As Kennedy's Disease progresses, those of us with the mutated gene occasionally find ourselves looking up at the sky (or ceiling). I have found myself in that position far too many times. In my younger years, I just stood back up and dusted myself off. In my middle years, it took a little longer to stand up and occasionally it was nice to have someone or something nearby to help steady myself afterward. If I go down today, I need someone to lift me up to a mostly vertical position where I can get my legs underneath me and the knees locked. This takes a lot more strength on the part of the lifter.
There are also times I find myself in a lower chair and I just cannot stand up. That is because my buttock needs to be about 30-to-45 degrees higher than my knees before the quads can finish the lifting of the body. If I lean too far forward trying to raise my buttock and have nothing in front of me to brace myself on, I could lose my balance and fall forward.
Leverage is the key to any successful standing-up process. Without anything nearby to use as an assist, another person can help you safely reach the standing position. I learned a lot about this subject when I broke my fibula and tibia three years ago. Not being able to put any weight on my left leg for several months made every transfer a joint operation.
For me, a person can use my belt ... lifting from the back of my pants. This provides just enough support to make the difference. Any good quality leather belt (the wider the better) is easy for the caregiver to grasp and hold onto. If I am not wearing a belt, then grasping the back of my pants and lifting works well (except it gives a wedgey).
Now, if I am on the floor (or ground) after a fall, I find that I need a minute or two to get myself oriented (think through the process of how to stand up). The key is to get my feet underneath me and set before asking for help. When I am ready, it is best to have someone stand behind me and wrap his arms under my arms with his hands locked across my chest. I liken it to picking up a large sack of potatoes. Using their legs to lift, the person needs to get me to a position where I can lock my knees and regain my balance before letting go. The belt lift does not work well in this situation because your back and abdominal strength does not allow you to straighten up. The one exception is if the belt is high on your chest (under your arms).
Important: Never release the person until they have given you a verbal signal that it is okay. Releasing them too soon could result in another fall.
For more information, follow this link: How to use a gait belt .
Bruce:
ReplyDeleteI ran into a period of time when I kept falling down due to various reasons (carelessness, uneven ground, tripping on my own feet, losing my balance, etc.) and during these incidents I had two "guardian angels" come and rescue me.
The first time I had gone shopping and trying to get back into my SUV. Well, I lost my balance, fell back and landed very comfortably on my behind. No broken bones, just my dignity was bruise but then I realized I just couldn't get back up. I called for my wife who came running to help me but due to the ground situation, just couldn't get the right angle to pull me up. Then out of the blue, this older, skinny lady came over very casually, faced me, asked me to wrap my hands around her neck while she was lifted me with a bear hug. I just couldn't believe how this little person was able to do that but after talking (and thanking) to her she mentioned she used to be a nurse and that that was something she was taught in order to lift patients. The only trick is to keep your back straight.
Well, a week or two later, my wife and I took a short trip to Reno, Nevada to donate some funds to the casinos when I found myself on the ground again. My wife had taken my electric wheelchair out, assembled it, I had turned it on and accidentally put my weight on the controller. Well, the thing just took off on me and the next thing I knew I was looking up at my wife's concerned/laughing face. Then again, out of the blue, a car drives down, a very short (in stature but not heart) jumps out the car, applies the same technique, lifts me up, gets back into her car and takes off. What is going on here??? Am I the only one that didn't know how to do this? And on top of that, I never even got the thank the person!!!
I am now more careful than ever and almost every day I do thank those two people, whomever and wherever they are for coming out of the blue to help me back up. Since then, my wife has been able to pick me up the few other times I've met my friend "Mr. Cement".
Luis, thanks for sharing. Most of us have these type stories. It means so much to us to have that special person(s) come to our aid. Embarrassment is one thing, but the inability to recover oneself to the standing position is something much worse.
ReplyDeleteI always talk about my guardian angel having to work overtime ...
I am the daughter that Bruce expressed regret at passing the gene onto. I also recently had that same regret and grief when my son started to show signs of Kennedy's Disease. As parents we want nothing but the best for our children, but sometimes life isn't always fair. I believe in the power of positive thinking and making the best of what ever life has to throw at us. I see that in my father. He is doing a great job of using his own trials to help others. Sometimes just to know that other people are going through the same thing and that we are not alone will make all the difference in the world. Sometimes a trial when faced alone can seem insurmountable, but a trial faced with other's who care is indeed conquerable. Take life one day, one step at a time and live it to the fullest. To often we spend way to much time and energy thinking about woulda, shoulda, coulda's. God bless you all.
ReplyDeleteI just read the article submitted by Bruce's daughter. I am almost in tears. My father has Kennedy's Disease, and I am a carrier. I show many of the female symptoms of cramping and fatigued muscles. My older sister shows the same signs. I have a young son, and am scared that he will also have the disease. My son loves his grandfather, and has seen his struggles, I wonder when he will be old enough to understand he could also have this disease. My sister has it worse. She has twin boys. One might have it, one my not. Both may not have it, or both might end up with the disease. Very scaring thing to live with as a mother. Even harder for the grandfather who feels responsible for passing it on. Love and strength to all who have loved ones with this disorder. I am thankful everyday that my father is alive. It could be much worse than what we all deal with day to day
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