Iowa AgrAbility

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IN THIS EDITION:
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CARM'S FRUSTRATIONS!
SUPPORT FOR CAREGIVERS
CLIMBER WITH DISABILITY MARKS ANNIVERSARY
RESOURCES TO KNOW ABOUT
UPCOMING EVENTS
PERSONAL PROFILE: SANDY STRUM
QUOTE OF THE MONTH

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CARM'S FRUSTRATIONS!
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How many of you are frustrated with Assistive Technology? I am dealing with a very irritating situation right now. In 1996 we found a used '89 E-150 van that had a lift in it. It needed some adaptations and Voc Rehab was able to help. While it took forever for these adaptations to get done, I have now had four years of pretty good driving, except once in Mason City when we were going to a graduation at NIACC. Got there and stopped at the mall to use the restroom. The lift doors WOULD NOT OPEN!! Everett had to manually open them. Because we had to go from there to Waterloo to have this fixed IMMEDIATELY, we missed the graduation! The company that put in the cables that open the doors had made them too short. They were cut in half when the doors closed. GRRR! Another time I had a bad oil leak from the lift arms that took a while to fix properly. GRRR! Now, for some reason my doors want to JERK -- sometimes worse than others. I'm told it is the air waves. HMMM!
DON'T REALLY THINK SO!
Now, the biggest frustration of all. The hand controls started sticking a while back. One morning I started for work and my van could only go about 35 MPH. We took it to Waterloo. They worked on it and told us that it was caused by a crimp in the gas line from the carburetor. O.K. It worked all right until last Monday on the way to work -- 35 MPH. FRUSTRATING!! I turned around and came back home. Everett went out, held the plate and pulled the hand control down. Worked fine that day.
Next morning I tried what Everett had done before I started out. Fine -- FOR 5 MILES! I continued on to work SLOWLY. Coming home -- FINE.
Yesterday morning I was alone at work so I knew I had to get there. Did so VERY SLOWLY! This morning I turned around and came home. My arm gets too tired dealing with it. I have a call in to a company out of LaCrosse that works with accessible vehicles. They are even willing to come to our home. It's a good thing because with the problems I am having, I'd NEVER GET TO A PLACE TO HAVE IT FIXED! FRUSTRATIONS!!!!
If any of you have had similar problems, please contact Carmen at:
cschacht@powerbank.net or Carmen Schacht, 6697 345th Ave., Cresco, IA 52136 (CS)

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SUPPORT FOR CAREGIVERS
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Illness or disability has an instant effect - it puts you and your loved one on an unfair footing. You are forced to undergo a transformation of roles, and this new status means that suddenly you each view your life from very different perspectives. You can't help bringing your own temperament, fears, abilities, and perceptions to the role of caregiver - those are, after all, the defining qualities of your personality. But you and your care recipient, even though you face the same problems, may find you now arrive at very different solutions.

What happens when your sense of how things should be handled doesn't jive with that of your care recipient? As many caregivers have discovered, what happens is a period of conflict that can range anywhere from merely unpleasant to severely destructive. This article explores some of the different, and often contentious, behavior patterns that occur between caregivers and care recipients, and looks at ways of overcoming the tensions they create.
Source: "The View from Your Corner" by Pat Kaufman (Caregivers & Care Receivers. A Difference in Perspective, reprinted from TAKE CARE! Self Care for the Family Caregiver, a publication of National Family Caregivers Association, 9621 East Bexhill Dr., Kensington, MD 20895. Ph: 800-896-3650) (CS)
You can visit the National Family Caregivers Association (NFCA) at the following web site: www.nfcacares.org/. If you want to become a member of NFCA, you will find a form on that web site that you can print off and mail in with your membership fee. (LL)

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CLIMBER WITH A DISABILITY MARKS ANNIVERSARY
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The first paraplegic climber to scale El Capitan in Yosemite National Park reached the top of the 3,200-foot peak again -- 10 years later by hoisting himself six inches at a time along a more difficult route than he previously completed. Mark Wellman, 39 of Truckee, CA, has had only partial movement in his legs since a 1982 climbing accident. This time he tackled the tougher "Nose" route of the mountain peak. Wellman said his message to other people with disabilities was "to climb whatever mountain that is the barrier in their life. And that can be anything." (Taken from AAPD News,Vol 1(3), September 1999. AAPD is the American Association of People with Disabilities.
Web address is:
http://www.aapd-dc.org (LL)

