Difficulties with traveling with a 200+ pound power chair

The website AbleThrive curates and delivers solutions for life with a disability. Each week, they connect people through social media to share how people participate in daily activities. This week’s theme is #ThisIsHowI travel.

People can post photos and short videos of themselves traveling by any mode of transportation. As many of you know, my mode of transportation is my Toyota Sienna rampvan that I drive with a joystick system.

My most recent trip was this past weekend as a I traveled by charter bus to Ghent, West Virginia.

Traveling by bus with a wheelchair

I joined the Boy Scouts, Cub Scouts and youth group of St. Matthew Baptist Church as we traveled to Winterplace Ski Resort. It’s a trip we take almost every year.

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The wheelchair lift is at the back of the bus allowing a person to stay in their chair while traveling.

A few bus companies have busses equipped with wheelchair lifts allowing people with disabilities to stay in their wheelchairs while on the trip. The chair is tied down the same way as in personal vehicles.

The bus we used had a wheelchair lift; however the company knew the lift’s circuit board wasn’t working. A couple mechanics came to diagnose the problem, but the lift couldn’t be repaired. It was quite an exhausting process to crank the lift to get me and my 200+ pound chair on the bus.

Unfortunately, once we arrived in West Virginia and stopped for dinner, the hand crank broke as I was getting back on the bus. At least the lift could be lowered so that I wasn’t stranded on the platform. Since the electronic system was already broken, the hand crank is the only mechanism to stow the ramp inside the bus.

While a group of people worked on the lift, another set of folks, including myself, called around for a wheelchair accessible taxi or vehicle to get me to the hotel. We were eventually able to get the Princeton, WV Rescue Squad to come to my rescue! I was surprised they have a wheelchair-accessible rampvan! The officer was able to take me and my mom to the hotel.

In the meantime, a mechanic who happened to be at the restaurant when the lift was out of commission, was able to get the broken piece fixed. The lift was then able to be stowed and the rest of the group finally made it to the hotel.

I’m not a superstitious person, but that was definitely an eventful Friday, the 13th!!

To ensure the lift didn’t break down again, I had a few guys carry me on the bus and we stored my wheelchair in the cargo section as we went to and from the ski resort. Once we arrived, everything went smoothly. Everyone enjoyed shredding on the slopes and had a good time! I didn’t try adaptive skiing this time, but may give it a try the next time.

On our trip back Sunday, we tested the hand crank and I was able to stay in my wheelchair all the way back home.

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Winterplace Ski Resort – Ghent, West Virginia

Tips for accessible travel

I’ve traveled by bus, plane and train over the years. I have to always be prepared for anything to go wrong, whether it’s my wheelchair or mode of transportation.

It’s important to make sure the bus is in working order beforehand. Make sure you let the bus company know the type of power chair. In my case, the chair cannot be folded and I need it to sit comfortably.

Be sure to locate mobility van rental companies. They may be closed after hours and on weekends, but some places have an after-hours phone line where you can talk to someone.

Check to see if there are wheelchair taxis or a Paratransit system nearby. If all else fails, call the local fire squad to see what they have available. It worked in my case!

I want to hear from you. How have you turned a travel situation around for the better? Also, post your videos on Facebook, Instagram and Twitter using #ThisIsHowI travel.

 

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‘Tis the season for health and happiness

Left: Aunt Kathy with Camille; Top: with Jeremiah; Bottom: with Kamden

Left: Aunt Kathy with Camille; Top: with Jeremiah; Bottom: with Kamden

I hope everyone is enjoying the holiday season! Christmas was fun visiting my grandmother and a host of cousins, aunts and uncles in Augusta, Georgia. Spending the holidays with family is what I value the most.

Watching my younger cousins opening their gifts is a fun experience. Their eyes light up as they rip off the wrapping paper and discover what’s inside! Seconds later, they’re ready to explore the next gift in their stack. It’s important not to take these moments for granted because it is these moments that keep us focused when times are tough and the road ahead may seem difficult.

Just a couple weeks ago, I had a minor surgery on the top of my right foot for a pressure sore  at the ankle. The tendon was exposed and caused a lot of spasms in my foot. Even before the pressure sore formed, my foot would spasm often and cause me to sweat, which is my body’s way of reacting to pain.

