Testimony of Susie Means
Alzheimer Advocate
Massillon, Ohio

Presented to the Subcommittee on Labor, Health & Human Services, and Education and Related Agencies Committee on Appropriations
United States Senate

March 30, 2004

Good morning Chairman Regula and other members of the Committee. It is an honor to be here before you this morning representing the Greater East Ohio Area chapter of the Alzheimer's Association.

I am in Washington today with my husband Don who was diagnosed with Alzheimer's disease four years ago at age 58. On behalf of my entire family and the nearly 14,000 other Alzheimer families in eastern Ohio, we are asking you to commit an additional $40 million in Alzheimer research funding this year for clinical trials to identify treatments that can slow or halt the onset and progression of Alzheimer's disease.

Prior to his diagnosis, Don was the head of accounts payable and receivable for Republic Steel. He was such a great supervisor that when he lost his job in March 1999 some of the other staff in the department quit because they did not want to work for anyone else. We assumed that Don's layoff was due to a downsizing at Republic Steel. I didn't know that he'd been having trouble at work. I suppose I should have suspected problems at the office since he was exhibiting strange behaviors at home. He was constantly forgetting his car keys. We would leave the house to run errands and he would get in the car, drive off and leave me standing in our driveway. One day he got lost for eight hours. He drove almost to Pennsylvania before turning around. I still don't know how he got home that day although he says he remembered that he needed to drive west.

Over the next ten months, Don was dismissed from four different jobs. After he lost the fourth job I insisted that he see our family doctor for a check-up. The doctor gave Don a series of tests including one where Don was asked to count backwards from 100 by groups of seven. Don got to 63 and couldn't go any further. The doctor recommended that Don go in for an additional round of neuropsychological testing and in August 2000 we saw a neurologist. After ruling out a stroke and other causes of dementia, the neurologist gave us the terrible news that Don had Early-Onset Alzheimer's disease.

The diagnosis finally explained Don's troubling symptoms but it also left us shocked, scared and unsure about the future. How would we pay the bills if Don couldn't work? What would happen to Don as the disease progressed? We were lucky to find two guardian angels to help us through one of the most challenging times in our lives. Heidi, the wonderful caseworker in Representative Regula's Canton office got us through the maze of applying for Social Security disability benefits. The Canton chapter of the Alzheimer's Association educated us about Alzheimer's disease and answered many of our questions.

Don got a job stocking shelves at Bordner's, a local grocery store, to make ends meet. He eventually qualified for Medicare, which covered some of his health care bills. I continued working in a local chiropractor's office so I could keep my health benefits. I cut back to 33 hours a week, the minimum I could work and still qualify for the office's health insurance plan. We also lived off of our savings for 18 months until that money was gone. Things were going fairly well until right before Christmas when Don got in a car accident. He had to give up driving after the accident and lost his job at the grocery store as a result. Losing his driver's license and his job came on top of losing his position at the assistant coach of the girl's basketball team at Canton Central Catholic High School. The head coach had to let Don go when he couldn't remember the names of the girls on the team or the plays.
The last few months have been very difficult. Don's Alzheimer's is progressing and the Alzheimer drugs he's been on since the diagnosis are not working as well as they once did. We have some samples of the newest Alzheimer drug but we do not know what we'll do when the samples run out in a few months. The drug is very expensive and we cannot afford it on our limited income. I only work three days a week but I am filled with fear every time I leave the house, not knowing what I'll find when I return. I work two shorter days and one long day. My 88 year-old mother who suffers from macular degeneration stays with Don on my long day. I have developed a system of leaving meals in the crockpot for Don on the days that I work so I can be sure that he eats. I am also blessed with a wonderful neighbor who has been a huge help.

Mr. Chairman, I am grateful for the money that this committee has generously allocated to the National Institutes of Health for Alzheimer research. From our involvement with the Alzheimer's Association, we know that real progress has been made and that significant advances in medical research have resulted in new and promising treatments. We have many reasons to believe that a world without Alzheimer's disease is within reach. In order to realize the goal of stopping Alzheimer's disease, we must ensure that the federal government maintains its commitment to fund promising research. Don and I know that your job is especially difficult given the current budget situation but we're here today to ask that you stay the course. We cannot afford to back down now. Don has already lost four aunts and an uncle to Alzheimer's. I'm scared for our two grown children who wonder if they too will get Alzheimer's disease one day. Don and I have faced good times and bad throughout our 37-year marriage and we are determined to beat Alzheimer's disease together. The $40 million in additional funding for Alzheimer research that we are asking for is the key to helping us win this fight.

Don and I thank you again for giving us the opportunity to be here today and are happy to answer any questions you may have.

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