Dystonia update

Richard went to the neurologist for a botox treatment. The botox is injected precisely into the affected muscles of the arm so that the extensor and flexor muscles do not contract at the same time. These particular muscles are thereby paralysed. However the effect of this treatment has been that his middle two fingers have been rendered paralysed and he still cannot write with his right hand, and the use of his hand/ arm has been affected so that he struggles to do things that he could do before the injection. He went to play tennis the other day, and really battled to hold the racquet.
So where to now?
The injection lasts about three months, so he will have to decided whether he continues with that treatment. He does still have to go back to the neurologist for feedback so that the Dr can know what the effect has been. I guess it's all a learning curve and the Dr also needs to know whether he was precise enough.

And so the struggle continues until final victory!

The Joy of Achievement

In October 2007 I wrote about the dystonia that Richard has, and of what can be done about it. He tried the medication, and turfed that because of the negative effects and how it impacted his cognitive thinking and skills. He will try the botox injection, administered into the muscle by a neurologist - but has yet to be contacted about when the clinic will be held. In the meantime he has been looking for ways to deal with the problem and use his left hand more and has made good progress.

• His writing is improving.
• He uses Linux as an operating system on his computer, and has mirrored his keyboard so that he uses only his left hand - q is q, but when he uses the space-bar and presses q it is p - and so on! This you can do with linux but not with windows.
• He has been constructing a one-handed keyboard device. He was sent a blue-print and used it for the physical part, but used a different chip from the one recommended and wrote his own code for it. Today he announced that it was complete and working - and the smile on his face stretched from here to forever. So we celebrated the hard work, time, effort, problem solving and all that had gone into constructing this cunning device.

Here is a picture of the cheese-cake he asked for, and all our smiley faces! The cheese-cake was baked by someone at Spar - whose efforts I really appreciate, having given up baking myself a long time ago!!
Richard is sitting at the top right-hand corner of the table - next to me.

Writer's Cramp

It's something we would have laughed about before we knew what it was about. It's called Focal Dystonia, stems from the basal ganglia in the brain, and affects the muscles of the hand and forearm - causing spasms during writing. Automatic fine motor skills, that we take for granted, are no longer possible without supreme effort. The easiest is to learn to write with the other hand - which is not easy at all.

It's a bummer if you are a 22year old 3rd year going into 4th year electronic engineering student, who needs to write or use a computer keyboard a lot, and who needs to put together circuits and things that require accurate, fine motor skills.

Medication is not helpful. Botox injections may help. Occupational therapy could help develop the other hand and arm. Any advantages? - depends on your mindset:
- develop the other side of your brain
- develop patience and forbearance
- develop creative ways of dealing with frustration
- investigate the best buys in small keyboards that will fit the span of the other hand - to prevent shoulder and arm stress in that other arm
- invent cunning devices that will help make life easier for other sufferers

- gives intercessors something specific to pray for/ about
- gives non-sufferers the opportunity to say "There but for the grace of God go I"

Its a bummer if said electronic engineering student is your 3rd son and you can't do a damn thing to help or take it away.

Some things our children have to negotiate through themselves in life.
We can stand by and encourage and pray.