Before going to the doctor, I was wondering if there was a procedure that could be done to help my foot relax. Spasticity medicines, like Baclofen, weren’t helping, so I went to the same vascular surgeon who did the surgery on my left foot three years ago. Dr. Jacob Robison agreed that I may need to have the tendon removed, but he wanted to make sure there wasn’t any infection in the pressure sore. Fortunately, there was no infection and he was able to remove the tendon and close the pressure sore at the same time!

The surgery was a success and I haven’t had any spasms or severe sweating since the surgery!

Patient Advocacy

I share my medical experiences to let people know that you know your body better than anyone else. If you are having signs or symptoms that something isn’t right, be sure to let your doctors and medical professionals know. Dr. Robison is a great physician and emphasizes patient-centered care.

I have been to some medical facilities where the doctor didn’t say hello or acknowledge me before beginning to talk about my care. I’ve been around the medical community enough to know when I have or haven’t received good care. Plus, it doesn’t hurt having Dr. Mom in the house.

"Ethics Under the Knife" by Dr. Matt Koepke

“Ethics Under the Knife” by Dr. Matt Koepke

My friend, Dr. Matt Koepke, has recently written a book titled Ethics Under the Knife: Patient “Care” and Disservice in the Medical Industry. Matt is a 2016 Oral Maxillofacial Surgery graduate from MUSC and shares his experiences as a dental student. He emphasizes the importance great bedside manor for surgeons and other medical professionals.

Matt says, “I want medical professionals to understand how to act in front of patients, how to maintain professionalism in line with the Hippocratic Oath, and more importantly, how to have the courage to speak up for the defenseless patient without being intimidated by hospital hierarchy.”

Matt’s book is not only for medical professionals. I believe all patients should be aware of the type of care they’re receiving and become an integral part of the process.

Here’s to a Prosperous New Year!

Since my surgery, I’m feeling a lot better and I’m looking forward to a happy and healthy new year!

No matter what has happened this past year, you can overcome the adversities and make 2017 your best year yet!

happy-new-year-2017

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Accessibility at polling places on Election Day

We all know that we have the right to vote and to let our voices be heard on issues that are important. People with disabilities have the same rights as anyone else. Polling places must be accessible to everyone. Whether a person is visually impaired, deaf, or uses a wheelchair, accommodations are available to make the voting process easier.

Protection and Advocacy South Carolina and the DisAbility Voting Coalition produced videos for the 2012 election. The videos describe the many ways people with disabilities can vote. Each state has different guidelines, but the major voting options are absentee ballot by mail, absentee voting in person, curbside voting and lowered voting booths at your precinct.

Take a look at one of the videos featuring my friend Alicia Reagan. If you haven’t voted before today, make sure you cast your ballot!

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Weekend Recap: James Island Connector Run and Wheelchair Tennis

This past weekend was filled with several activities. The 18th Annual James Island Connector Run was a great success. The weather was nice and we had a great turnout of runners, walkers, cyclists and wheelchair riders.

Sarah Casteel was the only hand cyclist in the event and there were a few people with are blind who rode tandem bicycles with a sighted rider.

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Sarah Casteel riding a hand cycle.

Marka Danielle walked the bridge using her Purple Legs and Adam Gorlitsky walked the course in his exoskeleton.

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Marka Danielle (left) and Adam Gorlitsky (third from left) stand with City of Charleston Mayor John Tecklenburg and his wife, Sandy.

All proceeds from the race benefit students with physical disabilities through the Gavalas-Kolanko Foundation at six local colleges: College of Charleston, The Citadel, Charleston Southern University, Trident Technical College the Medical University of South Carolina and the Art Institute of Charleston.

Adaptive Expeditions Wheelchair Tennis Clinic

After the race, a group of us attended Adaptive Expeditions‘ inaugural wheelchair tennis clinic. The nonprofit organization provides recreational opportunities for people with disabilities. The session was led by avid tennis players Sarah Casteel and Jeff Kegler.

There was a mix of experience levels of the participants. A couple people didn’t need the instructional lessons, so they played a game on their own. The rest of us were newer to the sport.

