Hello, everyone. I'm Phil, and this is Deb (picture).
We're asking for contributions to make it possible for Deb to have a wheelchair which (a) has an ergonomic seat to hold her spine firmly against the back of the chair, and (b) reclines, so that she can spend much more time out of bed.
Since 2004, Deb has been confined to bed rest to manage severe back pain. (Treatment involves horizontal rest, physical therapy, and way too much pain medication.) This will be the case for all the rest of her life.
Her condition results from very extensive fusion during scoliosis surgery, by Dr. Robert B. Winter of Minnesota, when she was thirteen years old. The fusion runs from the 5th Thoracic vertebra down to the 4th Lumbar vertebra & is supported by 2 Harrington Rods.
Several Orthopedic surgeons, including a team from the Philadelphia’s Rothman Institute, have determined that surgery cannot improve her condition, but would only increase her pain. Eventually Deb will lose bowel and bladder control and may lose all ability to move her lower body. Per her doctors, it is always hard to predict exactly how the nerves in the spine will react to damage. The uncertainty adds stress for us all.
For now, we know that the Lumbar vertebrae have become ground down; the disks are collapsing in various ways.They have become herniated and bulging, with the edges getting "bitten" off by the increasingly sharpened edges of the vertebrae as she moves. She has lost almost two inches in height as the neural spaces have collapsed.
She is able to stand for a few minutes each day, with accompanying increased pain, to use the bathroom and to get water and pre-prepared fruit. Sitting up is easier, but any upright posture puts weight on the deteriorating vertebrae and nerves. Following any sitting or prolonged standing, she will be in significant additional pain for a day or even two. Taking breaks by laying down helps, but is not always possible depending on where she is.
Our goal is to allow her as much time as possible out of bed. She has lived like this for the last fourteen years (since she was 43 years old). She misses spending time crafting, quilting, visiting friends & family, going to church, and even going to a movie at the theater. (Deb notes: "Just having the flexibility to sit/lay down in the sun would be a joy.")
The doctors would like to see her spend more time out of bed. In order to allow her to do so, she needs to be able to lie back and take the weight off the spine at need. Her regular chair is an ergonomic lightweight model manufactured by Kaman, which has proven extremely comfortable. We would like to stick with the Kaman ergonomic design for the seat and lower chair back, since it has worked so well for her.
However, with the continued deterioration of her spine, the basic ergonomic wheelchair is no longer enough for her to be up for long. We, and her doctors, have strong reason to believe that the Kaman Reclining Ergonomic Wheelchair will allow her much more freedom from bed, due to being able to lie back without being in bed (and without having to maneuver to and fro to leave a wheelchair, or leave a gathering to find a bedroom when visiting).
Our goal is the Karman MVP-502 Lightweight Ergonomic Reclining Wheelchair, by reason of greater comfort than other competitors. For the last several years, her maximum time out of bed has been steadily declining; her doctors suggested that a comfortable reclining chair will make all of the difference in her ability to be up and increasing her participation in family and social matters to a much greater degree.
While she will not regain full mobility, we all expect a dramatic increase in her mental well-being. In addition, being more active will reduce the chances of a pulmonary embolism, a frequently fatal variety of blood clot.
The cost of chair plus stabilizers to prevent backwards tilt is about $2200. We expect to contribute as much as possible, and are working to save money toward this value. We would be very grateful for any help which our friends, relatives, and acquaintances are comfortable providing. Our insurance is extremely 'spotty' in regards to wheelchairs, frustratingly covering only certain model & sizes; we will naturally seek reimbursement, but are not optimistic about succeeding.
In addition, having been in bed more than twenty-three hours of every day since 2004 has had the effect of approximately tripling the normal wear on our bed. The bed, a Select Comfort (Sleep Number) king size, has held up remarkably well in view of this - think of it as having had over 40 years of normal use.
After this time, it is badly deteriorated and frequently does not provide support for Deb to rest in comfortable positions. We are currently looking into affordable replacements, preferably with an elevating base, so that she has the ability to elevate her upper body slightly when she is in bed. With this change, she can read & watch videos without prism glasses, she can enjoy speaking with guests and rest in greater comfort.
Any funds over the cost of the wheelchair will be devoted to buying a replacement for the current bed, as described here.
Thank you for your consideration.
--Deborah Lambert-Sevetson and Phil Sevetson
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