I Wear Blue

Adaptive Kayaking in Metro DC, Virginia, Maryland

2013-03-17T22:45:00.002-04:00

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

2013-02-28T08:40:00.001-05:00

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)

2013-02-28T00:38:00.000-05:00

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

2012-11-22T23:13:00.001-05:00

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

2012-11-08T08:51:00.000-05:00

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.

DIY: Homemade Pressure Relief Pull-Up Bar

2012-10-18T08:59:00.000-04:00

Individuals with spinal cord injuries and paralysis must voluntarily shift their weight and perform pressure reliefs while sitting in their wheelchair to allow blood flow and oxygenation back in to the tissues, to prevent pressure ulcers and skin breakdown.

In my family, we have nicknamed pressure relief, "pansy" (like the flower!). When my mom has been distracted painting scarves or talking to friends, we can quietly call out "pansy" to remind her of the necessity of shifting her weight.

The most basic form of pressure relief over the past year has been my mom grabbing the arms of her wheelchair and pushing upwards. She holds this for 30 seconds and then sits back down. The problem she encountered was the stress placed on her wrists due to the right angle of her wrists during the pressure relief.

So- a solution was formed! A homemade pressure relief pull-up bar that allows the wrists to stay straight while lifting up off of the wheelchair! The bar can easily sit over any doorway and can easily be taken down when you have company or want to shut the door.

Here's how to build this yourself for $75 or less. Links to the items we purchased are attached, but feel free to build it however works best for you!

	Body Solid NB59 Adjustable Nylon Cable Handle 2 for $30 Amazon
	Truper Carabiner Hard Steel Spring Hooks, 3-1/8" You only need 4, but this one specific on was sold in a 12/pack: Roughly $10 Amazon
	Grizzly Fitness Double Loop Lifting Strap (Black, One Size) 2 straps for $15 Amazon
	Fitness Gear Door Gym $20 Dick's Sporting Goods (Look for a coupon)

Now my mom can pansy while doing a pull-up, and build strength at the same time!

If you have a DIY homemade invention that you would like to share with the SCI community, please post it here!

Politics and Disabilities

2012-10-17T22:29:00.001-04:00

"Nearly 1 in 5 people American's lives with a disability, and odds are, the rest of us love someone with one".

President Obama has created a video advocating for individuals with disabilities. He highlights values that are important to my mother and my family like, "courage", "dignity" and "independence". Obama does a commendable job in this video of demonstrating to our community that he is listening to our concerns and desires.

If you know of a video where Mitt Romney shows his support for people with disabilities, or if you have a resource demonstrating his advocacy efforts for people with disabilities, please share it here! I'd like to provide the full picture of how our leaders are supporting our loved ones.

DSC's Ya' Gotta Regatta Fundraiser - One Week Left!

2012-09-17T13:30:00.001-04:00

Every other week this past summer, my mother has participated in the Baltimore Downtown Sailing Center's Access-Ability Sailing program, which offers people with disabilities, MS, and limited mobility the opportunity to sail... for free!

The DSC has specially designed, 2-person, non-capsizable dinghies, the docks are equipped with accessible ramps and hoyer lifts, and DSC staff and a group of trained, enthusiastic volunteers, like my sister, Jen, and I, help ensure the safety of the 25+ participants in the Access-Ability Sailing program.

I've created a short video so that you can share the freedom and joy that my mother experiences when she gets to dock her wheelchair and immerse herself in sport and nature. We pull up Tiny Dancer on my iPhone and embrace the ride! (Click here to watch the video on Youtube or access below.)

Over the next few days, The DSC is trying to meet their fundraising goal of $5,000 to support the accessible sailing program and the Ya' Gotta Regatta, an end of the year race and party for the DSC staff, volunteers and participants. If we achieve this goal by next week, September 22nd, a matching donation of $2,500 will be granted to the accessible sailing program!

Please help us support this awesome program by making a donation to the DSC via my mom's DSC Fundraising Page, or purchase one of my mom's hand painted scarves, during the month of September, and a $20 donation will be made to the DSC in your name. (Visit my mom's store on Etsy, to pick out your awesome scarf and then check Jan Allmon's DSC Fundraising Page the next day to see your name and donation!)