Take a look at the video clips and watch us in action!

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Are you ready for the James Island Connector Run this Saturday?

jicr-poster-2016We’re counting down the days for the 18th annual Charleston James Island Connector Run! It is this Saturday, October 22 in Charleston, SC.

Proceeds from the race benefit the Gavalas Kolanko Foundation, which provides scholarships to students with disabilities. I was a recipient of the scholarship while I attended the College of Charleston. Now, I’m on the committee to award scholarships to students in the Charleston area.

To register for the James Island Connector Run, go to http://www.jicrun.com. Online registration ends Thursday at noon. You can register in person at Canon Park in downtown Charleston Friday afternoon from 1:00 p.m. – 7:00 p.m. or on race day beginning at 6:00 a.m.

Look forward to seeing you at the race!

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Waves of fun during Adaptive Recreation Weekend

Riding the waves with the support of Marina Forbus, Luke Sharp and Sarah Cline.

Riding the waves with the support of Marina Forbus, Luke Sharp and Sarah Cline.

This past weekend definitely has been filled with fun activities during Adaptive Recreation Weekend. The highlight of it all was going surfing on Folly Beach!

I could not have done it without the team of volunteers and my tandem rider, Luke Sharp, as he held me on the board. Luke has been asking me for several years to go surfing, so he was excited when I took the plunge.

It was one of the most amazing experiences being on the surf board and getting to ride the waves!

Even though I had some apprehension beforehand, my fears were washed away once I saw everyone else enjoying it. I’m looking forward to the next adventure!

 

Hula hooping thanks to Hooptitude at James Island County Park.

Hula hooping thanks to Kitcat Cunningham and Hooptitude at James Island County Park.

In addition to surfing, the Adaptive Recreation Expo was held Sunday afternoon at James Island County Park. It provided an opportunity for people to try archery, wall climbing, hula hooping and much more!

This weekend would not have been possible without Wheels to Surf team, Adaptive Expeditions and the Charleston County Park and Recreation Commission.

As we close out Spinal Cord Injury Awareness Month, I want to remind everyone that this disability does not stop us from enjoying life. We’ve got to get out there to show everyone what’s possible! Thank you all for your support as I share my story on this journey called life!

Take a look at the video from the South Carolina Spinal Cord Injury Association.

 

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Powering up with the Permobil F3

I'm sitting in my new Permobil F3

I’m sitting in my new Permobil F3

Out with the old and in with the new! I “traded in” my Permobil Street for the new Permobil F3.

The F3 is a front-wheel drive chair, which means the big tires are in the front and the smaller wheels are in the back. My old chair was the opposite, a rear-wheel drive system. The new style makes it easier to turn in narrow spaces like getting into my van and maneuvering at home.

Some of my favorite features of the F3 include:

  • 10 inches of seat elevation – I can raise the seat to reach things that are up high in the kitchen cabinets and can be at eye level with people who are standing
  • tilt and recline – I can lean back to relieve pressure on my hips and legs
  • An image of the joystick with the speedometer and clock

    An image of the joystick with the speedometer and clock

    articulating foot rests – I can have my feet and legs at different angles for stretching and to relieve pressure

  • speedometer– I can see how fast I’m going. The top speed is 6.1 miles per hour
  • clock – It’s neat to have the clock built in to the joystick system

The first three features are more than just accessories…they improve my quality of life. If I didn’t have those features, I would not be able to be as independent as I am. Tilt and recline are especially important for my health.

Since I’m in the chair all day, it’s important that I do pressure reliefs to prevent pressure sores on the skin. My seating system is also customized for me so that I’m sitting comfortably all day. You can read more about my Ride Designs customized seating system in a previous blog post.

Lastly, I wouldn’t be able to have my customized wheelchair if it weren’t for my seating specialist, Jill Monger, and the technicians at Pharmaceutical Health Care. This also wouldn’t be possible without coverage by my insurance company. While insurance doesn’t cover the complete cost of my chair, it pays for the majority of the cost. Our legislators need to need to realize the importance of these powerful machines!

I’m looking forward to living to the best of my abilities thanks to my Permobil F3!

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