed, I have gained weight, must use a ventilator, have trouble seating upright plus many other health changes. All combined contribute to making my wheelchair uncomfortable.

After spending about 2 hours at RIC, they had all the information they needed. Now they write up everything I need on the new wheelchair and send a letter containing the new wheelchair specifications to my neurologist for her signature. After receiving the neurologist signature they submit everything to our health insurance company for their approval, something I hope we receive. Once they have received the insurance company approval they will order the wheelchair from the manufacture. Then once they receive the wheelchair from the manufacture they will make the additional modification to the wheelchair for my special needs. They told us that hopefully sometime in February 2010 I will receive the new wheelchair.

After I have the new wheelchair, I must contact my handicapped van manufacturer and have them come out and install the electronic locking system for the new wheelchair in my van. So as you can see, we are only at the beginning of an extremely long process.

Busy Candy Weekend

Late Thursday afternoon our oldest son C, daughter in-law K and grandson L arrived. They were spending a couple days with us because L had a couple of days off at his school. Because they arrived shortly before supper and because L was tired, he and I didn't do much on Thursday.

Friday morning I got up at my usual time and tried to not make a lot of noise downstairs by using my wheelchair at a very slow speed. However, I was just turning on the coffee maker when I felt another presence in the kitchen. I turned around to see that L was up and ready to watch some morning children television shows. He had our youngest son rather large stuffed cow sitting on his shoulders.



I poured my coffee and the two of us went into the den. It was about 6:30 in the morning and L isn't allowed to turn on the television before 7 AM. I wrote my usual morning email that I send to my entire family and extended family. And I read my emails, checked the local newspaper and drank my coffee. L spent the time looking at some books and asking me if it was 7 o'clock. Poor L had a hard time keeping quiet and staying settled down. After all this past Friday was when he, his parents and his grandmother were all going to a LEGOLAND Discovery Centre and I think he thought everyone should be up and getting ready. In fact everyone did get up and they all were on their way shortly before 9 A.M.

They spent most of the day at the LEGOLAND Discovery Centre arriving home just before 5 P.M. As soon as they all were in the door L asked his father to help him put together the Lego kit he had purchased at the store. So while Grandma made supper, L and his mother and father sat on the den floor and assembled a Lego race car.

L had slept most of the trip home, so after supper he spent time in my bedroom setting in my wheelchair while I was in bed. There the two of us spent the next 1 ½ hours watching television. He would constantly make comments on the shows or would ask me questions about the show which I tried to answer using one or two words. I think L has a difficult time figuring out why his Grandpippy doesn't talk much.

Saturday morning we all woke up to a nice partly cloudy day. Once again L and I watch television while waiting for the rest of the family to wake up. Now on Friday we had receive a couple of inches of rain making it a great day to spend indoors. However, now with the better weather L and his Grandmother decided to go to a local orchard. Son C and daughter in-law K stayed home with me. I did my normal routine of doing Sudoku and jigsaw puzzles while they spent the morning relaxing. Late Saturday afternoon our daughter and son in-law and some friends with their two young kids came. After a light supper, everyone went out Trick or Treating. They went down one side of our short street and back up the other side arriving home with each of their pumpkin buckets filled to overflowing.
However, before they went Trick or Treating L had to have his Uncle K take his Lego race car apart and rebuild it in a different race car model.

By mid morning Sunday everything was back to our normal live again. I however had a Great Lego weekend.

Visiting Weekend

It started on September 26, 2009 after K and C’s wedding my younger brother C came to me and told me that he, my son J and my son in-law K were talking about getting together to make beef jerky. My brother C said it would work for him to come Friday October 23 and he and the boys would make beef jerky.

And so it started. During the past four weeks, I invited most of my nephews to come and take part in this family get together. I also invited my older brother and his wife. However, for one reason or another, my nephews were not able to come. My brother told me he thought they were scheduled to go to visit his wife’s family and wouldn’t be able to come. So despite my best efforts it started to appear that it would not be as large a gathering that I was trying to put together.

About a week ago by my older brother asked if my offer for his coming was still good. I told him “Of course it is still good and to ask his wife along also.” It turned out that his wife wasn’t able to get the time off work. Than on Thursday evening the phone rang and my younger brother’s wife said it worked out that she would be able to come along if we still had the room. Now that we are officially “empty nesters” we have plenty of room so M came along.

I must say that these weekends when my brother and boys get together to make beef jerky aren’t just spent making beef jerky. They often will start the day off with a special type of breakfast and finish the day with a fancy meal. As we began thinking and talking to one another we must have sent between 50 – 75 emails, instant and text messages to each other. The making of the beef jerky wasn’t what all those messages were about; they were discussions about the other food items and the dinner menu. Once the menu was finalized, those messages switched to who was preparing what and did we have all of the required spices at our house or would the need to be taken along from other’s homes. Then there were messages about the types of breads my brothers would make while here. At last all the decisions were made and on Friday afternoon people began to arrive.