Through the DSC Access-Ability Sailing program, we learn a lot about knots, boats and sailing, but most importantly, we learn that we all have something very special and unique to share with each other, and with this world.

Thank you to all of the fabulous people who have already donated and all of those who support us all year round!

Share Your Abilities

2012-09-05T23:44:00.003-04:00

After a year and a half of rehabilitation, physical therapy, FES therapy, aquatic therapy, daily exercise, driving lessons, sailing lessons, fabric painting lessons......(inhale)....... my mother has grown stronger and is focusing her attention on the hobbies and goals that she would like to accomplish with her abilities!

Over the past year and a half, a few things have remained constant:

My mother continues to show determination, optimism and hope.
An amazing network of friends and family continue to pray for my mother's recovery and offer their support and assistance.
I continue to look for ways to help families whose loved one is dealing with paralysis and/or has a spinal cord injury (SCI).

A question that my family gets asked a lot is, "how can we help?" Often, this is a hard thing to answer on the spot, because my mother is becoming more and more independent, she has a lot of the necessary equipment (manual wheelchair, electric wheelchair, standing machine, etc.) and our family has pulled together to make sure that she not only has the things she needs on a daily basis, but the things that she wants (flowers in the garden, lunch with her daughters, time with her grandchildren)!

Though, we may not have fully addressed this question in length before, thank you for patiently waiting for a sincere answer. There are so many ways that you can get involved and share your abilities!

Support Those with SCI by Generously Donating Your Time

Advocate for SCI and paralysis research by connecting with a group like Unite to Fight Paralysis.
Join Team Reeve. Run a race, bike a trail, swim the tides, host a bake sale, plan a party, organize any kind of event that interests you. Turn your passions into a mission to help others!
Volunteer your time locally with a group dedicated to improving the lives of those with disabilities. Go to volunteermatch.org and select your state and category, "disabilities".
Sign the online petition to urge congress to pass a National Transverse Myelitis Awareness Day.

Donations To Our Favorite Causes Are Also Appreciated!

I have come across a few very exciting, fundraising efforts recently that I would recommend you consider if you are looking to dedicate additional resources to a cause.

• Downtown Sailing Center (DSC)

My mother can not say enough good things about the Downtown Sailing Center in Baltimore, Maryland. She has been sailing with the DSC all summer through an accessibility program that is completely free to the participants. The staff and volunteers of the DSC do a fantastic job at assuring safety and enjoyment! WE LOVE DSC!

The DSC is trying to raise $5,000 by September 22, the date of the Ya' Gotta Regatta! Please help SUPPORT THIS CAUSE by donating to the DSC on Jan Allmon's DSC Fundraising Page.

• Shop for a Cause!

Buy a Jan Allmon Scarf on Etsy during the month of September and a $20 donation will be made in your name to our beloved Downtown Sailing Center! (If you buy more than one, a $20 donation will apply to each scarf purchased!)

Visit Jan Allmon's store on Etsy now to pick out your AWESOME scarf! Then, visit the Jan Allmon's DSC Fundraising Page the next day to see your name and donation!

• Buy a Groupon and Support the Life Through Motion Program

Now through Sunday, September 9th, buy a $10 Groupon that helps the International Center for Spinal Cord Injury at Kennedy Krieger Institute sponsor patients with spinal cord injuries in the Life Through Motion program.

My mother can attest to the quality of the rehabilitation program at Kennedy Krieger. Please donate now to help others who are facing the challenges of paralysis and/or a recent spinal cord injury.

Thank you all for reading, supporting my family and sharing in our cause! -Jaclyn Allmon

United Airlines Offers $50 Condolences to Person With Disability

2012-07-30T22:24:00.002-04:00

2 Weeks ago, I wrote a blog post, One Month and Not One Word from United Airlines, which details a disappointing United Airlines flight experience for my mother, Jan Allmon (paralyzed and in a wheelchair).

