Overcoming Travel Fears

Every vacation takes loads of planning, packing and making travel arrangements. Now that the kids are grown, we don’t put as much effort into traveling, but I’m grateful for the memories of a few wonderful trips. It’s much easier to stay home since Mark’s daily care requires special equipment for the bed, shower and commode. The tools we use daily which make it physically possible for me to take care of Mark is not gear that fits in the luggage.

We also have a customized van with a ramp which enables Mark to stay in his wheelchair as I secure it to the floor of the van. This saves me from transferring him into a passenger seat, then disassembling leg rests, seat cushion and back before being able to collapse the wheelchair for the ride. We’ve done this routine many times and it becomes physically draining. Mark is a tall man (6’2” to be exact) and getting his legs into a vehicle is always a struggle. Traveling without our van is difficult, but when you fly somewhere and have to rent a van which isn’t equipped for a wheelchair.

In my fifty plus years I’ve only flown six or seven times. Flying with Mark is more difficult since he is totally reliant on a wheelchair since our car accident in 1991. In my article, Celebrating Independence Day, I recalled a wonderful trip we took in 1996 to America’s historical sights. The 2,100 miles across the United States seemed too far to travel in our van for the amount of time we had for the vacation and flying seemed impossible. I was concerned about the challenges of getting Mark on an airplane and storing his wheelchair during the flight. Since the wheelchair is his only means to get around, it’s stressful to have it out of sight. My imagination ran wild with worrisome thoughts of someone taking it, or the possibility of it getting lost, or put on the wrong plane. I was also concerned about the layovers and getting on the second flight and what if Mark needed to use the bathroom while on the plane? Have you ever noticed the aisles in the airplanes are not wheelchair accessible and neither are the bathrooms.

Besides worrying about what would happen to the wheelchair during the flight, I couldn’t imagine how Mark, with limited control of his stiff, long legs could fit in an airplane seat with minimal leg room.The flight to Baltimore was nearly six hours. These were huge concerns for me, but my desire to make the trip for our kids was even larger. As I researched the places to visit and made arrangements for our ten day trip my excitement to see the sights outgrew my fears of getting Mark there and not having certain equipment I use daily in his care.

I was pleasantly surprised the morning we boarded the plane. The flight attendants were very helpful and even stored Mark’s wheelchair in a closet just outside the cockpit. Two strong men lifted Mark out of his wheelchair onto a hand truck with a seat on it, strapped him in and took him down the aisle to his seat. They unstrapped him and lifted him up and into the seat. We were the first to get on the plane. They made sure we were comfortable and situated before letting the other passengers on. We were also the last to get off the plane with the same routine in reverse.

I have been asked if it ever crossed my mind to leave Mark home with extended family and just take the kids on vacation. The truth is I never did consider leaving Mark behind. Even if he wasn’t willing to go, I wouldn’t have felt comfortable leaving him with someone else. Mark loves outings and especially when it’s with family. He’s always game to try anything and has total trust we will take care of his needs wherever we are. We’ve taken him boating, rafting, on a tram ride, canoe, bus, carriage ride and on a train. None of it was easy and sometimes the ride was too rough for his body to really enjoy, but he always wanted to go. When strangers are lifting him out of his chair into an airplane seat or boat, he remarkably shows no sign of panic. He has good reason to fear because he doesn’t have any control of where he lands, but Mark stays focused on where he’s going instead of how he’s getting there and puts trust in whoever is helping him. No anxiety, he only expresses appreciation in all the efforts made in his behalf. This makes taking him everywhere a rewarding experience.

Luckily, we have family and friends who willingly help us do activities which would be impossible to do without their assistance. These are people who want our lives to be enjoyable by sharing experiences most people take for granted. When we were in Philadelphia, Mark and I planned on staying back while the rest of the family took a carriage ride. My brother, Steve, wouldn’t stand for that. He insisted we lift Mark into the carriage and all take the ride together. I was more worried than Mark, but I followed his lead and stayed focused on the event which helped me overcome my fear.

Philadelphia carriage ride

Happy memories. I’m so glad we made the trip!

