The past few months have been especially tough for some of the friends
and readers of the BNG newsletter. Pressure sores that won’t heal, hospitalizations,
insurance companies who won’t pay, bladder infections, divorce, separation,
kids
who are thinking and acting outside the box, too much rain and too
little, and loss of family members. The list is longer than I have space.
How we respond to these trying times is a reflection of our character —
that part of us that shows others
who we really are. How we respond to others who are going through the
sausage maker is also a reflection of our true character. In times like
these you find out just how big your heart is — or if you have one. Yes,
Cain, in some fashion, we are all our brother’s keeper. When you see a
“brother” or “sister” wrestling with a tough root or heavy load, don’t
play dumb or turn away. Stop and lend a hand or provide a word of encouragement.
You are planting seeds of hope that you might reap the fruit of someday.
Since the beginning of the year, over 200 of the new Caregivers Resource
kit have been distributed across the country. We are in the process of
assembling 300 more. It appears this material will become one of the most
popular items developed
by BNG. If you are interested in conducting a local caregivers workshop,
give us a call. Included with this issue is a 12-page Plowshares, #29,
on accessible recreation. Ned Stoller has been working on this project
for several months. We
appreciate the help received from folks all across the country. We
hope that you will enjoy reading it and find it useful. BNG is collaborating
with several other midwestern groups to host an Assistive Technology in
the Heartland Conference. The dates are April 25 to 28 in Indianapolis.
The focus of the conference will be educational and include activities
for both
consumers and professionals. There was no Spring issue of the BNG newsletter
because we didn’t have sufficient funds
to print and distribute the needed 13,000 copies. For you who are helping
out with these costs, thank you! For the rest of you who enjoy the newsletter
and would like to see more of it, drop us a note and consider supporting
it financially. Thank you!
Bill Field, Co-Editor
Barry Delks, Co-Editor
Ed Kirkpatrick, Co-Editor
Preparation and publication of this newsletter was made possible by: USDA Extension Service Grant #96-EDFA-1-0033 and the generous gifts from our readers.
In August of 1989, the Buhl family changed forever. Don was busy expanding
the family hog operation and preparing for harvest on their farm near Tyler,
Minnesota. Susan was pregnant with their fourth child, and working part-time
as a physical therapist. Their three children were happy and healthy. Or
so they thought. Oldest son Chris, then 9, had recently started to
stumble when he walked. As a therapist, Susan was a bit concerned.
She had doctors run some tests. The diagnosis was definite and devastating.
Chris had Becker muscular dystrophy, a disease that affects primarily boys
and causes progressive muscle weakness, starting in the legs and gradually
affecting the entire body, including the heart and diaphragm. Later genetic
testing showed that Chris had inherited the disease from Susan, who,
although she had no relatives with the disease, was a carrier.
Once Chris was diagnosed, it was a simple matter to diagnose his younger brother Curt, who also began showing symptoms. Susan knew if the child she was carrying was a boy, he had a 50-50 chance of also inheriting the disease.
How do you cope?
“I was five months pregnant when we found out Chris had muscular dystrophy. How did we handle it? One day at a time,” says Susan. “Our image about what the future would hold for our sons was suddenly changed.” She says the boys took the diagnosis better than she and Don.
That Christmas Eve, a healthy baby girl, Amanda, was born to the Buhls. Don was so relieved the baby was a girl, he went to his Christmas Eve church service and announced the news to a supportive congregation.
Still day to day
Eight years after the diagnosis, the Buhls are still dealing day by
day with the disease. Don keeps busy as an active member and past president
of the Minnesota Pork Producers, and a founding member of The Pipestone
System, a progressive pork alliance in southwestern Minnesota. Handling
the struggles of a changing pork industry pale next to the struggles he
faces
daily at home.
Both Curt and Chris are in wheelchairs, and the Buhls have remodeled their house to accommodate their special needs. The boys get therapy once a week to have their muscles stretched. Although Susan is trained for it, she doesn’t do the therapy. “It hurts, and I’m Mom,” she says simply. Insurance has covered a fair portion of the medical costs, says Susan, “but we are constantly struggling with the paperwork.”
Their small, rural school system was at first reluctant to add ramps and other necessary equipment for Chris and Curt, but eventually made the changes which are mandated by the Americans with Disabilities Act. Budget constraints on small rural schools often make these needed changes difficult to adopt, says Don. “The community has been very supportive.”
Changing Goals
The mental strain on the farm family is hard to imagine. Don tells of one of his saddest days. “I read an article Curt wrote in school about his goals and dreams,” he says. “One of his goals was to one day own this farm. Does that make me sad? You bet it does. I used to work with my Dad on this farm. I’ll never do that with my sons.”
Because Curt loves to help around the farm, Don bought a lawn mower that Curt could operate using just his hands. He needs help getting in and out of the mower, but once on board he is independent to mow as he likes.
Chris has dreams outside the farm. He graduates in the spring and is heading off to Southwest State University in Marshall to major in speech communication. (Sister Anne is a sophomore at Augustana College studying nursing.) Despite everything, the family still manages to have fun. “We take things as they come,” says Don, “and have a lot of good times.” Chris and Curt are involved in band, choir, speech and other school activities. They are also avid sports fans, and enjoy family outings to ball games.
