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Marathon One Step in Couple’s Support of ALS Research
[Noozhawk’s note: Second in a series on Fran and Hal Finney, and their determination to compete in Sunday’s Select Staffing Santa Barbara International Marathon. Click here to read the first story in the series.]
Almost immediately after receiving his diagnosis of Amyotrophic Lateral Sclerosis, or “Lou Gehrig’s disease,” Hal Finney registered with the local Muscular Dystrophy Association.
The Santa Barbara office serves the Tri-County area, and its services are free to clients with one of 43 diseases. For ALS clients, the MDA offers clinic visits to UCLA and Stanford, an ALS support group, and assistance with getting wheelchairs, communication devices and anything else they may need.
Hal and his wife, Fran, have organized a fundraiser to raise money for research through the MDA. The organization is the biggest contributor to ALS research, MDA executive director Parvaneh Givi said.
“It’s so nice to have people like Hal and Fran who take ownership,” she said.
Working with the Santa Barbara International Marathon, the South Coast ALS Team has raised nearly $4,000 toward its $10,000 goal.
Hal, who was diagnosed in August, was training toward a Boston Marathon-qualifying finish time when he began having difficulty training. Even in August, he thought he may be able to run the Dec. 6 marathon, but he can no longer run.
“It’s a hard adjustment, but it’s one you have to do if you’re going to get through this,” he said. “It’s to … accept that your body’s going to deteriorate but your mind will be intact, and in a way you have to see that as positive.”
In recent weeks, he’s gone from jogging a few miles to walking with a slight limp, but he will cross Sunday’s finish line nevertheless. Fran will run the last leg of the race and hand off the tracking chip to Hal, who will carry it across the finish line.
They hope to be joined by a large group of people, including friends, family and other members of their ALS support group. The last two miles travel by Cliff Drive and end near SBCC.
The fundraiser will benefit ALS research, but it’s also meant to advocate for ALS awareness in the community, Fran said. She plans to make the marathon fundraiser an annual event, whether or not Hal can physically be there.
ALS causes muscles to weaken and stop working, eventually causing paralysis. It has no cure, and treatment at this point is anything clients want to try, Fran said.
The Finneys are trying to stay healthy, and Fran, a physical therapist, has been using massage to make Hal’s muscles feel calmer and stop twitching.
Patients who go to clinics with specialists for various aspects of ALS, such as the UCLA clinic the Finneys frequent, have shown an increase in survival, Fran said.
Having so many knowledgeable people in one place is very reassuring, Hal said.
“I’m learning to separate a person’s body from a person,” Fran said. “I’m a very physical person, and have a very physically focused job, and it would be really hard for me to be separated. But the body is just a body. It’s not a person, and I’m really learning that.”
Andi Sass, the MDA’s health-care services coordinator, created the ALS support group in September, and the Finneys spoke highly of her energy and positive attitude.
She makes sure that when people need something, they get it, Fran said. “When you need a feeding tube, you need it now,” she said.
The support group meets at 2 p.m. the first Wednesday of each month in the activities room at Goleta Valley Cottage Hospital, 351 S. Patterson Ave.
When the Finneys went to their first MDA event, they felt awkward because Hal wasn’t showing many effects of the disease. They were in disbelief for quite awhile after the diagnosis, but now have no doubt the diagnosis is right.
“It’s real now, because I see Hal losing his strength in different areas,” Fran said. “It’s almost on a daily basis — certainly on a weekly basis there are changes.”
They plan to travel in the next few months while they can. What really limits a person from traveling is being on a respirator, since people confined to a wheelchair or having a feeding tube can still travel relatively easily.
They’re headed to Colorado for a ski weekend in December and hope to visit family around the country.
Hal, an excellent skier, doesn’t know whether he will be able to ski in two weeks, but he said he’s excited nonetheless to get to the snow and have a family vacation.
As his condition has changed, the list of things he would like to do also has changed. He said he hopes his decades of experience will help him ski, but he wouldn’t mind playing in the snow and watching everyone else.
“I used to watch him and think he looks like he’s dancing in the snow, he’s so graceful,” Fran said. “But it’s OK, he doesn’t have to dance in the snow — you can play in the snow.”
Their positive attitudes are better than the melancholy alternative, they said. “You have to find things you can still enjoy and be happy with,” Hal said.
He also hopes to create something unique for the world in his field of software and cryptography even after the disease becomes more advanced.
Fran sees it as her purpose now to keep Hal around so he can do that. “I never did have much of a purpose anyway,” she said with a laugh, her eyes welling up.
There are ways for people with advanced ALS to communicate, such as with computer interfaces, and the disease doesn’t diminish mental capacity at all. “A brilliant person remains brilliant,” Fran said.
She plans to keep running for Hal and take care of herself so she can take care of him.
Fran also has been hired part time by the MDA to make annual home visits to ALS clients to check on their status and provide advise on home modifications.
“ALS doesn’t just affect a person, it affects a family,” Hal said. “Everyone has their life very, very changed by this particular thing. Someone like Fran, the spouse of a person with ALS … it’s going to be just as much of a change in her life as in mine, because taking care of me is going to be practically a full-time job once I get disabled.”
The South Coast ALS Team for the Santa Barbara International Marathon is still taking donations for MDA ALS research and will walk the last two miles of the race with Hal and other supporters. They’ll be easy to spot — in yellow T-shirts.
— Noozhawk staff writer Giana Magnoli can be reached at .(JavaScript must be enabled to view this email address).
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» on 12.01.09 @ 07:04 AM
what wonderful soul mate’s you are to each other. my prayers are with you both
» on 12.01.09 @ 05:17 PM
I will be running the marathon this year for the first time and these two have really helped put things in perspective for me. You realize that after all the training, after the miles that you put in, and the effort that it takes to prepare for such an event, you have absolutely nothing to complain about. I wish Hal and Fran the very best of luck in dealing with this disease, and I will be on the lookout for the yellow shirts on race day. God bless…
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