51. Think LOUD AND BIG

Over hearing the title of the Parkinson’s exercise program THINK LOUD AND BIG, my ears pricked alert.

Living outside the box and thinking big is something I’ve been trying to do all my life — more recently, how to make bearable the cruelties of Parkinson’s disease.

Way back, a mother for the first time, when my baby’s Profoundly Deaf diagnosis felled me to my knees, if it hadn’t been for the innovative ideas of an Australian therapist, my son would never have acquired the fluent lip-reading and verbal skills that enable him to move between the hearing and deaf worlds as he choose. Deaf education was limited then to conventional signing methods of communication.

Without expecting a magic cure, when David’s head shaking turned to a page-jiggling nightmare fifteen or so year’s back, and his voice faded beyond the range of human hearing, we scanned cyberspace for help.

Way out of our safe and cozy box we signed up for the twenty-eight day’s stay, as prescribed, in a Kerala Ayurveda nursing home in, India. Quite a leap for an allopathic medical doctor, but David gamely committed to comply without question to whatever treatment plans the doctor set for him. Not to be a pussyfoot, I signed up as well with the hopes of reducing my increasing crippling bouts of divicuticulitis and colitis.

Twenty-eight days later, our treatment over, we checked out and headed for the Indian Ocean…David with a strong voice and no head tremor…and me able to eat all the burning spiced and gas-producing pulse foods and nuts denied me for so long.

Then there was the off-beat program of seemingly foolish and unrelated to the eye exercises we agreed to practice for half a year that gave David back such good vision he was able to spot a distant eagle. (see Blog no: 6. A Vision Quest.)

Agreeing to an alternative Ayurveda ghee-in-the-eye treatment for early cataracts wasn’t as easy. After nine years, cataracts are again slowly drawing their protective veil again between our eyes and the UV rays of the New Mexican desert. I’d be up for returning to India for another bout if it wasn’t for David’s inability to endure the long hours of travel. The medicated ghee stung like the devil but in less time than it took to boil an egg, David saw colors he’d never seen before, and I counted each blade of grass from a hundred yards.

Travelling, David and I spread out a map, make a couple of reservations to tide us over the first days in a strange land, then launch into the unknown. Yup. Life beyond the confines of convention is stimulating to say the least.

We are not ready to turn our backs on new ideas just yet.

“Hey David…Come check this out.” The month was May. I beckoned him towards the computer screen.

Our mouths dropped open as we watched the before and after video of a man’s struggles to don his jacket — one agonizingly laborious minute before his course of LSVT, twenty seconds after.

“Wow. Imagine you learning to do this.”

Here’s the link if you want to see the miracle for yourselves.

Southern Indiana Rehabilitation Hospital www.sirh.org


Advance Rehab Centre


We sat together watching a couple of other Think Big u-tube videos.

The premise of the Think Big program made total sense. So many of David’s movements had shrunk over the years. Letter formation for example: His writing now a tiny scrawl indecipherable from the scratchings of a bird’s beak on Aspen bark, the stride of his walk, a shuffle with the lift his feet gone, one arm hangs limp, David lost the ability to switch balance from one to the other leg. When we walk the drive, he often stoops nearly doubled with his face parallel to the ground.

The local LSVT Big Practioner’s goals were first to build back David’s basic skills to give him better control of his movements before attempting more complicated tasks like getting up and holding a glass simultaneously.

Sitting in on therapy sessions I watched and learned the repetitive tactile and verbal clues David needed to re-pattern his stand-up-sit-down, to straighten his posture, correct his body’s left tilt, to switch balance and weight change from leg to leg.

The first time I watched him stride around the gym arms swinging I clapped and almost cried as his hesitant shufflings changed to near-normal strides. Re-juvenated by his success, round and round the therapy gym he circled.

The therapist walking backwards held a pair of hiking poles and manually swung David’s arms till he could take over on his own. We do the same now on our daily turn up and down the drive.


Miracles in the therapy session are one thing. Quite another when they materialize at home. Though I’ve raised the height of the seat, and David still struggles to rise out of his chair, I no longer have to use my last ounce of strength to bodily haul him to his feet. With a light tactile clue and encouraging “one, two three and UP,” he’s standing and ready to right his balance before walking himself to the bathroom or wherever.

“Weight over your toes, David. Now bend and lower…” Verbal clues are often enough to get him safely settled.

With no more sessions available this fiscal year, it’s up to us to keep up the LSVT practice. In the New Year it may be possible for him to do the Intensive course: one-hour-a-day, four-day-a-week, for four weeks, which according to David’s therapist, can work amazing results.

What I’m trying to Think Big and Loud is making our daily lives a whole lot more manageable. My shoulder joints, knees and arm and core muscles are almost smilng at not being stretched to snapping point as much. I am happier. David delights in his increased mobility.

Best of all, I realized this week we are again doing the no-no things I swore never to do with him EVER.

Like go to the Cinema, or eat out, the two of us alone. I have the LSVT program to thank for our stress-free outings, for his better mobility and balance. Can it be our lives are improving just as David was ready to slump into apathy.

Yesterday in Albuquerque, David’s neurologist was knocked sideways by his firm movements.

“Keep up whatever it is you’re doing,” she encouraged.

Perhaps next visit David will perform that jacket-putting-on miracle once we learn the steps.

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  • Next week’s blog: Hmm? Not sure yet.
  • Previous blogs:
  • 1.Wearing a Hat from Hell * 2.Back Story before the Tidal Wave. * 3.There’s a Mouse in the Room. * 4.Shape-shifting — Husband to Patient:Wife to Caregiver. * 5.Think your Home is your Castle? Think again. * 6.Vision Quest beyond the Box. * 7. Cats in the Belfry. * 8.“En Guard Messieurs”…Dare me: cross this Line. * 9.Like it or No — Prepare to Play God. * 10.’Tis the Season to be Jolly — not for me it isn’t. * 11.Hello. Hello? Anyone Home? * 12.The Blue Hole — 90 miles ahead. * 13.Disabled — Daft — Demented? * 14.Up. Up and Away…* 15.Humble Pie. * 16.What do I have to Complain About. * 17. Come Back Tooth Fairy. * 18. Promises Promises. * 19. Fly Fly Away. * 20. Refresh. Reboot. * 21. Can this be Happening * 22. Hate when David… * 23. What if…? * 24. Hanuman and I have a Birthday.* 25. Happy and Glorious.* 26. High Time. * 27. * Change?…As good as a Rest. * 28. It’s a Long Way… * 29. Missing Something? * 30. Are we there yet? 31.* To voice or not to voice — I’m talking feelings here. 32.* Metamorphisis…grub to?*33. Roller Coaster. * 34. Testing. Testing. * 35. A Bird’s Eye View.* 36. Crossroads. *37. Madam your slip is showing.* 38. If only caregiving was… as easy. * 39. Where everything is possible. *40. Out to Pasture.* 41. Congratulations. You’re a winner. * 42. …and counting. * 43. Re-entry Burn. * 44. Transition…the gentle slide. * 45. to truly exist. * 46…and the world laughs with you…* 47. Heaven is when you think it is.* 48. Silence is Golden.* 49. Nice girl turns not so nice. 50. The aftermath.
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