It is known amongst the medical community that Myasthenia Gravis starts in the feet, so it is hard to decipher when my illness began. With the added limitations, a Physical Medical Rehabilitation Doctor at the hospital decided a power wheelchair was a better alternative to the manual wheelchair I have been using because this particular autoimmune disease fatigues the muscles, and I have to conserve the little energy I have.

I already know the success of rehabilitation and how it gives back independence. So, I am very willing to take this journey once again in my life. This time around, I am educated about adaptive equipment, however,  this will be my first time being measured for a power wheelchair.

When my concerned uncle asked why I couldn’t simply buy an inexpensive power wheelchair online I felt I needed to explore this transition process further. Just like many families, my family is concerned about the increasing costs that it will take to get me well and able again.

After being assessed by the occupational therapist at the hospital it was decided that my power wheelchair will need several key components to dually serve my needs as a paralyzed individual, and to compensate for the fatigue in my muscles due to the Myasthenia Gravis.

For assistance with obtaining my new chair I contact two of the Assistive Technology Professionals (ATPs) I work with at Numotion.

As a manual chair user I normally transferred by positioning myself at an angle. Now I will be in a side-to-side position in order to transfer to another surface effectively and reduce fatigue. As an added provision, I will also be using a sliding board, which is also help to conserve my energy.     

With the power chair I will have the option and ability to recline in my seat.  This motion allows me to not only rest in my chair when my muscles do get tired, but also “catherize” from my wheelchair when I need to use the bathroom.

I will also be getting a footrest that moves up and down. This movement will give my legs the ability to be in a position to where they can go all the way down for easy transfers, and also allow me to lie back to rest and relieve pressure. As a person with a spinal cord injury I have always had to be mindful of skin breakdown. In the manual wheelchair I would push myself up holding onto my wheels and get complete relief for my bottom. Reclining all the way back in the power wheelchair will have the same effect.

Because I am acute in this disease my treating neurologist wants me to rest for at least an hour for each task I do. Once my body has had more time to absorb the medication, I will be able to take shorter breaks.

Now my ATP, Stuart, can begin measuring me. While I am in a sitting position on my hospital bed he uses a 6-foot folding ruler stick. This allows him to get the right positioning to turn in to the manufacturer who will construct and customize my wheelchair. Stuart says he prefers this type of ruler because it is rigid, which gives him accurate numbers

He receives the exact width I need in my chair by measuring across my lap, taking into account an inch or two extra for clothing. As a seasoned consumer, I can say I already know that sitting in a wheelchair is as important as if I were to purchase a pair of shoes to walk in everyday. I have to make sure it’s not too small and won’t cause pinching or squashing. I have to also make sure it is not too wide or I could experience shifting. My bottom should remain in the middle of my seat, and the lower back needs to have a slight dip so that I am flexible each time the chair moves me. To be sure that the width of the back is correct, the measurement is taken across my chest at the widest part from to one armpit to the other.

To measure the height of my actual seat, Stuart goes from the back of my heel to behind my knee. It helps even more if my arms and shoulders are relaxed. This gives Stuart the ability to get a perfect ninety-degree angle. Then there is the depth; this is taken from the top edge of my seat to the back of my knee. There should be at least a couple of inches of space for added maneuverability. Alignment is another measurement Stuart needs.  This is so that my back is resting and doesn’t get tired from sitting all day. My knees will rest more easily and I will not develop any sores from wherever my legs, knees, ankles or feet are receiving friction from the surface of the chair. He then measures from elbows to the hips, and then to be in proportion with the armrest, from the hips to the shoulders. Again he is looking for that perfect ninety-degree angle as I am seated.

Much to my dismay, I also need a headrest, because the muscles in my neck are affected by fatigue. To get the correct resting position, whether I am reclining or upright, he measures from the top of my head to the bottom of my hips.

When I ask why is it important for a person to have a custom wheelchair he tells me the diagnosis or level of injury of a user greatly the type of equipment recommended. For instance, ALS and MS are progressive diseases and would require a wheelchair and seating to be as adaptable as possible to accommodate progression, a person who has suffered a spinal cord injury will likely have far different needs for mobility considerations than someone who has had a stroke. As with all complex needs, everyone will have their own unique set of requirements. An average order form for complex rehab equipment can be literally thirteen pages long with hundreds of options and it takes a broad base of knowledge to know what equipment is right.

As for the concerns of my loved ones, it is better they know I am in a wheelchair that serves me not just in quality, but in longevity too. If I were to purchase a wheelchair online the chances are the problems that came up would not be easily repaired, and very costly to me. Luckily, I am able to purchase from a reputable company and utilize my health insurance policy.