Myositis Support and Understanding recently spoke with Rich and Carla Stevenson, David Quay, and Barry Pace about life with Inclusion Body Myositis (IBM) and how it affects toileting needs and the solution they found which is safe, affordable, and allows for more in-home independence.
Rich reached a point with the debilitating, muscle-wasting disease that he required assistance from his caregiver and wife, Carla, for his toileting needs. Even though they both agree that she is physically strong now, the time may come when she is unable to assist him without causing injury to one another.
IBM is a progressive neuromuscular disease which affects a person’s ability to get into a sitting or standing position because of deteriorated muscles in the hips, thighs, lower legs, forearms, and hands. IBM is a form of Muscular Dystrophy and referred to as an Inflammatory Myopathy, together with Polymyositis and Dermatomyositis.
The Stevenson’s research for solutions to allow Rick more toileting independence ultimately lead them to LiftSeat® because Rick was beyond the help of simple grab bars and toilet seat risers that sit on top of the seat and require a certain amount of muscle strength to use safely. Instead they found an electronic solution. They found LiftSeat®, a fully automatic power toilet lift, which can be used both over the toilet and as a powered bedside commode, significantly reducing the chances of falls while providing independence and dignity. With the optional wheels it can be moved easily from room to room providing multiple solutions in one. It is operated by using a simple two-button controller, which will slowly raise and lower a person onto and off of the toilet in a similar manner as the lift chairs used by so many people for assistance to sit and stand in their living areas.
In the US alone, more than 235,000 people are injured in bathroom falls each year according to the CDC’s 2011 statistics, and fall incidences are markedly higher in the elderly and those with disabilities caused by diseases like Myositis. Muscle diseases, including the forms of Myositis, impact a person’s ability to sit and stand; often requiring they have assistance when using the toilet.
LiftSeat® was originally developed to assist people with their toileting needs in hospitals, rehabilitation facilities, long-term care and skilled nursing facilities, but is now available to be used at home, which provides great promise of independence for people who wish to continue to live in their home and may eliminate or, at least, extend the time before a care facility might be considered.
The Stevenson’s have enjoyed the LiftSeat® for more than 3 years now because it has eliminated the need for Carla’s assistance and allows Rich to use the toilet safely and independently in their home. The Stevenson’s are also pleased that the LiftSeat® is compatible with the TOTO Washlet®, a bidet-type device which washes and dries the skin, an essential for personal hygiene, and a task made especially difficult with the deterioration of hand and arm muscles.
David Quay, who also has IBM and is a 3-year LiftSeat® owner, said “As I have gotten weaker I raise the seat up before I sit so I don’t collapse down, and now I use it to help get dressed after a shower.” Some of the features that appealed to David were its ergonomic design and ease of use of the controls as well as the “great and helpful” customer service from LiftSeat®.
David uses the Bio Bidet® with his LiftSeat®, which allows his wife to be uninvolved in cleaning David after using the bathroom, a task she was reluctant to perform.
We then spoke with Barry Pace, another patient with IBM. His first, immediate concern when searching for a toileting solution was his height. Standing at 6’ 4” he was concerned with which product would support him the best.
After reviewing some options, he decided on LiftSeat®, as he told us it was clearly the better choice in quality and functionality. Barry says he can easily transfer independently from his power chair or rollator to the LiftSeat®, even with diminished arm and hand strength. He has had the LiftSeat® Independence II for about a year and his is fitted with 6″ height extenders and a Bio-Bidet®.
Barry told us, “LiftSeat® functions similarly to a power lift recliner, angled at about 45 degrees to the floor at dismount. It sits me down to a normal position and raises me up to the appropriate dismount position. It does require me to lock my knees as it stands me up but overall, it is the easiest seat I have to dismount from, including lift recliner and power chairs.”
When ordering, Barry spoke in some depth early on with customer service and told us that Christina is unbelievably well versed and helpful.
Finally, like David, Barry found an unexpected benefit using LiftSeat®. “I use the arms on the unit to lean on as I can’t stand without something to lean on, in the mornings and evenings to change underwear and britches.”
Special offer for our Members
We have partnered with LiftSeat®. Mention Myositis Support and Understanding and you will receive $100 off the cost of LiftSeat®
The LiftSeat® fits over almost any toilet with easy-to-adjust leveling feet. Its steel frame weighs only 55 pounds. A great feature of LiftSeat® is that you don’t have to make costly bathroom modifications in order to have your toileting independence. It is an affordable solution with two in-home models available. The standard model is $1249 and holds up to 315 pounds. The other model, which holds up to 450 pounds and has a little more space, is $1599. The savings from not having to remodel your bathroom makes LiftSeat® that much more affordable.
LiftSeat® is considered “durable medical equipment” (DME) and may be covered by some Medicaid Plans and private insurance companies when prescribed by a physician. Rich, who served in a non-combat position and did not have a service-related injury, uses the Veterans’ Administration (VA) for his medical needs. He told a VA physical therapist about LiftSeat® who arranged for the VA to purchase, deliver, and install the device in their home.
Jerry Williams, Founder and President of MSU, had the opportunity to try the LiftSeat® at the 2015 TMA Annual Patient Conference and he was amazed at how easy it was to operate and how well it worked. He just stood back against the raised seat and used the controller to lower himself down onto the toilet. Using the same controller, Jerry simply raised himself up without the need for his cane or any of his weak muscles to do the work. Although Jerry has Polymyositis and is not yet to a point where he requires such a device, he knows when and if the time comes, LiftSeat® will be the perfect solution.
MSU and LiftSeat® have partnered to offer our members a great discount. When you mention Myositis Support and Understanding you will receive $100 off the cost of LiftSeat®. LiftSeat® is a U.S. based company.