To summarize our flying experience, we had noted “wheelchair” and “immobile” during the checkout process on Orbitz. We then went on to United.com and marked the same information, also noting that we needed an aisle chair. Before the flight, I called the hotline for air travelers with disabilities, 1-800-778-4838, to make sure all bases were covered. When we checked in at the ticket counter the morning of our flight, I informed the lady that we had requested an aisle chair and asked her to verify that they would have one at the gate. Both women confirmed an aisle chair would be available.

Where United Airlines Failed:

United had a stair entry even though we had notified the airline of our special needs.
United boarded us last (against regulations).
United FORGOT TO CHECK OUR BOARDING PASSES until we were moments from boarding the plane, standing on the tarmac, waiting for the airline to order a last minute elevator lift.
The pilot encouraged us to use a wheelchair that we did not know how to use to get her off the plane upon arrival, because assistance was not available.
Personnel told us that the armrest did not raise, and therefore she was lifted over the armrest. Personnel were not trained (against regulations) and mid-flight we discovered that the flight did in fact raise.

United waited until the last day to legally respond to our complaint. The attached document details United's response.

United Airlines Response

In short, United's response:

Demonstrates complete denial of all staff inadequacies and procedures.
Blames my mother and I for not checking in at the gate after verifying with the bag check that the gate was prepared for our arrival. (PS- we tried but there were 20 people standing in line upset at United for their 5 hour delay to Chicago.)
Offers a $50 credit towards a future flight.

The $50 credit is an insult for every individual who has accessibility issues and to any friend or family member who knows that things should be more just than this experience.

Please share this article if you are OUTRAGED... or at least disappointed in United Airlines!!
THANKS~
Jaclyn

One Month and Not One Word from United Airlines

2012-07-18T08:56:00.000-04:00

My mother, Jan Allmon, became paralyzed at T7 in March of 2011 from a neurological condition known as transverse myelitis. Until our vacation to Vermont in June, 2012 , she had yet to experience flying with accessibility issues. To prepare for the flight, we did our research and contacted the appropriate parties to assure that we were just as informed about our flight as the airline was with our additional needs.

Pre-Flight Preparation:

When we purchased our United Airline tickets on Orbitz.com, we noted “Wheelchair”, “immobile” during the checkout process. We then went on to United.com and marked the same information, also noting that we needed an aisle chair.

Before the flight, I called the hotline for air travelers with disabilities, 1-800-778-4838, to make sure all bases were covered. They assured me that if I verified at the time of bag check that there would be an aisle chair and left enough time for security check, that the process would be seamless. They said my mother would board first via a mechanical lift or ramp.

You would think that the Air Carrier Access Act, which prohibits discrimination in air transportation by air carriers against qualified individuals with physical or mental impairments, would protect my mother from harm/embarrassment/hassle, but unfortunately that was not the case, and the flying experience was less than "seamless" for someone with accessibility issues.

Outbound Flight (IAD to BTV June 15, United 5969s):

When we checked in at the ticket counter the morning of our flight, I informed the lady that we had requested an aisle chair and asked her to verify that they would have one at the gate. She got on the phone and 10 minutes later, she had coordinated an aisle chair.

At the gate, there was no aisle chair. The flight was then delayed 40 minutes. 5 minutes before the delayed boarding, a gentleman brought us an aisle chair. We were escorted outside and onto the plane via a ramp. The 3 men assisting us told us that the armrest could not go up, so my mother was lifted over the armrest into the chair, and in doing so, bumped her head on the overhead bag storage. Mid flight, we figured out that the armrest did in fact raise.

On our flight from Dulles Airport to Burlington, Vermont on June 15th, United Airlines failed to follow Subpart F – Seating Accommodations 382.81 of the Air Carriers Access Act, Nondiscrimination on the Basis of Disability in Air Travel.

382.81 indicates that for a passenger who uses an aisle chair to access the aircraft and who cannot readily transfer over a fixed aisle armrest, you must provide a seat in a row with a movable aisle armrest. You must ensure that your personnel are trained in the location and proper use of movable aisle armrests, including appropriate transfer techniques.

During our flight, personnel were not trained in the proper use of movable aisle armrests, which provided for an inappropriate transfer technique.

