Give Karole A “Hand”

Hi, my name is Karole MacFarlane and I have Spinal Muscular Atrophy. Spinal Muscular Atrophy is a hereditary disease that progressively destroys motor neurons. These nerve cells reside in the brainstem and spinal cord controlling essential skeletal muscle activity. Things such as speaking, walking, breathing and swallowing are affected. This leads to muscle weakness and atrophy. Motor neurons control movement in the arms, legs, chest, face, throat and tongue. When there are disruptions in the signal between motor neurons and muscles, the muscles gradually weaken, begin wasting away and develop twitching called fasciculations. I have had it since birth and am 50 plus years old!



 I live a really full life with my wonderful husband and daughter’s laughter and constant support.



About four years ago when I attended a disability conference in Phoenix, I discovered several devices that could be helpful for your average wheelchair user. I use the word “average” because I feel like I am not your typical wheelchair user. What sets me apart is I have no use of my extremities. I am virtually a head in a wheelchair. However, there was one device that could help me use all of the other devices! It’s called the JACO robotic arm. This device is amazing! Here are a couple of links for you to look at:

https://partnersinmed.com/jaco-robotic-arm

https://youtu.be/KAsIfe8xxGA

Although the girl in the video is NOT me, she’s demonstrating some ways in with which uses hers. I did attempt to get it through my insurance, but they refused to pay. I have appealed three times. One of my insurances even wrote the JACO robotic arm out of their contract so that they would never have to pay for it.

 Just imagine…

 You’re sitting at home alone and a mosquito lands on your nose. What do you do? You swat it away. I could do nothing except to watch it bite my nose. I tried to blow it off of me, but it didn’t move.

 You live in Arizona and have no way of drinking water yourself.

 You drop your phone and you can’t pick it up.

 You want to be able to spend time on your own.

 You have to ask for everything you need. I even have to be fed.

 You want to go outside but you can’t open the door.

 You want to be less of a burden to your family. I could go on, but I feel that you get the picture.

 Let me just say that this robotic arm would be life-changing for me. I could feed myself, and get myself a glass of water, pick things up off the floor, interact with my dogs, go outside on my own.…



 My family and attendants have done a remarkable job of taking care of me as long as I’ve needed it. However, I think it would be nothing short of miraculous to not have to continue relying so much on others for my care. My condition has steadily gotten worse over the last 50 years and the amount of help I need from them has only increased. With the JACO Robotic Arm, you wouldn’t just be helping me; you’d be helping everyone who’s taking time off from work to help me in ways most people don’t even consider. Please would you give me a hand? If you cannot give, please still forward so that I can keep the campaign moving. #GiveKaroleAHand

#GiveKaroleAHand