A Blessing in Disguise

There is always plenty of work to do and the holiday season is no exception. Thanksgiving dinner was wonderful, but a lot of work. After hours of preparation, there’s the cleanup. What about Christmas? There’s more preparation for parties, dinners, decorations, shopping for gifts and all of this is done after employment hours. Sometimes I wonder why we do so much. Work can be stressful, strenuous and difficult. During those times I’ve dreamed of a genie (pun intended) granting my wish for less work and more play. In my youth, I also loved to watch the fantasy comedy sitcom, Bewitched. I’ve thought how awesome it would be to have the magical ability to accomplish anything with a twitch of my nose, clap of my hands, or a snap of my finger and thumb, eliminating all the hard work.

Have you ever thought of work as a blessing? Usually I think of it as the means to provide for the necessities of life. Without work, how do you pay for, prepare for, or participate in recreational activities and vacation time? Everything takes work, including the fun times.

I didn’t realize the worth of work until after our car accident, which made it impossible for Mark to continue in the electrical career he was schooled and trained in. He dedicated twelve years to the trade and was successful, reaching the highest level as a master electrician. After eighteen months of rehab, he was anxious to get back to work. Realizing he wouldn’t be able to work as an electrician while in a wheelchair, he asked every day what he should do with his life. He said he needed to be productive to have self-worth and wanted a purpose for life. Work provides purpose.

It was hard to imagine what he could do or that any other kind of work could bring him the fulfilment the electrical field did. I tried to convince him that rehab was his job. His focus should be regaining his physical and speech abilities so that he could go back to work as an electrician. Two years passed and he continued with his rehab, having eye surgery to fix his double vision and two surgeries on his feet to correct the foot drop, which made it difficult for him to stand. He continued to ask often when he could go back to work. I hadn’t realized before how important work is for making life worthwhile. Sometimes we don’t appreciate what we have or what we can do until it’s no longer available.

We volunteered at our children’s elementary school twice a week, reading with the kids or helping with math and spelling. Mark enjoyed the kids, but sometimes they couldn’t understand him because of his speech impairment. Children are so honest and they would ask him often what happened to him or why he couldn’t walk or talk. These comments appeared to bother me more than Mark, who is accepting and understanding of others curiosity. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried our children might become discouraged or uncomfortable with our circumstances so I thought it would be best if we volunteer elsewhere.

After checking into options with our church, Mark was able to do some volunteer work at the Bishop’s Storehouse posting food orders in the computer twice a week. He also went to my brother-in-law’s family music store to stamp their logo on their sheet music at Day Murray Music. He enjoyed and appreciated the opportunity to go to these places and volunteering his time, but he wanted to financially contribute to our family needs.

The next year brought two more surgeries to fix Mark’s hip joints, which were filled with calcium, making it impossible for him to bend at 90 degrees. With his sight still set on getting back to work, I heard Mark often rehearsing electrical codes or terms so he wouldn’t forget them. He wanted me to pay the fee to keep his Master’s License current, but he was willing and wanting to do any kind of work until he got back on his feet. I had a hard time envisioning him finding any kind of employment because he was dependent on me for most tasks of daily living such as dressing, transferring in/out of the wheelchair and transportation, but wanting to support his goals, we pursued Vocational Rehab.

Mark at work desk at Discover Card

The male crew in the mail room

He went through an intense week of testing. His I.Q. score was higher than normal, but his physical skills were low. The program helped place him in a part-time job at Discover Card. He did computer work recording P.I.N.’s (personal identification numbers) and enjoyed that job for eight years until they closed down the mail center. This was the appointed area for all the eight employees with special needs. They worked together with one supervisor who was trained to oversee and help each individual accomplish their job. Most of the special needs employees sorted the mail to the various departments and delivered them there. Mark worked on the computer, but because he needed help getting to and from the Paratransit bus to his desk, the restroom, lunchroom plus make sure he was stocked with the paperwork needed for his computer entries, his work desk was located in the mail room. He couldn’t do this job without the help of the supervisor. The group of special needs employees were devastated when they were replaced by equipment which sorted and delivered the mail to the various departments in 2004.

2004 Discover Card mail room crew

What do we do now? I knew it would be hard to find a job where Mark would be safe and get the help he needed to accomplish work tasks. I also knew he wouldn’t be satisfied being at home every day without work. I learned the importance of work and realize its worth is so much more than the monetary value. Work brings happiness.

Work is a blessing in disguise. We may curse it and wish we had less of it to do. I no longer dream of a genie to lighten the work load, but rather one who could help us find work for Mark. It would be nice if I could twitch my nose, clap my hands, or snap my finger and thumb and make a job appear.