An aisle chair was provided upon landing in Burlington, but there was no one to assist. After 10 minutes of waiting on the plane after everyone else had gotten off, the pilot informed us that even though he had notified the airport 30 minutes into the flight that assistance would be needed, no one was yet available to help us get off the plane. The pilot encouraged us to use the aisle chair ourselves to get my mother off the plane, even though we had no idea how to operate the chair, buckles or locks.

Return Flight (BTV to IAD June 18, United 3921s):

The lady checking us in confirmed via computer that an aisle chair was arranged and would be available at the gate.

Upon arrival at the gate, no aisle chair was available. Gate attendants were busy helping delayed travelers get on new flights to Chicago.

I was startled when boarding to DC began for those with special needs and children. We went up to the counter and asked for the aisle chair. The attendant was frantic as she realized that a.) there was no aisle chair, and b.) the plane only had stairs for boarding. A minute later she began boarding all rows.

10 minutes later, we were escorted outside to the tarmac to wait for an aisle chair, a mechanical lift and assistance. My mother felt bad for delaying all of the other travelers who now were boarded on the plane.

The airline had forgotten to check our boarding passes, and did so after 5 minutes of standing next to the aircraft on the tarmac.

The gentleman that eventually helped my mother transfer into an aisle chair was very kind, but he informed her once on the elevator lift, that he didn’t know how to operate the mechanical lift.

Once on the plane, my mother was moved to her seat in an aisle chair and transferred into her seat while an entire plane full of people watched her every move. This was incredibly uncomfortable for her.

United Airlines failed to follow Subpart G, Boarding, Deplaning, and Connecting Assistance, 382.93 of the Air Carriers Access Act, Nondiscrimination on the Basis of Disability in Air Travel.

382.93 indicates that as a carrier, you must offer preboarding to passengers with a disability who self-identify at the gate as needing additional time or assistance to board, stow accessibility equipment, or be seated.

My mother was not offered pre-boarding to the aircraft. In fact she boarded LAST.

Upon arrival at Dulles, she was quickly and kindly escorted off the plane last. She took comfort in the trip being over.

Conclusion:

My biggest disappointment is that this was an opportunity for my mother to see that her disability is not a restriction. However, through this experience, she felt embarrassed, frustrated and forgotten.

My mother didn’t just become one less customer for United Airlines, but ONE LESS CUSTOMER FOR ALL AIR TRAVEL.

I was confident going into this trip based on the traveler information that I had provided and the accessibility information that was provided to me. But, United Airlines had an incredible failure of communication with the gate personnel, which demonstrates a real lack of consideration for their customers and professionalism as a business.

Their staff’s kindness is United’s only redeeming factor. Each employee tried their hardest to make up for the fact that United Airlines policies, procedure and systems had utterly failed.

I emailed United Airlines about our experience on June 19th, and have received no response from United Airlines.

File Your Air Travel Complaints:

Filing a complaint with the Department of Transportation is crucial in improving the customer experience for those with accessibility issues. If you have had a similar experience, please provide the procedural failures to the DOT.

I filed a complaint against United Airlines and received the following automated message from the DOT:

Thank you for contacting the Department of Transportation's Aviation Consumer Protection Division. This office deals with airline service complaints. Issues regarding airline and aircraft safety, emergency exit seating, low-flying aircraft, pilot licensing and related issues should be sent to the Federal Aviation Administration (FAA); contact information will be found at http://www.faa.gov/contact. Security issues, including passenger screening, the "no-fly" list and the baggage screening process are handled by the Department of Homeland Security's Transportation Security Administration (TSA) at TSA-ContactCenter@dhs.gov.

If your message was a question regarding service issues other than safety or security, answers to most aviation consumer protection questions, including the rights of passengers, can be found in the information available on our website, particularly in the publication "Fly-Rights". To obtain electronic versions of a number of air travel consumer publications, go to http://airconsumer.ost.dot.gov/ and click "Travel Tips & Publications."

Although we do not mediate individual complaints, if your complaint concerns airline service we will enter it in our computerized industry monitoring system, which serves as a basis for rulemaking, legislation and research. Complaints are also charged to the company in question in our monthly complaint report, which is distributed to the industry and made available to the news media and the general public so that both consumers and air travel companies can compare the complaint records of individual airlines and tour operators. Complaints are also routinely reviewed to determine the extent to which carriers are in compliance with our regulations. We also use these complaints to track trends or spot areas of concern, which we feel may warrant further action in the future.