My brothers and sister in-law arrived first on Friday afternoon. Just about the time they had unpacked coolers, a dehydrator, a smoker and personal items from the car, daughter K arrived, than her husband followed by our son K and his wife C. Soon everyone was talking, visiting making supper. It was about this time that I ended up feeling totally exhausted, even though I had taken two naps earlier in the day and tried to spend the week resting up for the weekend, so I was in bed before supper. Shortly after supper, my wife P and other son J arrived. P had to work later and J’s train was running late. As each person arrived the visiting became more intense and the laughter more frequent. I sat in my bed watching and listening, not really hearing what was said but hearing how everyone seemed to be happy. Judging from the amount of laughter I would say that everyone was having a great time.

I remember one time a number of years ago when I made jerky, it took P and I 6 hours to slice the meat by hand. Earlier this year, we borrowed an inexpensive home style meat slicer which cut the prep time down to a couple of hours. After finding out how much easier and faster that was, my son in-law talked to his uncle, who works for a company that sells professional meat slicers, about borrowing a used professional meat slicer the next time we made beef jerky. So when K arrived Friday evening he walked in with a professional meat slicer. What took us 6 hours the first time and 2 hours the last time now it took us less than one hour to slice the meat for the beef jerky. In fact my brother only made jerky with a third of the meat he sliced. He froze the other two thirds and took the rest home with him for making into jerky at some later time.

Even though everyone was still busy, I finally had to close the bedroom door, give in to my exhaustion and go to sleep. Saturday morning when I woke up and went into the kitchen to make coffee, I found one HUGE bowl with no knead bread rising. I also found a bowl with a sourdough yeast sponge and two containers, one with whole wheat kernels soaking and one with oatmeal and other grains soaking. Also there was absolutely no room in the refrigerator for anything else. Later, I found out that the overflow refrigerator in the basement was full of marinating meat waiting to be smoked and dried making beef jerky. My older brother D came up as the coffee was brewing and once it was brewed we sat in my bedroom drinking coffee and catching up with each other’s life. Soon the house was busy with people. The four women were going out for breakfast and then planned to spend most of the day at daughter K’s house making applesauce and visiting.

Son J finished the Bacon Sausage Explosion he had on the smoker while brother D made homemade buttermilk biscuits for our breakfast. While they were busy making that my brother C was busy loading his smoker with strips of sliced, marinated beef brisket. It was at this time that we discovered that the weather was too cool and windy causing the smokers to be too cool. Because two of the smokers were electric, we moved them into the garage. But we found out that if we plugged both smokers in at the same time they caused the circuit breaker to blow. So we took an extension cord and plugged it into our neighbor’s garage electric outlet. I don’t know when J and K started smoking their sliced meat but for a while we had three smokers going, two electric and my charcoal smoker.

By early afternoon all of the jerky had been smoked and was being dried. So after a rest period the guys started on the evening meal. Son J. started preparing Braised Beef Shanks with Winter Squash and Red Chard. Brother C smoked half a salmon, made portabella mushroom potato gratin and poached pears for dessert. That along with a salad brought by two of J friends and the breads my brothers baked made for a wonderful evening meal.

Shortly after the meal, J two friends and left to drive back to Chicago. Soon after that K and C also left to drive back to the city. I have no idea how long everyone else stayed up, but when I once again closed my bedroom door everyone was still up. This morning however, once my brothers and sister in-law got up and had a simple breakfast, they loaded the car and were on their way home by shortly after 9:00 A.M.

When son J got up this morning, the first thing he did was to go out and bring in the pork shoulder that he had placed in one of the smokers just before the evening meal and that had been in the smoker all night. He had tried a new rub on it which I liked better than the other rubs he has used when smoking pork shoulder. He used the two fork method to shred the pork shoulder so now we have shredded pork shoulder in small containers in the freezer. I wanted these because on those days P ends up working late, or has some of those too busy days the shredded pork will make a fast easy meal. J then did some work on his mother’s computer, loaded his car and headed back to the city.

It was a thoroughly enjoyable weekend. I love it when the family gets together and spends time preparing different foods. There are many other ways families can get together; weddings, camping trips, family reunions just to name a few. However, I no longer have the energy and strength to attend those types of functions. I can however, enjoy a house full of people. Having the beef to turn into jerky and a meal to prepare give everyone a purpose for being here rather than just visiting me. I find that if I am in my bed with the bedroom door open, I can hear and see a lot of the activity. I also find that doing this allows people to stop by my bed, sit and talk for a few minutes and then go off to attend to something. What a great way to have visitors. They can come and not feel like they have to spend every minute visiting, they can get up and leave the room without feeling guilty and if they can’t think of anything to talk about, they can always tell me how the smoking, or cooking is coming along.

The Process Begins for a New Wheelchair

A while ago I noticed, that when sitting in my wheelchair, I have a tendency to lean forward and that it was hard for me to not lean forward. I also found I was becoming extremely tired after being in my wheelchair for an hour or so. When I mentioned this to my neurologist, she said that the time has arrived for me to get wheelchair that has a tilt and recline feature. She gave me the name of a local wheelchair store so we called and talked to them. However, they told us that they were not qualified to determine which features I would need in a new wheelchair. After calling a number of other wheelchair providers we decided to go to the Rehab Institute of Chicago (RIC). We know that they specialize in helping people who need the type of wheelchair that my doctor wants.