On Tuesday I’ll share with you tips on how we found work for Mark.

Our Timeline for Wheelchair Ordering

Mark in new recline wheelchair with adjustable leg rest.

On March 18, 2014, I posted an article titled Wheelchair Ordering Tips. I listed the seven required steps by the medical equipment store and insurance company to get a new wheelchair.

My experience has been that buying a bicycle, car, truck, or any other form of transportation is easier than buying a wheelchair.  With all other forms of transportation you have the opportunity to test them and reject if they do not fit your needs or standards. With a wheelchair you don’t have that option. The wheelchair specialist told us, “There is no option to return because it’s been specifically ordered this way by the doctor and therapist.”

I have three problems with their policy:

1) The wheelchair specialist makes the recommended order after coaching the doctor and therapist and reviewing what is stated in their “Letters of Necessity”.

2) The wheelchair specialist, doctor and therapist don’t use the wheelchair; therefore they can’t know if the wheelchair will meet all the needs of their patient.

3) You don’t even get to see or feel the actual frame, back, cushion, seat pan or leg rest until they all arrive, therefore it is impossible to know how the wheelchair dependent person will fit or feel in the chair until it arrives. The wheelchair specialist can make some adjustments, but when it was still not right we were told, “There has to be some give and take.” Well, in this situation it feels like we are all “give” and the medical equipment store is all “take”. This system of ordering and buying a wheelchair is definitely inefficient.

This is our timeline for the ordering process:

October 16, 2013 – Mark’s doctor’s appointment for wheelchair prescription.

November 7, 2013 – Required appointment with a Seating/Rehab Specialist and Occupational Therapist to establish what Mark would need.

November 25, 2013 – An additional doctor’s appointment was required for a “Face to Face Evaluation” for the “Letter of Medical Necessity” to be sent to the local medical equipment store to send to the insurance company.

November 29, 2013 – Doctor’s “Letter of Necessity” was received by the local medical equipment store.

January 2, 2014 – Required occupational therapist’s “Letter of Medical Necessity” was received by the local medical equipment store. Ball dropped by therapist and wheelchair specialist. This step was completed after my phone calls to both therapist and specialist.

January 24, 2014 – Local medical equipment store sent information to insurance company. I do not understand why the letters were not sent immediately. It took twenty-two days and my prodding to fax the two letters to the insurance company.

January 28, 2014 – Insurance company sends approval notification.

February 5, 2014 – According to my phone call, local medical equipment store sent order for wheelchair to out of state supplier.

February 10, 2014 – According to my phone call, out of state supplier shipped wheelchair from Arizona to Utah.

February 26, 2014 – According to my phone call the local medical equipment store said they only have the cushion seat.

March 17, 2014 – Five months from our first appointment with the doctor the wheelchair finally arrives. We had to reorder cushion, seat pan and leg rests. These original items did not fit Mark’s need.

Mark needs seat pan for stability. Standard fabric bottom does not give enough support.

Recline levers

May 20, 2014 – Seat pan and leg rests arrive two months after they were ordered, a total of seven months from the beginning of this process.

Because it is getting harder for me to transfer Mark in and out of the wheelchair, it was recommended we get one that reclines so Mark could have a change of position.

 

This chair is manually reclined by pushing two levers in the back of the wheelchair, making it impossible for the dependent to do their own reclining. Mark has enjoyed this feature, but because it reclines the wheels are set back on the frame, making it harder for Mark to propel. Now I need to push him around almost everywhere.

 

 

Left leg rest – adjusted down
Right leg rest – standard

Left leg rest – adjusted up
Right leg rest – standard

The leg rests were also adjustable to correlate with the reclining frame. The problem with those is that when Mark had a seizure or pushed on the foot plates to change his positioning the leg rest would adjust upward and Mark does not have the ability to push the leaver to make them go back down. Try moving around in a house with your legs stretched out twenty-four inches in front of you. The medical equipment store would not allow us to exchange the adjustable for standard leg rests. We had to order new standard leg rests for an additional $210.

The frame is longer than the previous chair, making it harder to turn corners and to get into our van that’s customized for a wheelchair. It also sits higher, so we had to make an adjustment to tables and desks Mark sits at.

