Category: Medical

Medical

Traveling to Puerto Vallarta, Mexico

TwinsCoast2Coast

Tamara and Terry recently traveled to Puerto Vallarta, Mexico. Exploring international locations can be challenging (especially when you’re traveling with a 350 lb wheelchair!) but with some planning, MS doesn’t get in the way of taking wonderful trips.

How do I plan accessibility travel in advance with the airlines?

The twins have found that airlines are very accommodating with assistance on and off the plane, but it’s important to call the airline’s disability line to discuss your specific needs before you book.  Airlines do their best to help you have a comfortable traveling experience but planning is key to a successful trip.  

Alaska Airlines

Tamara had a very good experience flying Alaska Airlines to Mexico.  Here’s some of the resources she used:

Delta Airlines

Based in Atlanta, Terry often flies on Delta, as she did on this trip. While she has had mostly positive experiences, there has been some minimal damage to her wheelchairs on previous trips but Delta has worked with her to get them repaired.  Delta has several online resources to help with accessible travel:

Your rights 

Even with the best planning, sometimes things don’t go as planned.  As a disabled traveler, It’s important to understand your rights as established by the US Department of Transportation.  You can familiarize yourself with the Airline Passengers with Disabilities Bill of Rights 

Arrival in Mexico….the adventure continued

When they landed, both Tamara and Terry needed their wheelchairs to get to the terminal. Tamara is strong enough to sit in a normal wheelchair and was able to use the airline’s “meet and assist” service to get through passport control and to baggage claim.

Terry’s experience was different as her upper body is too weak to allow her to use a typical wheelchair. While the baggage handlers did their best to remove the chair from the cargo hold of their plane, Terry’s husband (Allen) ultimately needed to join them on the tarmac to help. He was able to provide directions on how to move the wheelchair out of the aircraft and then drove Terry’s wheelchair back to the gate. It’s just a reminder of the unexpected that can happen when you travel, so remember to pack your patience and a positive attitude!  

Return Flight

Given the challenges in getting Terry’s wheelchair off the plane when they arrived in Mexico, Stephen (Tamara’s husband) and Allen proactively went down to the tarmac to help the baggage handlers load the wheelchairs for their return flights. The good news is both the twins and their wheelchairs made it home safe and sound!

What are some tips for accessibility travel?

Plan ahead with your airline

  • Review the airline’s policy for disabled travelers before you book.
  • Keep a list of topics to share with the travel agent when booking your trip. While those details should be included with your reservation information, it’s helpful to keep a list for the gate agent, too.  
  • Ask your gate agent if the ground crew has any questions about how to load and unload your wheelchair or other device.  Large wheelchairs are heavier than luggage and other typical cargo, so they may need instructions on the power or battery.  
  • Most other assistive devices such as walkers and small, lightweight scooters can be left at the end of the jetway and be placed underneath the aircraft by the ground crew.

Plan ahead with your hotel/resort

  • Call the property ahead of time to let them know what you’ll need. For example, will you need a handicap-accessible room, a bathroom chair, or a ramp to a patio or porch?
  • Ask if there are handicap pathways and transportation throughout the property where you’ll be staying.  If not, you may want to find another place to stay! 

Where did Tamara and Terry stay in Mexico?

Tamara and Terry stayed at Vidanta in Nuevo Vallarta. The resort was beautiful and had multiple handicap-accessible walkways, restaurants and rooms. The resort staff was incredibly helpful and did everything they could to make it a special trip for the twins.

Tamara and Terry’s trip shows that with a bit of planning, it’s possible to travel almost anywhere.  Living with MS isn’t always easy, but it shouldn’t stop you from traveling with family and friends and exploring new destinations.  Stay positive, be patient and enjoy! Bon Voyage!

MS The Good, The Bad, The Funny

“The smiles are real, but so are the struggles of living with MS.”

TwinsCoast2Coast
Twins Coast 2 Coast

Tamara & Terry agree – “Multiple Sclerosis kicked our asses in 2022!”