It took about a month before we could get an appointment, but last week Thursday we went into Chicago and had our first meeting with RIC. We were impressed with the service we received. The first thing they did was take a detailed medical history and then they sat and spent time just talking about my daily routine. They asked a lot of questions about the house, the van, how much I spent outside and how I spent my days in the house. They asked if I had a full time helper when P was at work, how I got my midday meal, bathed and dressed. In other words they covered a lot of background information.

I was amazed at the many different styles of wheelchairs available now. There are rear wheel drive wheelchairs, like the one I currently have. There are front wheel and mid wheel drive wheelchairs. There are wheelchairs with feet rests that fold up. There are wheelchairs with feet rests which will swing to the side. Some chairs where the ventilator can be mounted on the back of seat. Then there are other wheelchairs that have an articulating ventilator tray. We found out that some wheelchairs allow the ventilator external battery to be mounted under the wheelchair; other wheelchairs must have a special platform for the external ventilator battery.

As we were leaving RIC, the people we were talking to said they were going to contact a number of wheelchair manufactures with questions that we had raised in an attempt to try to get the best wheelchair to meet my special needs. Because I have been in a wheelchair so long and now will be getting a completely different wheelchair, I have been writing lists of questions and emailing them to RIC.

And so begins the task of trying to get a different wheelchair, one that will better fit me now that my condition has changed. This was only the first step in getting a different wheelchair. After all the RIC appointments we will begin the task of talking to the insurance company to see if they will approve payment for a different wheelchair. If the insurance company, for whatever reason, turns down the request, I won’t be getting a new wheelchair because they cost tens of thousand dollars.

The Wedding Weekend

My youngest son’s wedding was this past Saturday and what a weekend it turned out to be.

It all started about three weeks ago when we called my medical supply company and order oxygen for the weekend. Even though the wedding was in Chicago about 1 ½ hour drive from where we live, we decided to stay in a hotel in downtown Chicago. Staying there would allow me to be driven to the hotel and rest up from that drive. Also all of my siblings were staying at that hotel giving me the opportunity to visit with them. Then on Saturday afternoon, I would be driven to the church, about a half hour of city traffic.

Earlier in the week of the wedding my wife called the medical supply company to check that everything was ordered and that the oxygen would be at the hotel when we arrive. That was when we began to be worried. The office that normally would deliver the oxygen to the hotel was being closed and it deliveries were being done by another office of the supply company. So Friday morning P once again called the medical supply company to make certain the oxygen would be there when we arrived. She was told that it would not be there when we arrived but would be there within an hour of our arrival. So P filled two portable oxygen tanks and we left home and drove to the hotel.

When we had arrived and check into our Handicapped assessable room we discovered that I couldn’t get into the bathroom. So P called the desk and they found another handicapped assessable room, one that I could get into the bathroom. However, this move almost made P late for the wedding rehearsal, so she left me in the care of our nephew T. Because the oxygen had still not arrived, I asked T to call the medical supply company to make certain that the delivery was on the way. After lengthy phone calls with the company T told me that our local office had contacted the Illinois office and assured me that it would be delivered. However as a precaution I turned down the amount of oxygen to a setting below what I need, thus extending the length I would have oxygen. When P returned from the rehearsal the oxygen still had not arrive, so she called the company's after hour’s number. Finally when the delivery person called back he basically told P that it was late and he really didn’t intend to make the delivery. After many phone calls to the after hour’s number and to the delivery person he consented to making the oxygen delivery. However, by this time I was out of oxygen and was beginning to feel the effects of not having enough oxygen. Finally at 12:30 in the morning he showed up with the tank of oxygen. It had taken over eight hours of phone calls and arguing to get the oxygen delivered.

That morning, the morning of the wedding we woke up to beautiful weather, the sky was clear and you could see for miles. P and daughter K left for a breakfast with the bride and the ladies of her family. I spent the entire morning in bed resting. We left for the church early that afternoon. I must say the wedding was just wonderful. The minister had a homily about the meaning of marriage. She mentioned how impressed she was with how the young couple K and C had become involved with the church and the various activities of the church. It was a short ceremony but a nice one. After the ceremony the newlywed couple climbed aboard the tandem bicycle they had bought used and cleaned up and repaired for use in the wedding. As they rode away from the church to start married life, people across the street from the church stop and took pictures and clapped. The reception was at the church and by 6 PM everyone was back at the hotel.





On Sunday morning everyone crowded into our room to visit.



Then slowly everyone started to leave and head back to their homes. We were the last ones to leave for home. I was exhausted by the time we arrived home and spent the rest of the day in bed resting and recovering.

What started out as a disastrous weekend, ended up as a wonderful weekend with wonderful weather for the wedding, allowing the tandem bike ride. I liked the symbolism of the tandem bike because a marriage is like riding a tandem bike. For it to work well both people have to work at it.