I woke up in the middle of the night, again, so I decided to start this string in order to get some fedback from people that struggled with the same isse as me. Fear of losing my mobility!
I have been living with MS for almost 16 years. Like most of you, I deal with numerous crazy
symptoms associated with MS. Fortunitely many are treatable with medications and others you just deal with. Although I fear the cognitive decline that started happening a few years ago, what keeps me awake at nights is the fear of losing my mobility. I struggle with the thought that some day I might not be able to walk on my own. My wife gets mad at me because I refuse to give in and use the brand new power chair in my garage that my insurance company bought me a few years ago. Every time I think maybe I should start using the chair something tells me to keep walking, maybe it will help keep me mobile longer.
This crazy thinking is what drove me to inventing what I call my MS Muscle Strength Compensator or MSMSC for short. I have problems with my hip flexor muscles as well as drop foot. I can barely lift my left leg to take a step and the drop foot has caused me to fall more than once. These two issues were my barrier to staying mobile. My MSMSC started as a simple tool to help me more easily lift and move my leg but has since evolved. I am now on my 7th or 8th prototype. I normally can only walk short distances (maybe 100 yards) on my own but using this MSMSC device, I was able to complete the one mile route this year at the MS Walk in April. I cant tell you how much completin the walk meant to me.
I started thinking who better to provide feedback on a device than the very people who deal with the same issues I am trying to solve. I have created two short videos that show the MSMSC and explain how it works. I placed both videos on U Tube. If you search for MS Muscle Strength Compensator or just MSMSC it should pull up the videos. Take a look and let me know what you think.
I have tried many of the mobility aids and AFOs out there and none worked very well for me.
Maybe the people who have the disability are the best people to come up with a solution.
Look forward to your thoughts.
I watched your video because i have the same loss of mobility fears. Your basic device and attachments appear to be a great solution for this problem.
In turn i have a friend that has had polio since birth and wears out his pant legs using them to move his leg that doesn't work...your MSMSC device would do the same thing for him as well and save his destoying pants prematurely.
Great idea the MSMSC, a product i could see myself using when my mobility gets more limited than it is now....thumbs up.
Thx for your post. I appreciate the knowledge and information.
Thank for checking it out. I appreciate the feedback. Hpefully the Techfidera keeps you from needing mobiity help. Take care
What a creative, useful idea. The best devices to help come from our own need to problem-solve.
For my situation, this would be quite helpful. When getting into a car I am always the passenger now because my eyesight has been affected. Because my right side is like your left, I sometimes need to ask a 'lucky' family member to throw my right leg into the car! Having this device would make life a little bit easier.
I noticed that you use LLC in the name of your utube. Hopefully you are able to make something out of this product.
I am in early stage of develoment. I have four people using the MSMSC including me. So far two are using for foot drop and two for hip and foot drop issues with good results. Trying to figure out what to do next. I appreciate any ideas and feedback.
Thank you for posting this. I've attended a few MS support groups and I cannot find a nice way to ask, "How will I know when it's happening to me and I'm headed for a wheelchair?" I'm having an incredibly difficult time coordinating my body movements to walk properly after a "minor" orthroscopic repair. My 4-6 week recovery is now 7 months and I can't walk properly at all. My muscles have atrophied. I have been going to physical therapy and the gym and nothing seems to help. I'm terrified of the wheelchair. I can't seem to find someone to help me with the mechanics of a proper step. Was hoping this board would have recommendations.
My guess is you will likely "Just Know" when or if its time for the W chair. However, my advice is not to give up. If you are not getting the answers you need from your physician or physical theropist it may be time to move on and find someone that can provide answers. I have had the best success with physicians and other health care professionals associated with a major university or hospital that offers specialized care for my situation. Just don't give up!
I've watched your video and I have the same weakness, just not as bad. It is difficult to stand up straight. Your invention is awesome. It can't help me but kudos. Not sure why you haven't received more feedback.
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