Thank you for taking the time to contact us.

Sincerely,
Aviation Consumer Protection Division (DOT ACPD) U.S. Department of Transportation

Happy Birthday Mom! Keep Smiling!!

2012-07-17T23:43:00.000-04:00

Mom, you continue to inspire us each and every year with your optimism, motivation and love for life. I hope this year is a wonderful one. Happy Birthday.

Push Girls Shows Real Life of People in Wheelchairs

2012-06-06T09:01:00.000-04:00

Bold, real, mesmerizing... Push Girls, a new documentary/realisty series on the Sundance TV Channel, has the potential to change perceptions of people in wheelchairs.

"It's absolutely true that one of the things that makes Push Girls interesting is that it offers a view of what their lives are like that acknowledges that they have to worry about things other people don't have to worry about, but that doesn't contain even a whiff of pity and doesn't try to make them heroes.

"They seem to have the right balance here of stuff that is about the wheelchairs, which is interesting and helpful to share with an audience, and stuff that isn't about the wheelchairs, which is important to avoiding making the women seem precious or one-dimensional. It's a solid show of just the kind it's nice to see as networks explore where they can go with reality programming." (NPR, 'Push Girls': A Fresh Take On Women Riding On '26-Inch Rims')

Tune in to the Push Girls Monday's at 10pm!

The Best Mom on Wheels

2012-05-04T07:43:00.002-04:00

Christopher Reeve Foundation has announced the 10 finalists for the 2012 Best Mom on Wheels competition. All women are so very deserving of this award. Please take a moment to view the finalists and VOTE for the story that inspires you the most.

For me, my vote goes to my mom, Jan Allmon, a finalist in the competition!! Way to go mom. You are the BEST!!! (Watch a video about my mom).

Accessible Sailing Season Begins

2012-04-14T09:56:00.002-04:00

Last weekend, my mom participated in the first Accessible Saturday of the season at the Downtown Sailing Center in Baltimore, Maryland. Accessible Saturdays at the DSC is a volunteer-run program that allows individuals with disabilities to learn to sail in non-capsizable access dinghies.

With the assistance of DSC staff, returning volunteers (Brian – below) and a few awesome physical therapist volunteers (my sister, Jen, smiling in the picture above), my mother was safe and secure as she transferred into the boat using a manual hoyer lift.

With Peter as my mom's experienced sailing buddy, my mom and her new teacher set sail. (watch the video on Youtube).

All participants enjoyed a windy Saturday learning the ins-and-outs of sailing!

My sister jumped in the powerboat with Pat and Julia to take pictures of my mom and Peter sailing, me learning to become a sailing buddy, and the other participants enjoying their adventure. She claimed she was the paparazzi!!

After an amazing day, my mother and sister and I headed to the Historic Savage Mill for a great lunch to cheers my mom's accomplishment!

Last weekend, was truly a great start to what will be an awesome season! I would like to thank Lynn and all of those who work or volunteer at the DSC for helping to make this such a spectacular experience for my mother, and my family!

Volunteer with the DSC

Volunteers allow the DSC to offer the joy of sailing at little or no cost to sailors of all ages with disabilities. You do not need to know how to sail to volunteer. Contact Lynn Handy at 410.727.0722 if you would like to get involved.

Donate to the DSC

"The Downtown Sailing Center provides quality education and life enriching programs that promote self-esteem and teamwork through the joy of sailing. The Downtown Sailing Center is committed to promoting an environment of inclusiveness and accessibility, especially to youth, persons with disabilities, and those with limited opportunity."

Your donations make a difference! Donate Now.

Accessible Sailing Season Begins This Saturday!

2012-04-05T18:49:00.001-04:00

This weekend is the first weekend that my mom will set sail for a day of adventure on the water as part of the Accessible Sailing program at the Downtown Sailing Center in Baltimore, MD.

I couldn't be more excited to be there right by her side, as an accessibility volunteer! The following are photos from the Downtown Sailing Center Transfer Training Day in March. I'll be posting photos this weekend too so check back to see how it all goes!

