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Harley Flathers: Take a step in direction of fighting ALS
8/27/2008 9:45:03 AM
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The cure is still unknown, but there's slightly more known about the origin. These are the words of Dr. Eric Sorenson on the horrible disease ALS.

Sorenson is the director of the Motor Neuron Diseases program in the Department of Neurology at Mayo Clinic. I first met Dr. Sorenson in September of 2003 at East Silver Lake Park when friends were walking to D'Feet ALS. Wayne Arnold asked me to come and emcee the kick-off and give a pep talk. This I did for three years but before we reached September of 2005 we had all said good-bye to our dear friend Wayne, who suffered from ALS just over three years.

Often referred to as the Lou Gehrig's Disease because his death from ALS brought a new awareness to it, ALS was first described in 1869 by French scientist Jean-Martin Charcot. In earlier years it appeared to be affecting the 30s to 40s age group. In more recent years an older age group, but not necessarily.

My good friend Randy Larson, of the Suskovic Jewelers family business, died of ALS in 1989 at age 39. Steve Cornelius was 54 ... Tim Dejardin 47 ... Craig Sullivan was 49 and when Wayne Arnold died July 12 of '05 he was 70. That year their four widows walked to D'Feet ALS and will likely be walking again Sept. 6 at East Silver Lake Park in Rochester -- the seventh local walk.

Slow onslaught

Dr. Sorenson told me ALS comes on slowly. Patients may be living with it for a full year before diagnosis. Such was the case with Lou Gehrig. His batting average with the New York Yankees started slipping a full year before he came to Mayo Clinic for diagnosis in 1939. Historical pictures at Mayo show him even giving batting tips to a group of kids. Lou died of ALS in 1941.

Dr. Sorenson said we have not yet had any new FDA-approved medications in the treatment of ALS. There has, however, in his opinion been significant advances on our understanding of the underlying causes of ALS. I think the most significant discovery has been the identification of the accumulation of an unusual protein called TDP-43 in cases of sporadic ALS. This is the same protein found to accumulate in a related condition called fronto-temporal dementia (FTD). In some people these conditions may co-exist. So I gather from this finding the two diseases, ALS and dementia may be in the same patient. We are all excited to see where the stem cell research goes on this.

D'Feet ALS walk

Dr. Sorenson will be at the ALS walk with four children, as he has been each year. Donna Arnold told me that the group once called "Wayne's Warriors," in which he rode in his wheels to D'Feet ALS, has grown to more than 35 family members of their children and grandchildren and is now called "Arnie's Army." Yes, they all turn out to raise money and awareness but the youngsters who we love to see skipping and laughing have a lot more joy than the widows or the families with a member who may have been recently diagnosed. The July 29 edition of the Post-Bulletin tugged at our hearts seeing the picture of Ann and Eric Peterson and four little ones on their laps. Ann, from Millville, was given a benefit dinner and auction to help with many family expenses. She has ALS.

ALS claimed the lives of the fathers of two Minnesota Twins players, Kent Hrbek in 1982 and Terry Steinbach in 1999. Local teacher Troy Reinke, beloved by his family and kids at Bamber Valley Elementary School, died in 2007 from ALS following many months battling the disease with his wife and family.

How big the problem is

Sue Spalding, state executive director for the ALS Association, tells me there are still two people diagnosed and two die daily in Minnesota. This has not changed over the years. There are 400 people in Minnesota with ALS at any one time. The state goal, comprised of several walks for 2008, is $575,000, an increase of $40,000 from a year ago. Locally, the Rochester Walk to D'Feet ALS goal is $30,000, up from $25,000 a year ago.

There are several fundraisers all over Minnesota in the fight to D'Feet ALS: car washes, walks, runs and just recently, the second annual Troy Reinke ALS Golf Tournament. Local folks numbering over 300 are on schedule to register at 9 a.m. Sept. 6 at the Pavillion at East Silver Lake Park. Bring your pledge cards, enjoy coffee, juice and other goodies and likely special ALS shirts. I'll be there to kick off the walk. No I don't walk. I haven't for many years. But I'm one of the fortunate ones.

I must spell out what it means. ALS (amyotrophic lateral sclerosis) is a degenerative disease of the central nervous system. Life expectancy is two to five years. Volunteers and donors can make a difference. Meanwhile, let us all be thankful we can help in many ways.

Harley Flathers is a longtime Rochester-area broadcaster and historian. Got a comment for Harley? Send it to lifestyles@postbulletin.com or to Harley at Post-Bulletin, P.O. Box 6118, Rochester, MN 55903



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