Ken's New 'Stand-Up WheelChair'
My name is Carol Macinga and I am attempting to raise funding for a new wheel chair for my brother Ken, who is only 56 years old, and who has been battling Primary-Progressive Multiple Sclerosis (MS) since November 1992.
I put together this campaign when Ken called me recently and he was so excited about the possibility of being able to obtain some quality of life -- some independence -- with the assistance of what he described, and as what I see as a 'MIRACLE WHEELCHAIR!'
In 1992, Ken quickly went from using a cane, to a manual wheelchair and then to a power-operated wheelchair. He then lost the strength that allowed him to transfer himself into a separate device known as a ‘standing frame’. In other words, I have not seen my brother 'stand' (be upright) in over 14 years.
Being forced to sit in a chair, and the inability due to loss of strength to change positions sitting has taken a toll. He finds himself either in a wheelchair or flat on a mattress or on flat on the floor, unable to roll over or sit, for hours at a time until someone can come to his assistance to move him. Scoliosis of the spine and osteoporosis are directly related. Kens skeletal core has been compromised.
In addition to muscle atrophy, the current concern revolves around the development of pressure sores and skin breakdown especially on the hamstrings, glutes and back. Imagine sitting between 8 to 12 hours straight every single day for the last 14 years with little to zero movement. How would you feel (both mentally and physically)?
There is new technology from the manufacturer Permobil that allows the wheelchair user the ability to stand anywhere / anytime.
Ken was able to use this model, F5 VS (pictured above) for a few days recently.
He felt the positive attributes immediately.
To completely understand and appreciate the positive results of this 'stand-up wheelchair,' I've listed the pros as follows:
+ The muscle spasms that he deals with in his legs, ankles, feet, back and neck were reduced in a short time! The 'stand-up wheelchair' stretched out his torso, thus stretching out his muscles, and guess what! Blood flowed properly thoughout his body which brought on a feeling of relief!
+ He was able to breathe deeply.
+ Interaction was at an elevation of having eye-to-eye contact with others. Imagine that!
+ The neurological burning (like a heat rub in an open wound) and pins + needles feeling, which he has dealt with from the very beginning of being diagnoised with MS, were greatly minimized.
+ He was able to use a pen to write on paper and hold eating utensils. His hands would not grip nor hold a fork or spoon, so he uses a large straw to eat food that can fit thru the opening. He can not even cut up his own food. In the few days that he was able to "demo" the 'stand-up wheel chair' he was able to hold a fork and spoon and cut his own food up and feed himself. This is an undescribable miracle in and of itself that this simple piece of machinery gave back to him.
HOWEVER, and this is where I need your help so much.... Ironically, Medicare does not recognize the proven benefits of standing and will not approve funding for this needed option on the wheelchair. We are speaking directly about “QUALITY OF LIFE” here, not a luxury! Ken is not trying to walk or run. He just wants to stand-up and regain dignity and independence! I don't understand how any insurance company can deny such a basic request. I am furious about this.
WHAT CAN YOU DO TO HELP MY BROTHER KEN?
Please donate now by clicking the "Donate Now" button and please, only donate what you are comfortable donating without placing a burdeon on yourself or your families needs.
I am not looking to raise any extra money outside what it costs to get Ken the essentials in this version of the wheel chair! There appears to be 3 versions of it.
Please reflect on this imagery: If you had to live the rest of your life in a wheel chair, wouldn't you want to be presented with a chair that will allow you to function to the best of your ability without placing undue stress and burdeon on anyone else? Sure, there are other features of this chair that I could dream of adding onto for him, but I can't imagine even asking for more than what is just. I simply want my brother to be able to stand, reach into the top or bottom shelf of the refrigerator instead of being restricted to only what was directly in front of him on the middle shelf, so that he may eat when he is hungry. I want Ken to be able to open the closet door, and pick out a shirt to wear instead of pointing to what he wants and relying on others to reach it on his behalf and dress him.
There are so many little things in our daily routine that we take for granted that, until they are taken away from us, even if just for a little while (such as having a broken arm or leg), and it's unacceptable for anyone to be denied this piece of medical machinery because it costs too much and insurance won't cover it.
If you are unable or unwilling to support Ken by donating today, then on behalf of my brother, and all those who are paralilzed.... would you please pass along this campaign link to everyone in your circle of friends/family in hopes that someone else can help me to help Ken. (In the future, perhaps you can keep Ken and all others with MS in your prayers, and please consider participating in or help sponsor an MS Walk or bike ride if that opportunity ever presents itself to you. )
May God bless you and your loved ones for your time today and for your donations. We never think that we or our family or friends will have to face a disease that robs us of our basic needs in life, to stand, to breath freely, or to look another person in the eyes when we talk to them. Please give thanks for how fortunate you and your loved ones are, and please help me raise the funds that I need so that I can buy Ken this 'stand-up wheelchair.'
Thank you all very much.
Hugs,
Carol
(Jesus, I Trust In You!)