As MS advocates who share our honest and authentic life experiences living with a chronic disease, we enjoy sharing the good, the bad and the funny of our MS journey. Before we look back at 2022, we’d first like to thank all of our social media followers, friends and family for all of your love and support through the year. 

Everyone reading this blog has challenges and a story to tell. These life events may take many different forms and the expression may be unique to the individual on his or her journey.Through TwinsCoast2Coast, we have invited people into our lives and journeys. It’s important to us that we be transparent and real to our audience. We have often thought of this journey as “The Good, The Bad and The Funny.”

Let’s start out with “The Good” of the past year.  We launched our Mirror Image Madness podcast and completed 16 podcasts. We had wonderful guests, discussing a wide variety of issues affecting individuals with MS.  This included interesting and exciting members of the MS community, health care professionals and national organizational movers and shakers.

Our blog featured posts on exciting new therapies and equipment to help support the individual with MS including the Lokomat exoskeleton, Vasper fitness technology and the newly FDA approved Cionic neural sleeve. 

We were involved with several high profile events. These included Nancy Davis’ “Race to Erase MS” Gala in Los Angeles.  The funds from this event support the “Center Without Walls” program, a network of the top MS research institutions across the country.  By working together as a team and sharing their findings, the hope is for these institutions to collectively find a way to eradicate MS.  

Terry attended the launch of Botanical Sciences, one of Georgia’s first medical cannabis companies, with founder Dr. Robin Fowler. Montel Williams, one of our podcasts guests was also in attendance. Botanical Sciences donated $5000 in honor of TwinsCoast2Coast to the National MS Society Georgia Chapter as recognition of the consulting she has done for the company..

Tamara led a West coast TwinsCoast2Coast event, partnering with AXR winery of Napa California for a wine tasting and fundraising event. One of the founders of the winery, Kelly Trevethan, was kind enough to attend and donate a percentage of proceeds to help support our nonprofit mission. 

Tamara and Terry were interviewed for The Motivator: MSAA’s national magazine (Summer/Fall 2022 edition.) The magazine explores issues affecting people with MS. The twins discussed a wide range of topics including the impact of aging with MS.

We also realized a childhood dream when we were asked to model in a campaign for EQL Threads. This adaptive wear clothing company provides sustainable fashion with hidden adaptive features that allow for comfort and mobility.

Unfortunately, 2022 included “The Bad.” Terry contracted a severe case of shingles which stimulated trigeminal neuralgia, a disorder that causes sudden and unbearable facial pain. She underwent gamma knife  surgery in order to treat the neuralgia. The episode was emotionally draining and scary for Terry and the entire family.

Tamara’s MS progressed to the point that she needed the daily use of a wheelchair. While a challenging transition, a wheelchair does offer more comfort and stability throughout the day.  Now that we both have wheelchairs, we realized we can be called “rolling ambassadors” for the MS cause!

And “The Funny?”  A good sense of humor is a necessity when dealing with the uncertainties that come from living with MS.  Along the way, we realized that MS also stands for Mighty Sisters!  Through it all, we are thankful for each other and continue to find joy and meaning in life.  

Wishing everyone a Happy New Year!!

Hugs, 

Tamara And Terry

Medical

Bionic Clothing?

TwinsCoast2Coast

The Cionic Neural Sleeve – The first bionic clothing for mobility impairment

How It Works

The Cionic Neural Sleeve analyzes, predicts, and augments a person’s movement. It uses a dense array of sensors to measure how the body is positioned and how individual muscles fire during movement, predicts intended movement by measuring the electrical signal from the brain, and then algorithms analyze this data in real time to determine optimal muscle activation patterns. The Neural Sleeve then delivers Functional Electrical Stimulation to sequence proper muscle firing for natural movement. It is an adaptive system that provides real-time augmentation and adjustment of the wearer’s movement, updating each time they take a step.