When you are confined to a wheelchair fourteen to sixteen hours every day it needs to be comfortable and well fitted for all your special needs. Unfortunately, because of the customization they are expensive and because of the many hours per day they are used, they wear out. About every five years you have to go through this drawn-out and frustrating process. The total cost thus far is $8,629.

What I have learned from this experience is that the wheelchair ordering system needs to change. Pictures don’t cut it. Next time we order, I will have my own requirements:

1)    I will have to see and maneuver a like wheelchair frame before we order one.

2)    I will have to see and feel the recommended cushion and back before it’s ordered.

3)    I will have to see and work the leg rests if they are not the standard ones.

4)    I will have to have an estimated cost of each item ordered.

5)    In the future, because my requirements will probably delay the process that has taken seven months in the past, I will need to start this process one year before Mark needs a new wheelchair.

The medical equipment store has a captive clientele and they are being treated unfairly. If we request seeing and trying a similar wheelchair out before ordering it, most likely we will get what our loved one needs at a cost we are prepared for.

Wheelchair Ordering Tips

Buying a bicycle, car, truck, or any other form of transportation is exciting. The ability to get you where you want to go is often taken for granted until it breaks down or becomes hard to use. For most transportation vehicles you’re free to shop around, try out different makes and models, and buy the one that fits your needs.  However, buying a new wheelchair is unfortunately different. If you’ve never bought a custom wheelchair or needed one to get you everywhere you want to go, you’re probably wondering, what’s the big deal! You go into a Medical Equipment Store and try out a few different wheelchairs to see which one fits your needs the best, then order the perfect color and in a day or two have your new wheelchair.

If I could have it my way, it would be done in those three easy steps. But here’s the real deal:

1)      Get a prescription or order from your doctor to start the process.

2)      Meet with a Wheelchair Specialist to discuss the necessary parts for your special needs for comfort and mobility. Unfortunately, there’s no guarantee these parts will work because you’ve never tried them before or even physically seen them. Sometimes it’s a picture from a catalog or the internet.

3)      Meet with an Occupational Therapist (O.T.) or Physical Therapist (P.T.) to assess your needs and discuss the recommendations from the Wheelchair Specialist. The therapist needs to write a “Letter of Medical Necessity” for the Medical Equipment Store to submit to the Insurance Company.

4)      Get another doctor’s appointment to review the recommendation from the Wheelchair Specialist and O.T. or P.T and get a “Letter of Medical Necessity” for the Medical Equipment Store to submit to the Insurance Company.

5)      Make sure the Medical Equipment Store gets both “Letters of Medical Necessity” and submits it to the Insurance Company for authorization.

6)      Wait for the Insurance Company to send confirmation of coverage. Once you’ve received the authorization notice, make sure the Medical Equipment Store orders the parts which consist of a frame, seat, back, leg rests and arm rests.

7)      When all the parts arrive from various manufactures, the Medical Equipment Store assembles it. Once the parts are ordered and the wheelchair is assembled, you finally get to try it. If it doesn’t work, you get to start the order process again for a different part.

 

When you are confined to a wheelchair fourteen to sixteen hours every day it needs to be comfortable and well fitted for your special needs. Unfortunately, because of the customization they are expensive and because of the many hours per day they are used, they wear out. So about every five years you have to go through this process. The expense is outrageous, several thousand dollars, and you don’t know the total cost, or your deductible portion until the wheelchair is delivered. The drawn-out process and frustration of orchestrating each step is tiring. You need to supervise every step or they don’t get carried out. If too much time passes the Insurance Company can back out and you have to start the process all over again.

Mark enjoying his new reclining wheelchair

Personally, we started this process on October 16, 2013 with the first doctor’s appointment.  Yesterday, March 17, 2014 (our lucky day) Mark finally got his new wheelchair. Because it is getting harder for me to transfer Mark in and out of the wheelchair, it was recommended we get one that reclines for change of position. It’s very nice, but because it reclines the wheels are set back on the frame, making it harder for Mark to propel. Also the frame is longer than the previous chair, making it harder to turn corners and get into our van that’s customized for a wheelchair. It also sits a little higher making in impossible to get under the table and desk. We’re giving it some time to see if we can make some adjustments, but at this point we are unsure if this wheelchair was the best option for Mark. Unfortunately, this isn’t something you can resell and buy another.

My advice: start this process before your wheelchair needs replacing. If you wait until you need a new one, you’ve waited way too long.