I was diagnosed with motorneuron disease about 18 months ago. Most recent EMG testing showed continued progression of the disease with moderate denervation in both lower limbs and spreading into the hamstrings and quadricep muscles, mild to moderate denervation in the upper limbs, neck, tongue. Although the disease continues its slow progression I have continued working, driving, doing yard work, and have not found it too difficult to go about a normal routine; although, it does take a bit longer to do certain tasks. Continued physical therapy and light exercising have enabled me to maintain a pretty normal lifestyle to date and that is the way I intend to keep things for as long as possible. Several months ago I had a custom fitted AFO brace made for the lower right leg to help alleviate the symptoms associated with "drop foot" and I was fitted for a lower left leg AFO brace last week. Due to severe weakness in the right leg it is anticipated that I will require a KAFO brace fairly soon. Does anyone out there have specifc information on the KAFO brace and what kind of an impact it will have upon the ability to walk, drive, etc.? I have read the literature, talked to the Neurologist and Physical Therapist; however, first hand experience and knowledge will help me in making future plans and decisions.
I had bi-latteral spring action AFO's. I now stil have wear the left AFO but needed a support anf stabilty at hte knee onthe right. I went thur a few KAFOs in the first 6-8 months until we came upon the right combination. I have a Stance control Kafo with spring action ankle joint and automatic locking and unlocking knee joints. I tried 3 different varities of knee joints. These Stance control braces allow you to walk prettynormal the knee locks and unlocks in the swing of your leg. It seems to take a lot of adjustments and trial and error to get the best system to match what strength and pattern of gait you have. I now use a becker stance control free walk stlye. cables attached to the foot plate unlock the knee. As for what changes they are big changes. First i am gratefull to have my kafo it really made a differace. But it is not like what you may have remembered when you first got AFO's. Kafo is very ridged driving is a very carefull thing if you need a right kafo. there is little to no abiltiy to rotate your leg to the side etc. in order for the brace to function it fits snug and keep your ankles and knee ridgedly aligned. As for other activities you will allways be aware of the brace and the operation of the locks at all times to bend down, sit, strat a new step. It really was provied me with great security for falling but it is not by far as easy to have "normal" fuction gettign around and with bi latteral afos. Good luck I's try and stay in the AFOs as long as they are practical.
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