About CIONIC

CIONIC is committed to changing the lives of people with mobility differences by helping them move more independently. Motivated by his daughter’s journey with cerebral palsy, technology innovator Jeremiah Robison founded CIONIC in 2018. CIONIC builds bionic clothing that can analyze and augment human movement, enabling the body to move with more freedom and control than with crutches, walkers, or wheelchairs. CIONIC thoughtfully combines the diagnostic power of a gait lab with the therapeutic power of Functional Electrical Stimulation (FES) into a lightweight, durable garment that can be worn anywhere and work everywhere. CIONIC endeavors to exceed the expectations of human capability and change the lives of people with mobility differences and the lives of their loved ones by helping them move with greater confidence and independence. For more information, please visit cionic.com

Medical

Discovery Of New Cell May Be Key To Treating Incurable Neurological Diseases

TwinsCoast2Coast

COLUMBUS, Ohio – Research led by investigators at The Ohio State University Wexner Medical Center provides new hope for recovery from degenerative neurological diseases — such as ALS and multiple sclerosis — as well from as damage caused by traumatic brain and spine injuries and stroke. 

Using a mouse model, researchers at Ohio State and the University of Michigan discovered a new type of immune cell that not only rescues damaged nerve cells from death, but partially reverses nerve fiber damage. The research team also identified a human immune cell line, with similar characteristics, that promotes nervous system repair.

Study findings are published in the journal Nature Immunology.

“This immune cell subset secretes growth factors that enhance the survival of nerve cells following traumatic injury to the central nervous system. It stimulates severed nerve fibers to regrow in the central nervous system, which is really unprecedented,” said Dr. Benjamin Segal, professor and chair of the Department of Neurology at The Ohio State College of Medicine and co-director of the Ohio State Wexner Medical Center’s Neurological Institute.  “In the future, this line of research might ultimately lead to the development of novel cell based therapies that restore lost neurological functions across a range of conditions.”

The cell discovered by these researchers is a granulocyte, a type of white blood cell that has small granules. The most common granulocytes, neutrophils, normally help the body fight off infection. The unique cell type resembles an immature neutrophil but is distinctive in possessing neuroprotective and neuroregenerative properties. It drives central nervous system axon (nerve) regrowth in vivo, in part through the secretion of a cocktail of growth factors.

We found that this pro-regenerative neutrophil promotes repair in the optic nerve and spinal cord, demonstrating its relevance across CNS compartments and neuronal populations. A human cell line with characteristics of immature neutrophils also exhibited neuro-regenerative capacity, suggesting that our observations might be translatable to the clinic,” said first author Dr. Andrew Sas, an assistant professor and physician scientist in the Department of Neurology at Ohio State. 

Researchers demonstrated the therapeutic potency of the immature neutrophils subset by injecting them into mice with crush injury to the optic nerve or lacerated nerve fibers in the spinal cord. Mice injected with the new neutrophil subset, but not more typical mature neutrophils, grew new nerve fibers. 

“I treat patients who have permanent neurological deficits, and they have to deal with debilitating symptoms every day. The possibility of reversing those deficits and improving the quality of life of individuals with neurological disorders is very exciting,” said Segal, who’s also director of Ohio State’s Neuroscience Research Institute and the Stanley D. and Joan H. Ross Chair in Neuromodulation. “There’s so much that we’re learning at the bench that has yet to be translated to the clinic, I think there’s huge potential for future medical breakthroughs in our field.”

The next step is to harness this cell and expand it in a lab to enhance its healing effects. Researchers hope these cells can then be injected into patients to improve function and mobility and slow or stop progressive neurological decline.

“Our findings could ultimately lead to the development of novel immunotherapies that reverse central nervous damage and restore lost neurological function across a spectrum of diseases,” Sas said.  

Financial support for this research was provided by the National Eye Institute,, National Institutes of Health, the Wings of Life Foundation, and the Dr. Miriam and Sheldon G. Adelson Research Foundation.