Don is holding out hope for a DNA breakthrough on muscular dystrophy. Until then, he has a message for everyone. “Never take your children’s health for granted.”
For more information on the Barn Builders peer support network for farm/ranch
families with disabilities, contact Breaking New Ground at 800-825-4264.
AgrAbility in Dakota (AID) has been serving farm families in North Dakota for the past six years. In order to better serve its clients, AgrAbility in Dakota (AID) provided an intensive in-service training this past spring for 18 Easter Seal Goodwill staff members. Staff learned more about the AgrAbility Project and how the project assists farmers, ranchers and their families. Staff also learned how to conduct on-site visits with direct assistance from project staff Jerry Phelan, Tom Alexander and George Maher. By having more staff available across the state networking with each other and other agencies, AID hopes to increase and improve the quality of service delivery throughout North Dakota.George Maher AgrAbility in Dakota NDSU Extension Agricultural Engineering Ag Engineering Room 115 PO Box 5626 Fargo, ND 58105 (701) 231-8288 (701) 231-1008 (FAX)
Jerry Phelan AgrAbility in Dakota PO Box 9376 Fargo, ND 58109-9376 (701) 234-9390 (Vc/FAX) (800) 548-1372 (ND only)
Tom Alexander Easter Seal Goodwill of ND 800 12th Ave. SW Minot, ND 58702-1801 (701) 839-4121
Another effort in expanding and promoting AID was the development of
the website. North Dakota farmers and ranchers are taking advantage of
this technology in their farm or ranch operations. The website will be
updated this year to include
educational, technical material and resources from the AID library.
A new section on farm safety issues will be added with the help of George
Maher, NDSU Extension Safety Specialist. These services, along with Breaking
New Ground resources, will provide material and assistance to all who request
it. Furthermore, North Dakota AgrAbility and the Department of Vocational
Rehabilitation have developed a question and answer column called “Disability
Helpline.” This newspaper column is published monthly and addresses rural
and farm disability issues.
George Maher, Extension Safety Specialist, provides Tractor Safety Education
to 180 youth each year. In 1998, the North Dakota Easter Seals Development
Department will be creating and coordinating business partnerships with
various
agricultural-related industries and businesses within multiple regions.
Agricultural industries will be identified, and information will be disseminated
on the AgrAbility Program promoting its services and resources. Once a
business partnership is established, the owner or a representative will
join and become a part the focus group and AgrAbility Partnership committee.
Through developing these business partnerships, revenue will be generated
that will compliment and support the AgrAbility Program.
NEW AGRABILITY STATES ADDED FOR 1998-99
The CSREES USDA has approved and funded four new AgrAbility states. The new projects and contacts are:
Colorado
Robert Fetsch, Colorado State University (970) 491-5648
Barbara James, Easter Seals (303) 233-1666
Delaware
Ronald Jester, University of Delaware (302) 856-7303
Maureen Schweitzer, Easter Seals (302) 324-4444
Texas
Bryan Shaw, Texas A & M University (409) 845-9793
Bill Winscott, Warm Springs Rehabilitation Foundation (210) 616-0526
Utah
Richard Joerger, Utah State University (435) 797-3396
Helen Roth, Options for Independence (801) 753-5353
This is a regular column featuring devices or techniques that offer ideas for “low tech” solutions to problems encountered by farmers with disabilities. Home-built solutions, as well as commercially available items, are highlighted. If you have a solution you would like to tell us about, please send in a description of the item or technique and a photograph. You may also call Breaking New Ground at 1-800-825-4264 if you have a solution to share or have questions about this column.This issue features adaptations that can be made to tractor or combine steering wheels to make them more easily operated by farmers who use a prosthetic terminal device such as a Dorrance hook.
Problem:
Gripping and turning a steering wheel due to
an amputation or lack of gripping strength.
Solution:
Add a clamp-on spinner modification that can
be easily removed and will fit almost any type of steering wheel.
Cost Estimate:
$30.00 to $100.00
Manufacturers:
Mobility Products and Design,
Wells-Engberg Company, Inc.,
Gresham Driving Aids,
New Ability Inc.
Spinners that can be attached quickly to a steering wheel are available from several different companies and also come in various configurations. An amputee or ring spinner is shaped like a doughnut and allows the user to put his Dorrance hook through the hole in order to steer. The traditional spinner knob is shaped like a small door knob and is the most widely used type steering spinner. Anotherconfiguration named the quad fork is U-shaped. The user places his hand into the U and can steer without having to grip. The quad fork is traditionally used by quadriplegic operators. Quadriplegics may also use a tri-pin configuration that has two pins which the operator’s wrist rests between and one pin for the fingers to curl around.
This video, written resource, brochure, leader’s guide and set of master overhead transparencies is a self-contained packet of materials to assist the rural caregiver and the professionals serving rural caregivers. Contact Breaking New Ground at 800-825-4264 for more information.