Serene Forest

Thursday, November 21, 2013

My Power Wheelchair November 21, 2013


Hello All,

Someone asked me why I use a power wheelchair when I have the ability to walk? Why don’t I force myself to walk? Why have I given up?

The following was my answer:

"Please do not judge me until you live a day in my life and understand the disabling and cruel medical condition I endure daily.



I am able to walk a few steps with the assistance of a walker or cane, but due to a very rare, hereditary, debilitating metabolic disorder called Periodic Paralysis my skeletal muscles and breathing muscles are weak and progressively getting weaker, permanently. This causes me to be very fatigued, off-balance and at great risk for falling. When I walk more than a few steps, I get out of breath right away, my oxygen levels drop, my blood pressure rises, and my heart goes into tachycardia. If I fall, I risk breaking bones from my severe osteoporosis or risk other injuries for which there is no treatment for me because I cannot use, anesthesia, antibiotics or most medications.


If I use them, I risk heart arrhythmia and many may cause a life-threatening arrhythmia called long QT heartbeat, which can kill me. I also risk going into paralysis. For me, these paralytic episodes can be full body lasting hours or days and are accompanied by the same dangerous heart arrhythmia; I am unable to open my eyes, speak or move in any way; and I experience heart rate fluctuation; blood pressure fluctuation; choking; breathing difficulties. Cardiac arrest and/or respiratory arrest can also accompany the episodes.


So, do I have the ability to walk??? Yes, I have the ability to walk. Should I walk??? No!!! I should not walk farther than to the next room with assistance. I am saving my life by using my power wheelchair!!! I am avoiding possible injury, serious paralysis and possible death.


Using a power wheelchair is important in other ways. If I am weak and in and out of paralytic episodes and or in an abortive attack (extreme muscle weakness and fatigue) and if I am in my wheelchair, I have an easier time of getting around and my husband has an easier time of helping me and moving me from place to place. He can control the chair and does not have to lift me (he is also disabled). The chair has a recline option due to the fact that even sitting up straight proves to be too much exertion for me and causes the symptoms mentioned above. If I slip into paralysis, he uses it to recline me further, as needed. I have a headrest, which keeps my head and neck straight. When in paralysis, my neck muscles go totally flaccid and my head will fall to the side causing great pain.



I am in pain 24/7 and can take no pain medications. My power chair has specialized cushions that help relieve the pain. It is also equipped to recline to a flat lying position every few hours, for proper blood circulation, which my husband or I can control as needed. I must be on oxygen around the clock and I am able to attach my oxygen to my power wheelchair, which is necessary and convenient.



My chair also gives me independence. I have a regular wheelchair but I need someone to push me around in it because I do not have enough muscle strength in my arms to propel myself. With my power wheelchair, I have the ability to go out my back door independently and go for “walk” in my forest or my neighborhood and visit my neighbors. I can shop by myself as I recline in my chair. Scooters in markets and other places force one to sit up straight and exert more energy by keeping one’s arms extended on the controls, so they are problematic for me. My power wheelchair has a special hand control I am able to use with my arms resting.


Can I walk? Yes! Should I walk? No! Is a power wheelchair the best option for me? Yes. Why do I use a wheelchair when I have the ability to walk? Although I can walk, I do not because I have permanent muscle weakness in my skeletal muscles and breathing muscles and walking and breathing are difficult for me and because I am avoiding possible injury, serious paralysis and possible death.

Do I look normal? Yes! Am I normal? No. Do I wish I could walk like everyone else? Yes. Do I wish I did not have to use a wheelchair? Absolutely. Am I giving up? No. I am trying to stay alive!"

Until later...

3 comments:

  1. I do believe we are all different Susan.. some do better with alittle more acid some a little more alkaline depending on where our body is functioning on any given day.. and yes to make the adjustments we have to keep track of our ph to figure out where we are with the aim of keeping us close to that sweet spot so to speak.. it is not easy as you indicate with your experiences.. is there a meter that can be purchased to monitor ph? I was only aware of paper strips to check against the bottle of litmus paper.. is it available at the drug store for purchase Susan? Thanks again Susan!

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  2. Hello,
    Yes, there is a meter/tool to measure our pH balance. It can be found on our website www.periodicparalysisnetwork.com under "Medical Tools and Supplies".

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  3. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment.
    Thanks for sharing.
    Power Wheelchair Cost

    Keep Posting:)

    ReplyDelete