Sunday, February 28, 2010

ALS Awareness - Shame On Us

The Brain Game has been a staple of Saturday evening television in central Indiana for decades.

It's a knockoff of the old College Bowl format and the Brain Game teams attract smart high school kids with the ability to retain and recall facts and figures. Teams are coached and train and practice and often have members who specialize in current events or medicine or chemistry or literature. These are tomorrow's Jeopardy! champions. Some schools take this very seriously.
Last night in one of the tournament rounds, a question was, "What is the three-letter abbreviation used for Lou Gehrig's Disease?" The silence was deafening. Usually somebody rings in quickly with at least a good guess. Nothing. Then a student from Park-Tudor rang in and stumbled, "M...uh...S...uh...I don't know." That gave Noblesville a free guess. A student rang in and with a quizzical look on his face answered, "A L S ?" Right.
These are some of our best and brightest students who live in an area where ALS walks are held every year and where there is an ALS Association chapter and an active MDA organization.
We should have smart high school students knowing not only the abbreviation for Lou Gehrig's Disease but also the disease course, the prognosis, the challenging science, the advocacy issues, the impact that it has had on other teens' families.
We obviously have not succeeded in the awareness category.

Monday, February 1, 2010

Grandkids Guide to ALS

I don’t know about your grandparents ability to talk, but if they can, get them to talk about childhood, family, where they've been, things they've done and yes, even their opinions on things. You could even "tape" these conversations.

One thing that some people - although certainly not all - like is to have people interested in them and what they have to say. You can learn to listen with interest at any age. Not only might your interest lift their spirits, but it will be important to you in years to come because having these answers to your questions will always travel with you as you grow.

Naturally you can help with chores around the house - you can keep them up to date on your activities - you can ask for opinions followed by advice. I think that memories of an easier time are important- no matter what they lived through.

I realize that my suggestion might not be possible depending upon the stage of the ALS progression. I don’t know if speech would be too slurred to understand, and you may need help from a caregiver. Breathing and swallowing difficulties might prevent long conversation, but eye contact and smiles can go a long way.

You can look around the home to see what needs to be done, put together your ideas, then tell them what you would like to do…whatever it is…ask for their preference. Since usually in ALS the senses of sight, touch, hearing, taste and smell are not impaired perhaps you both could sit in the sun, watch and name birds or go to the mailbox together, weather permitting.

You know your grandparents better than anyone. What was their interest before ALS was contracted? Would they like your assistance writing to old friends? Would they appreciate library books about subjects of interest? Do they enjoy being online or email? Perhaps you could help with that - perhaps they could teach you something. Are there family photo albums you could look through as a way to spark stories and fond memories? Would they like to just sit quietly next to you, and watch videos or a favorite program.

Either way they are going to be made happy by your presence and your love. Grandparents are different, and what you do should make both of you happy, aside from any chores, yuk.
Talk to your aunts, uncles, parents and others who knew them when? They might shed some light on other interests. You could put together a family album with them as the center with help from everyone.

Look to your mind for the right answers, plan for today, and share it with Love.