Celebrating support: ALS Family Support Group of Ohio to mark seventh anniversary

  • May 28, 2010
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Amyotrophic Lateral Sclerosis (ALS) is a horrible and deadly disease, one that the vast majority of people have no clue about the toll it takes on a person diagnosed with it or their family and friends. Commonly called Lou Gehrig’s disease, ALS attacks the neurons that control motor function, making it so that a person can no longer move their muscles, which end up slowly dying from lack of movement. To help families and patients cope with the stress, anguish and depression is the ALS Family Support Group of Ohio. “On August 8, we will celebrate our seventh anniversary,” said Phyllis Van Horn, founder and director of the ALS Family Support Group of Ohio, “We have lasted longer than most other groups like ours. Most recently, we tried to start an ALS group in Coshocton, which lasted less than a year. What happens most of the time is that those with ALS pass away and the families leave the group. For our group though, the families of those who pass tend to stay and help family members of newly diagnosed patients cope with their new realities. “Our meetings usually start out with a talk or presentation of some kind, and then everyone just gets together and talks amongst themselves. Recently we had a family come in who had a family member newly diagnosed with ALS, having so many people who have had loved ones with ALS makes it nice for when new people come looking for support. I was helping one family member while another member talked with another one, then we switched, both of us offering different views from different experiences in our lives, but both of us united through ALS.” May was designated national ALS month, to help raise awareness of the disease and to spur more activism. Nationally there is one living person with ALS for every 100,000 people, but recently Dover had as many as eight people living with the disease, a startling amount. “I have a large family, and two of my siblings have passed away from ALS,” said Van Horn. “When my brother was diagnosed and passed away, we had no clue what to expect and what to do, but when my sister was diagnosed, we had a much better idea on what to expect and what to do. I wanted to take this new insight and help other people and their families deal with this disease.” Families as a whole struggle when a loved one is diagnosed with ALS, one such family provided some insight to their struggles. The true names have been changed for privacy reasons. “Gary and I are getting confronted more everyday with just how to get through the day…his arms are now totally useless, and just dangle at his sides. It is terrible to see. His speech is getting more slurred…his legs are starting to get weaker, also. It’s hard to believe this was the same guy that just last July 4, was tooling across the lake in a kayak. Now he can’t even raise his arms. I am still shocked that our promising lives have turned out this way, it’s very sad.” The previous quotations come from an e-mail Van Horn provided and has used in speeches she has given at various functions representing the organization that means so much to her. “We help the families of those diagnosed with ALS as much as we help the patients as well. Part of the services we offer is eight hours per month of respite care, where we pay for a home health person to come in and take over for the primary care giver so they can go and do something for themselves, to relax for a bit. “We also provide transportation for those with ALS to go places they might wish to visit. We had one member who wanted to go see his son play with his band, so we made sure he could do that,” Van Horn said. The ALS Family Support Group of Ohio is a non-profit 501(c)3 organization and does not give any money to research, only to support patients and their families. “We try to do anything we can to help our members and even those not members. Many times I’ve spent hours talking to people around the country and even around the world about ALS and what to expect and comforting those who have been diagnosed. It has been stressful at times to be so invested in the support group, and thankfully, members have started taking over some more roles, which makes life easier. But still, people will be diagnosed with ALS, and we will be here for them and their families. That’s what we’re here for, and that’s what we will do for as long as we can.” The ALS Family Support Group of Ohio meets at 7 p.m. on the third Thursday of every month in the Rosenberry Conference Room in Union Hospital. For more information, visit their website at http://www.alsfamilysupport group.com.


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