Pass a National Transverse Myelitis Awareness Day

2012-03-14T08:02:00.001-04:00

Hello Friends,
It has been one year since Jan's onset of transverse myelitis. While there has been no change in her condition, she is in good spirits. She is designing and painting scarves, swimming, exercising on an Easy Stand Glider (thanks to generous donations) and enjoying our grand kids.

There is a movement to raise awareness of transverse myelitis at the national level. Supporting this petition is the first step in directing resources to understand it and to assist those who are living with TM and those who will face TM in the future. By signing the petition you will be supporting Jan!

Thanks for all your love and support.
Jim Allmon

55 more signatures to go!~

We Love You and We Wear Blue!

2012-03-04T12:20:00.001-05:00

This weekend marks one year since the onset of transverse myelitis. Our entire family and all of my family's friends have been such an incredible support system for my mother, and each of us. I'd like to take the opportunity to say thank you to everyone for their encouragement and generosity.

To my amazing mother- the Griswolds said it best,

We admire your strength throughout the past year. We are all here for you & continue to keep you in our prayers. We Love You & We Wear Blue!

7X57YEE3YSG2

One Year with Transverse Myelitis - Words of Wisdom

2012-03-04T12:20:00.000-05:00

Jan Allmon

Two weeks ago, I asked my mother to share her good, bad and ugly experience with transverse myelitis over the past year. We hope that the following incredibly Honest interview provides a glimpse into the life of one individual recovering from, and coping with, transverse myelitis.

How often do you reflect on the past year?

Just about every day I wonder what I could have done differently to have prevented my immune system from being compromised. Because there were so many life changes in the year before the onset of TM, including selling a house, selling a business, moving and trying to find a new house and start new business, I realize now that the body can only take so much stress. I was not getting enough vitamin C And D either, because of my random eating habits. But I did try to take care of my body by exercising each day. I find it ironic that the thing I most enjoyed, which was walking three miles each morning, is the very thing I'm no longer able to do. Pushing myself in a wheelchair is just not the same psychologically or physically. I still struggle with accepting the fact that I can't walk. Not a day goes by that I don't ask 'why?'.

What's the hardest part of your day?

The hardest part of my day is finding comfort from pain and pressure. I can only sit for about two hours before I need to stretch out on my stomach or elevate my legs. At the point of my paralysis, pain radiates around to my abdomen and gets worse as my muscles get more tired during the day.

The best ways to cope with pain? What works, what doesn't?

I cope with the pain by taking medication, which helps somewhat, but I find greater relief by throwing myself into an activity which takes my mind off my discomfort. Heat packs also help me, especially when I'm reclining. Exercising helps the most. Swimming allows me to move and stretch without pain. My weightlessness in the water helps me feel relaxed and mobile again. Swimming is one of my favorite ways to exercise and be pain free for awhile. Riding a hand bike is also great exercise. It moves my legs and gently stretches my abdominal muscles. Stretching is just as important to me as my other rehabilitation exercises like weight lifting and trunk balance routines.

How has your relationship been effected?

My relationship with my husband has been effected both positively and negatively. He has certainly stepped up to the plate to take care of my needs. I respect the fact that he tries his best to make life more comfortable for me, and rarely complains. He has learned to do a lot more in the way of household chores and seems okay with the additional responsibilities. Being a caregiver as well as provider seems to have given him more confidence in himself. Alternately, my own sense of self worth and self esteem has suffered. I am still prone to have bouts of self pity and struggle with mood swings. I want to be proactive and positive, but sometimes it's difficult. I know I've put a strain on our relationship. I guess coping with new situations, though, will make us stronger in the long run. I often feel guilty for making the family that I love have to cope with my problems. But my husband, my daughters, my mother, my relatives and friends have been my strength and my lifeline this year. They have helped me in so many ways and I know we have all grown closer as a result.

Many of the things my husband and I enjoyed doing together in our leisure time have been put on hold. Things like taking long trips, bike riding, hiking, or just sitting through a long movie seem impossible now. But I'm an optimist, and I know that I will find a way to do these things again in a modified way. I'm also sure that we will find new hobbies and experiences to share.

