My brain aneurysm hit sometime after midnight January 18, 2005; they called it a “left cerebral hemorrhage secondary to rupture of an AVM”, and after an emergency surgery, I was in a coma for about three weeks and went through a “prolonged operative course" all of which was followed by weeks of inpatient rehabilitation. I still have “right-side spastic hemiparesis” which simply means I can’t do much with my right arm or leg. I’m only able to elevate my right arm 30-40% and my hand-grasp is weak. I ambulate independently using an ankle foot brace and require some assistance for daily living activities, particularly those that require fine motor skills. I’ve had my share of PT, OT, speech and cognitive therapies for my hemiplegia and aphasia at numerous facilities here in the New York area. Electrical stimulation, EMG, biofeedback, botox injections, Saebo, Bioness, Neuromove… ‘been there, done that… and here I am, still putting-up with the frustrations of a spastic right hand and leg. Before 1/18/05, I was a keyboard pianist.
There’s no question that most of the therapists that have worked with me have gone over and beyond the call of duty for me, and I am eternally indebted to each of them for their untiring dedication. But I also trust that they will forgive me when I say nevertheless, that I believe most of the crucial advances I’ve made have come from utilizing ideas I devised on my own.
Let me give you an example; for the first two years after my AVM, I was totally dependent on others to get around outside. I couldn’t go for long walks without being wheel-chaired, even though my left leg was perfectly ok. Then I thought; why not try one of those adult tricycles I’d seen every once in a while. My left leg could push the peddle that would automatically force my right to do the same. Of course I’d need some customizing of the right peddle to prevent the leg from going where it wasn’t supposed to go, and one of the mechanics at my local bike shop was more than accommodating in cutting a piece of wood to the shape of my shoe and attaching a brace to keep the leg in place. Now my bike not only provides me with mobile independence, it serves as a vital form of my daily rehab regimen. Think about; couldn’t you do the same thing?
I’m reaching out to all AVM and stroke survivors to show you some of the ideas I’ve come up with, in the hope that you can adapt these ideas for yourselves, and yes, maybe you have an idea for me! Of course there’s a new custom designed rehab robotic/electronic “toy” introduced every week, each guaranteeing that it will make us walk and toss frisbees across the park, and some of these may have made a difference for you, but, “our” ideas come from “first hand/leg experience”; they won’t cost anywhere close to what the “toys” do…they’re simple, and work even better.
'Lot's of luck!
Yossi Federman firstname.lastname@example.org
essentialtremor.org - 888-387-3667
National Aphasia Assoc. - 800-922-4622
Stroke Connection Magazine - 800-553-6321