Adapt. Adjust. Accept.

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Highlights from Adaptive Devices Ask the Experts Videocast

“My devices enable me to attain self-sufficiency and independence” – Victor Sheronas

The recovery process from GBS, CIDP, MMN and other variants can be a long, even sometimes life-long process. When patients leave the hospital, they are transitioning into a space that in most cases is not adapted to their new needs. In life, we need to make adjustments to the changes we face, but it’s not always easy, and can be especially difficult when we don’t know which path is best.

Today, there are so many options for medical and assisted devices to help people with GBS, CIDP, and variants, live a more comfortable and adjusted lifestyle. The issue lies within finding what works best for you. It’s important to find adaptive equipment that best fits your needs to help you get back to your life as best you can. 

On Jul 29, 2021 the GBS|CIDP Foundation International community release Episode 12 of Ask the Experts Videocast with a panel of patients and experts in Adaptive Devices. Members, volunteers, and staff gathered to talk about the transition from rehab to home life. The discussion highlighted typical issues that patients face when first diagnosed and first transitioning back to their day to day, new normal.

Our panel discussed their diagnosis, experience in the hospital, their recovery period in rehab and what patients should consider before leaving for home after rehabilitation. They also discussed what types of physical exercises work best for each of them during recovery, the benefits of swimming as an exercise during recovery and how important it is to have an exercise routine after leaving rehab. 

Victor Sheronas, a longtime member and volunteer, led us off with a brief story of his diagnosis before elaborating on some of his favorite adaptive devices, and what he uses each device for. Victor’s most used adaptive device would probably be his Rollator by Vive. Victor uses his Rollator to get around outside and inside, it’s foldable so it can be taken on planes, and it’s fairly light at about 15 pounds. He discussed how it can sometimes be a struggle to go up the stairs and the importance of a handrail especially for the very top of the stairs. Some of Victor’s favorite exercises are walking in the pool, jumping jacks, and short walks with his cane.

Bob Burton, our Newburgh New York Volunteer, described his release from the hospital and his recovery process at Helen Hayes Rehabilitation Center. During rehab Bob learned how to walk in a swimming pool and spent the night in a “rehab apartment” with his spouse. Bob is now a mentor at the rehab. Some of Bob’s tips include using a travel wheelchair around your home instead of a regular wheelchair, since most regular wheelchairs won’t fit around your home, through the doorways. Bob uses the three A’s when talking about GBS: Adapt, Adjust, Accept. He also encouraged everyone to “not be ashamed to ask for help.” The panelists discussed how to ask for help when you need it and how to politely refuse help when it is not necessary.

Kelly McCoy is the Associate Director of Engagement here at GBS|CIDP Foundation International. Kelly was diagnosed with CIDP at age 28 and experienced complete paralysis. Kelly introduced herself and discussed her experience living with CIDP. She brought some great examples of adaptive devices that can be used to help you live your life more independently. Kelly went into great detail about how each device can be used for specific circumstances. (included below)

The group discussed how important it is to be thankful to their caregivers and how to set comfortable boundaries within their friends and family. It is important to set boundaries around when to help you and when to give you space.

“When people offer their help it’s always important to remember that it’s done from a good place. People are typically nervous or uncomfortable, so it’s good to put them at peace by smiling and thanking them.” -Bob Shea

Bob Shea has been a long time member of GBS|CIDP Foundation International and is a part of our patient community. One week after his GBS diagnosis, Bob was fully paralyzed, on a ventilator, and a feeding tube. His eyes had to be taped shut to fall asleep at night. The combination of the ICU, psychosis, and the morphine caused Bob to lose his grip on reality. The loss of control he felt over losing his mind was the worst part of the experience. 

Bob was in four hospitals over seven months, he went through physical and occupational therapy. The company that provided his health insurance went under, and Bob was left to cover all of the medical bills, damaging his finances.

“When you resist the pain, then you just become broken. When you learn to accept the pain then you find that you are broken open. That opening allows you to see the meaning and purpose in your pain,” said Bob.  After everything that Bob went through he found his purpose as a Hospice volunteer, Bob was so gifted at helping people that he was referred to as “The Hospice Whisperer”. When nurses, and social workers had a particularly difficult case they would come to Bob. Bob is currently on the Board of Directors at Rainbow Hospice. 

Around this time, Bob’s good friend Ed Kane was diagnosed with ALS, he needed a wheelchair that cost $30,000 dollars but his insurance only covered $2,500. Ed and Bob were shocked to learn that there was nowhere to go to find used adaptive equipment and that most charitable organizations do not accept donations of medical equipment. After spending so much time in Hospice, Bob was wondering what was happening to all the medical equipment left over when people pass away?

This is where Bob and Ed got the idea to start Devices 4 the Disabled. Their non-profit takes used medical equipment, refurbishes the equipment, and then donates the equipment to people in need, at no cost. In 2020 the Chicago Bears designated Devices 4 the Disabled as Charity of the Year. Learn more about Bob’s story with GBS and Devices 4 the Disabled organization.  

Adaptive Devices Suggested by our Community (partial list):

  • Rollator walker by Vive
  • Shower and toilet chairs
  • Jar grips
  • Hand grabs in the shower
  • Hand held shower head
  • Handrails hand grabs
  • Subaru outback (cars that are good for the disabled)
  • Double handed mugs
  • Raised toilet seats 
  • Adaptive phone 
  • Walking stick
  • Hatch brand wheelchair gloves for driving
  • Zipper clip
  • AFO (ankle foot orthotics. Blur Rocker brand suggested)
  • Bath Mitt
  • Door knob extenders
  • Pop sockets
  • Wrist-rest mouse pads
  • Silicone straws
  • Key holder

The Foundation’s Ask the Experts Videocast is a great way for people with GBS, CIDP and other variants such as MMN to learn about important topics in their community from medical experts as well as people who have had similar experiences and struggles with these syndromes and will be able to understand and relate to your needs,