What scares you the most? Have you, as a person, spiritually, mentally, psychologically changed?

What scares me the most is that I will give up my dreams. I worry about not being a productive part of society. The question of my life's purpose has become more significant to me. There must be a reason for this life-changing situation, and I find myself questioning what it is. It scares me to think that I'm wasting time. I feel that life is precious, and I don't want to waste it.

What are the most useful tools/equipment/accessories that help you day-to-day?

The most useful piece of equipment is of course my wheelchair. I use it all day long to get me around the house. It's become a part of life that I couldn't do without. Just as important to me in my daily routine is my Easy Stand glider by Evolve. It allows me to sand up and exercise at the same time. Bearing weight on my legs is good for the bones and helps prevent osteoporosis. Cycling with my arms and gliding provides cardiovascular activity and reminds my legs what they were built for. The stander exercises my hip flexor muscles as well. I had to purchase this piece of equipment because insurance would not cover it, but it's been worth every penny and made less financially burdensome by generous donations from friends and family.

What equipment do you wish you had, but because of cost or space or the fact that it doesn't exist, you don't have?

New equipment that I wish I had is actually a wheelchair accessible van. I would love to have the independence that driving affords, but retrofitting a van is very costly. I would love to get a license to drive again using paraplegic equipment, but only if I had a car that I could get in and out of independently via a ramp. The van would be a great solution. I could take longer trips, too, by being able to stretch out and lay down when I needed to. This vehicle is on my wish list.

What changed most over the past year?

The status quo of life as usual was turned upside down. My day was no longer 9 to 5 and relegated towards making an income and doing chores. The focus of my life turned to friends, family and medical professionals who gave me strength, hope, and love. I've learned to appreciate their time and energy, and I hope to be a better person in return.

What has surprised you over the last year?

I've learned that I'm not alone with my disability. It surprised me to see how many people in my life came forward to offer their support. Even people I've never met before were more than willing to share their experiences with TM through social media networks. My own daughters spent endless hours developing blogs to reach out to other paraplegics on my behalf. I believe that in some mysterious way I've actually been blessed this past year. I've been forced to re-evaluate my goals and sense of self. The body has it's limitations, but the spirit doesn't. I guess I've become a little more spiritual over the past year, and I think I'm happier because of it.

What are your words of advice for someone newly diagnosed with TM?

I would tell any person who is newly diagnosed with TM to look forward and have faith in themselves and those around them. Life has a way of propelling us toward being all that we can be (I think that phrase has already been taken by the Marines) but so true!

Over the past year, what are the most notable moments that stand out the most?

I've learned that people can laugh with you as well as cry. Humor is a strong anecdote to adversity. I'll never forget the time our good friends from out of state came to visit and we tried transferring me to their van that had quite a rise. I propelled myself sideways on my slideboard only to be sprawed halfway in and halfway out. They pushed and pulled me like a whale on the beach until I was finally on board. We laughed until the tears came. We also laughed at the rocket slide back down. I can still here them calling 'Wheeeee!' That same weekend our friends also watched me get caught in the middle of a crosswalk with a battery operated scooter that ran out of juice. We put the drive in manual and they pushed me to the curb, and yes, there were cars patiently waiting and I hope sympathizing.

Whats next?

I don't know... I'd like another cup of coffee... or a bloody mary!

-Jan Allmon

My Mom Transforms a Yellow Spot into the Sun

2012-02-29T22:19:00.000-05:00

There are painters who transform the sun into a yellow spot, but there are others who, thanks to their art and intelligence, transform a yellow spot into the sun. - Pablo Picasso

My mom has been transforming "yellow spots into the sun" for 25+ years! As an artist and gallery owner in Woodstock, VT, Williamsburg, VA and Worthington, Ohio, my mom has touched many lives with color and beauty. While she focused on oil paintings in the past, painting large canvases at an easel from a sitting position has become more and more of a struggle... However, if you know my mom at all, you know that she is inventive, creative and resourceful, and doesn't let anything hold her back!

Over the past year, I have been so proud of my mom's drive to teach herself how to perfect the creation of handmade silk scarves as a new medium for her art. Creating each scarf is a very long process of washing, drying, stretching, sketching, painting, steaming, washing, drying, ironing... but she loves every minute of it! And she's really good at it! View photos of my mom painting silk scarves.