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RESOURCES TO KNOW ABOUT
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As part of its National Women's Health Information Center, the Department of Health and Human Services has established a new resource center for women with disabilities. You can find information on health issues for disabilities, information on federal and state laws and regulations that protect disabled citizens, news about medical research, and statistical information on disabled women. The site can also link you to the unique need and concerns of minority women with disabilities. The web site is: www.4woman.gov (CS)

A service provided at no cost is the Iowa State University Extension's Farm Financial Planning Program. This is a confidential service provided to individuals who want to gain a better understanding of their financial condition. Contact your local county ISU Extension Office to set up an appointment or obtain a "Farm Financial Planning Program" (PM 1775) brochure.
Contact: Mike Duffy, Department of Economics (515) 294-6160, mduffy@iastate.edu
Website: http://isufarmeconomyteam.org/services/ffp.html (LL)

The Easter Seals FaRM Program has available a Mobile Rural Assistive Technology Unit that can construct needed assistive technologies, onsite. For more information contact Easter Seals FaRM Program, P.O. Box 4002, Des Moines, Iowa 50333, or call (515) 289-1933, extension 251. (LL)

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UPCOMING EVENTS
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Freewheeler's Peer Support Meeting
Saturday, November 13, 1999, 1:00 p.m.
FAMILY POTLUCK - bring a dish to pass; we will provide table service, coffee and milk.
Geneva United Methodist Church (on highway 3 turn south on county
road S-56; from Hiway 65 turn east on county road C-47).
COME JOIN US! Be sure to invite family members or friends! (CS)

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PERSONAL PROFILE OF SANDY STRUM
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Sandy has had MS since the fall of 1990. She tells her story. I started out using a cane to help me keep my balance, and have progressed to the point of presently being in a wheelchair full time. Every day presents new challenges. We face them one day at a time. My husband Lon and I have been married 26 years, and have 13 children. None of our children are "homemade." Twelve of them are adopted. We have one foster child. We often take care of foster kids
and have been Mom and Dad to many over the years.

We farm 900 acres of corn and beans and raise ostriches and hogs. I say "we" because I used to drive a tractor and combine, and do chores right along with Lon. I am physically unable to do those things now, but my heart is still there. That is probably one of the hardest things I've had to deal with. Sometimes I feel so worthless and very much left out when I see those things continue without me. Another thing I struggle with, as I'm sure many of you can
understand, is running into people that I knew before I was in my present situation--people who knew the old me "before." Sometimes I just want to crawl in a hole.

When I get a grip, I remember that life goes on and I need to make the most of it, AND there are many things I CAN do. Maybe I can't do the same things I used to, or maybe I just can't do things the same way I used to, but I can still do things and have a meaningful life. My husband and children have been wonderful! MS, or any other disability, doesn't just happen to the person with the disability. It happens to the entire family and affects the entire family. My
husband has stood by me through 20+ years of not knowing what will happen next. He and the kids have been wonderful about making sure that I am included in most everything they do and making sure there are accommodations for that to happen.

We happened to come upon Tracy Keninger, Easter Seals FaRM Program Director, and Mary Yearns, AgrAbility Program Director, quite by accident. They have all been a great help to both Lon and me. Tracy and Mary came to our home to give us ideas on how to make our home as accessible and convenient for me as possible. They also quizzed me and searched for ideas to help in any other way. They came up with some good suggestions. I was able to borrow some equipment from Easter Seals to make our home more accessible. Tracy directed me to a program that helped us get a van with a ramp for the wheelchair that has helped me be as independent as possible again.

Tracy has also been a great moral support as she occasionally stops to see how things are going and to help our Peer Support group. Everything has been greatly appreciated! (CS)
Read other AgrAbility stories on the AgrAbility 
Web site: www.exnet.iastate.edu/Pages/housing/other/agrability/services/peer-support.html (LL)

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QUOTE OF THE MONTH
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People who don't know where they're going usually wind up
somewhere else.
-Joel Delman's "Smart Cookies" (CS)

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IOWA AGRABILITY - A joint effort of Iowa State University
Extension and the Farm Family Rehabilitation Management (FaRM)
Program of the Easter Seal Society of Iowa. The program can help
farm family members with a disability meet specific needs.

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This electronic newsletter from the Iowa AgrAbility Project will be sent monthly to AgrAbility families and other interested individuals. Please send comments and suggestions to:

E-mail: agrability@exnet.iastate.edu
Phone: Iowa State University Answerline at 1-800-262-3804
TDD: 1-800-854-1658.

...and justice for all. The Iowa Cooperative Extension Service's programs
and policies are consistent with pertinent federal and state laws and regulations on nondiscrimination regarding race, color, national origin, religion, sex, age, and disability.