At a recent Bay Area event for Parkinson's caregivers, one of the speakers was an occupational therapist, Julie Groves. She wrote a summary of her presentation in which she gives a variety of suggestions for caregivers and those with neurological disorders. (I especially liked this comment: "Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding." And the Resources section is terrific.)

Here's the text of Julie's summary:


Volunteers Appreciation Luncheon: OT says “Thank You!”
A Speech Summary from Julie Groves, OT
PPSG Newsletter, November/December 2008 (see note below)

- I spoke of my love for my profession of Occupational Therapy with an emphasis on DOING, ENGAGING, CHALLENGING, ADAPTING, COMPENSATING, and making the task ENJOYABLE. Those words describe OT as well as what you do. I spoke of the neuro-research that supports why DOING at the right level of challenge is effective. As Dr. Liang also reiterated, since 1998 we know that brain cells can re-grow, grow more connections and have more efficient synapses. Although some cells may be damaged by PD, you are never too old to learn new techniques. And you, volunteers, might want to go back to school to be an OT!

We discussed specifically:

- Dexterity and using large arm movements: Using art work, washing windows, shooting the rubber band from the morning paper.

- Rhythm: Clapping, drumming, listening and responding to music, applying these concepts to mobility, and dancing (in a wheel chair, behind a wheelchair, both of you holding a walker, rocking arm in arm)...

- Facial exercise and swallow skills: Laugh with the funny faces, use your hands to encourage those muscles to move, pause long enough for a response, sing, and yell. Make poetry with the KKK and GGG sounds which help the swallow muscles.

- Breathing: Again, yell and sing for fun! Use your hands on the rib cage, encourage breathing into your hands and help expel the air with a firm pressure. Touch almost always makes an activity more meaningful and enjoyable. And while you are at it, be sure to breath out long and slowly yourself!

- Move more: From the audience came discussions of Tai Chi and of the Wii, both known to be beneficial for people with PD. The Parkinson’s Institute is planning training in use of the Wii; call to get on their list. The Wii is the ultimate biofeedback machine, encourages challenge, participation, adaptation for different levels of participation and skill. The grandkids or friends or significant others can play it with you. We discussed Wii sports, Wii dance and Wii Fit. Wii is like your grandkids’ Xbox but interactive. It’s not cheap, but the benefits may make it worth it. Hook up the “box” to your TV and hold the wireless “controller.” The TV/box senses how you move (swing a bat, change your balance, launch a bowling ball) and shows the result on the TV screen, giving you immediate feedback and you just WANT to do it again better.

- Finally: take care of yourself. Besides all the usual ways, we discussed:
* Anticipate change, prepare
* Accept help, ask for help
* Compensate for decreased judgment, memory and comprehension rather than expecting the old level of participation and understanding
* Be ready to say “no.” Look ahead; will you be able to do this next year? What will you do on a bad day? Adapt, before you need to, before you get worn down and grumpy.
Think through your options, talk about them with your support system.

A question was raised later in the program about why the healthcare community doesn’t address all the other symptoms of PD: constipation, lack of concentration, stiffness and fatigue, depression. Research shows healthcare providers are not comfortable or skilled at talking about these subjects. If you can bring up the subject it is more likely to be discussed, and we are more likely to learn more about how PD is impacting you.

Some resources that were requested:

Places to get equipment and ideas:
* Abledata.com, 1-800-227-0216: ABLEDATA provides objective information about assistive technology products and rehabilitation equipment available from domestic and
international sources. Although ABLEDATA does not sell any products, they can help you locate the companies that do. Hint: call and ask, don’t just use the online version.
* SammonsPreston.com
* Ncmedical.com
* Alimed.com

Resources about attending to all the other needs of the person with PD:
* "My Mother, Your Mother" by Dennis McCullough. "Slow Medicine" advocates for careful anticipatory "attending" to an elder's changing needs rather than waiting for crises that force acute medical interventions--an approach that improves the quality of elders' extended late lives without bankrupting their families financially or emotionally
* Handbook for Mortals by Diane Lynn, available in full online
* CodaAlliance.org and the Go Wish Cards for facilitating difficult conversations.

Finally, consider asking for Occupational and Physical therapy each time there is a change of condition. Your insurance probably covers therapy, and it is available through Outpatient or, if you are homebound, through Home Health. In some cases you might need to pay privately for therapy at $80 to $130 an hour. Be sure to explain to the therapist what the problems are that you are experiencing and ask for (demand?) practical solutions, not just more exercises. Help the therapist understand your individual needs. ...

Thank you, again.
Julie Groves, Therapy in Your Home ­ OT, PT, ST


Note: Julie's summary of her September presentation was published in the latest edition of the PPSG (Parkinson's Patients Support Groups) Newsletter, available online at:
http://www.ppsg.org/PPSG_2/Docs/December%202008.pdf (the summary starts on page 3)