While, I believe I have the best scarf, created by my mother as a gift to me on Valentine's Day (the scarf features the Royal Blue Ribbon which has become such a powerful symbol in my life), there are more of Jan Allmon's scarves on Etsy if you would like one of your own!

I know there are many artists who use music and art as therapy, and I would love to hear more about your experiences. Please feel free to share your stories, artwork, music and websites below so that we can all marvel at your accomplishments!

February 29 is International Rare Disease Day

2012-02-29T08:43:00.000-05:00

Patient organizations around the world are organizing awareness-raising activities today around the slogan "Rare but strong together". February 29th is International Rare Disease Day.

Raise and hold hands today, February 29 and show your Solidarity with rare disease patients around the world. Raise your hands for those with transverse myelitis. Then, upload your photo on the Rare Disease Day web site.

Aquatic Therapy Rehabilitation

2012-02-24T09:38:00.000-05:00

My mom has worked so hard in her rehabilitation this past year (since onset of transverse myelitis in March 2011). Aquatic therapy is helping her gain muscle strength and tone, reduce stress, increase endurance and increase range of motion and flexibility.

Read more about the benefits of swimming.

Acess-Ability Resources for DC Metro Community

2012-01-18T20:13:00.003-05:00

I am super excited to have just come across this resource:

The Downtown Sailing Center (DSC) in Baltimore, MD has sailboats for all physical abilities. The DSC's docks are equipped with accessible ramps and Hoyer lifts. The DSC also has an accessible sailboat known as the Sonar 23 keelboat (used by the U.S. Paralympic Sailing Team).

I am really looking forward to helping my mom get involved in the Access-Ability Sailing program, which offers individuals with disabilities the opportunity to sail on the weekends, April-August. At the end of the summer, my mom and our family may even get to participate in the Ya'Gotta Regatta!

Volunteer buddy sailors, assistants and dock support allow the DSC to offer the opportunity to sail at little or no cost to sailors with disabilities. They are accepting volunteers and provide training to ensure that all the participants enjoy themselves and sail safely. Register to become a volunteer member. (My application has been submitted and I am eager to volunteer.)

A few other resources to note:

If you have other DC Metro access-ability resources, please share them here.

Unite 2 Fight Paralysis: SPEAK OUT

2012-01-06T17:01:00.000-05:00

In October 2011, I advocated for support of the Regenerative Medicine Promotions Act of 2011 (HR 1862) during Unite 2 Fight Paralysis's Advocacy day, which was part of Working 2 Walk 2011. It was empowering and worth every minute.

I encourage you to attend Working 2 Walk 2012, October 31 - November 3, in Irvine, California so that you too can learn, advocate and SPEAK OUT.

Photo Montage 2011 from Unite 2 Fight Paralysis.

2011 Working2Walk Photos on Facebook
Photos from my day on Capitol Hill during Working 2 Walk 2011 Advocacy Day

Paraplegic Sports & Activities

2012-01-04T22:21:00.001-05:00

Since the onset of transverse myelitis (TM) in March of 2011, my family has followed many inspiring stories of individuals with physical disabilities who learn to find modified ways to participate in the activities that they enjoy.

There are two activities that my mom craves.

One, my mom misses hiking more than anything. She misses being enveloped by deep woods and reaching the top of mountain peaks to be rewarded by breathtaking scenes of nature. Our modified attempt to bring her back into the woods was a New Years Eve day nature stroll at Silver Lake in Gainesville, VA. It was really a beautiful, lovely day.

The second activity that my mom loves is kayaking. Last summer was a busy time for our whole family, as we learned to better understand TM and as my mother worked to regain balance and strength in rehab. But... This coming summer, we will learn to kayak! In order to do so, we will need to modify the kayak with protection, learn how to balance, flip over in case of emergency, and transfer to and from the kayak.

Here are a few videos of paraplegic kayakers as they learn the ins and outs of the sport.

If you have any advice for us as we start to learn to kayak, please contact us! If you are participating in sports and activities that people thought were seemingly impossible--- keep up the good work!!!!