Adaptive Kayaking in Metro DC, Virginia, Maryland

When my mom became paralyzed at T7 in March 2011, she fabricated a long list of things she thought that she would never do again. But over the last 2 years, she has overcome many mental and physical obstacles by challenging herself to re-learn how to enjoy the hobbies and freedoms that she once did – just modified. Among some of her new endeavors are participation in an adaptive ski program through Baltimore Adapted Recreation and Sports (BARS), sailing with the Baltimore Downtown Sailing Center (DSC), taking a rehabilitative driver training and getting her driver's license, and most recently KAYAKING!

Today, my mom, dad and I went to the David Taylor Model Basin in Carderock, Maryland to meet the lovely staff, volunteers and participants of Team River Runner (TRR), a non-profit organization that provides active duty servicemembers, veterans and people with physical disabilities the "opportunity to find health, healing, and new challenges through whitewater boating and other paddling sports."

The staff at Team River Runner (TRR) welcomed my mom with open arms and quickly made her feel at ease. They assisted her with a safe transfer, and glided her into the water in an adapted kayak with outriggers, designed to provide added stability. The TRR team taught her proper paddling techniques and balancing tips, and by the end of her session, she had kayaked 1.3 miles! It was an awesome day and she's motivated to build up her strength and skills over the next few weeks so that she can head outdoors with TRR in late April!

Participate

The metro DC and Baltimore area have some amazing non-profit organizations committed to serving people with disabilities. If you would like to participate in a program offered by TRR, BARS or DSC, please contact them directly or contact my family if you have any questions. We are huge supporters of each of of these organizations, and we would love to see you at their next events!

Find your local Team River Runner (TRR) chapter if you'd like to kayak with this great group! They are accepting new paddlers!

Rare Disease Day | Bringing Awareness to Transverse Myelitis

Today, February 28th, is Rare Disease Day, and a much needed opportunity to host events and share stories that bring awareness to lives touched by rare disease. This year's awareness-raising activities converge around the slogan “Rare Disorders without Borders”.

Bringing Awareness to Transverse Myelitis (TM)

Transverse myelitis is a rare inflammatory disease causing injury to the spinal cord. My mom, Jan, experienced the onset of this neuro-immunologic disorder in March of 2011, and became paralyzed from the waist down (T7). While she has done an amazing job rebuilding her life and rebuilding her strength, she has yet to recover any sensation or motor use of her legs.

Epidemiology

TM has a conservatively estimated incidence of between 1 and 8 new cases per million per year, or approximately 1400 new cases each year. Although this disease affects people of all ages, with a range of six months to 88 years, there are bimodal peaks between the ages of 10 to 19 years and 30 to 39 years.  In addition, approximately 25% of cases are in children. There is no gender or familial association with TM.  In 75-90% of cases TM is monophasic, yet a small percentage experience recurrent disease especially if there is a predisposing underlying illness. -Myelitis.org

Jan Allmon | Physical Therapy Rehabilitation at Kennedy Krieger Institute

Particpate in the conversation on Rare Disease Day’s Social Media

My mom is doing such an amazing job keeping her spirits high and working hard to keep her body strong, despite transverse myelitis. Please take a moment to recognize her and learn about others who are suffering from a rare disease. 

facebook.com/rarediseaseday ‘Like’ the RDD Facebook page, view our timeline and participate in the conversation on Rare Disease Day



twitter.com/rarediseaseday Follow Rare Disease Day on Twitter (@rarediseaseday). Re-tweet us and use the hashtag #raredisease



youtube.com/rarediseaseday Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel via rarediseaseday.org



flickr.com/photos/rarediseaseday Upload your photo on to the Rare Disease Day Photo Wall and add a comment in your own language

Adaptive Skiing w/ Baltimore Adapted Recreation & Sports (BARS)

This past weekend my mom, Jan, and I headed north to Liberty Mountain for the 2013 Ski Mash hosted by Baltimore Adapted Recreation and Sports (BARS). This 2-day adaptive ski program was a wonderful way for individuals to enjoy adapted ski lessons, in a safe, encouraging environment.

My mom thought she'd never ski again after the onset of transverse myelitis, which is why conquering this mountain and achieving something that she didn't think was possible, was so cool.

With the support of David, an adaptive ski instructor, and Heidi, a therapist at Kennedy Krieger Institute, my mom ventured out excitedly onto the trails to learn how to ski... and she did a great job!


View more photos from the event and watch videos from the Ski Mash!

• Jan getting on chairlift ~ first trip up
• Jan skiing ~ second to last run
• Amazing adaptive skier ~ something to work up to

Thank you to BARS and all of the 2013 SKI MASH Sponsors who helped make this event possible. My mother and I really enjoyed it!

GOLD LEVEL
Disabled Sports USA
Kernan Orthopaedics and Rehabilitation

SILVER LEVEL
Tobii Assistive Technology Devices & Solutions
MedStar National Rehabilitation Hospital
Coloplast

BRONZE LEVEL
Kennedy Krieger Institute
Uromed
Dankmeyer
James Pharmacy
Quantum Rehab

Thankful for Hugs

Today is Thanksgiving Day and there are a thousand and one things to be grateful for. At the top of my list- I'm thankful for health, family and hugs from my chickadee. Happy Thanksgiving!

The EasyStand Glider

Standing glider during outpatient physical therapy
program at Kennedy Krieger Institute.

Active standing provides lower body range of motion and upper body strengthening. The EasyStand Glider allows individuals to move the handles with their arms which creates a reciprocal movement in the legs.

My mom really enjoys the standing glider, which allows her to stand and work on trunk balance while performing reciprocal motions with the upper and lower extremities. The standing glider promotes weight bearing through the lower extremities (to prevent bone loss), stretches lower extremity musculature, and improves cardiovascular endurance.

Her physical therapist and doctor initiated the ordering a standing glider for my mom, but it was denied numerous times. Her doctor wrote appeal letters urging the insurance company to cover this equipment due to medical necessity for long term home use, but it was denied. My mother also wrote an appeal letter for the Easy Stand Glider, but it was denied. While there were numerous attempts to demonstrate the medical justification, the insurance company refused to cover this invaluable piece of equipment.

With the support of our friends and family, my mother was able to purchase the Easy Stand Glider for her home and uses it for 45 minutes every day. We are so grateful.