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The Jane Gilbert Interview (Page 1 of 2)

An Interview with Jane Gilbert
Former President and CEO - ALS Association

Jane Gilbert HeadshotGary Barg: Our family caregivers are dealing with all sorts of healthcare issues. But I find one of the most challenging is when the caregiver’s loved one is living with ALS, commonly known as Lou Gehrig’s disease. Can you tell me the importance of family caregivers to people living with ALS and what the Association does for them?

Jane Gilbert: We have a series of recommendations that we certainly provide for people who are newly diagnosed. The thing that we recommend they do as quickly as they can is get to a certified center and start the process of working with good qualified clinical professional people who can really help not only the person with the disease, but their caregiver, as well. The clinical support not only improves the quality of life for the patient and their family, but it also extends the quality of life. We have 34 certified centers across the United States and many other clinics that we work with that provide not only that support, but also educational information. 

You know, when someone is newly diagnosed, there’s always that shock factor of Oh, my gosh, now what? But there are many, many opportunities for people to get help from the ALS Association and from other organizations, as well, dealing with ALS.

Gary Barg: We’ve been doing some work in the magazine with the ATSDR’s National ALS Registry Web site, the government registry. Are there any clinical trials showing any hope for advancement in supporting this disease?

Jane Gilbert: We have great anticipation—I guess that is the best way to say it—that one of the clinical trials now in place may provide some help and some hope for those people living with ALS. As you know, we provide funding for researchers all over the world, literally, who are working on ALS. And there are a number of drugs which are currently in trial and any number of potential drugs that may come to trial in the next year or so.

Gary Barg: We’re thrilled that the ALSA chapters have joined us at our Fearless Caregiver Conferences when we have them in chapter cities.  If you’re a family caregiver with a loved one living with ALS, and you go to a local chapter, what would you expect? What kind of support are you looking for? What do they offer?

Jane Gilbert: The chapters across the United States offer, number one, support for the caregivers. There is that emotional support of letting you know you’re not in this alone. And most people are not familiar with ALS.  So the first and most important factor with the newly diagnosed person is the educational component of letting them know what help there is. Our chapters offer respite care and educational components. There are all kinds of loan equipment, transportation opportunities, and professionally facilitated support groups that provide an opportunity to share best practices. We have programs on the Web once a month that deal with specific areas of caregiving. 

Gary Barg: Tell me about the value of support groups for caregivers of people living with ALS. Have you found that to be a valuable tool?

Jane Gilbert: We find it’s just one of the most valuable things there is in support of those people, particularly the caregivers. As you can imagine, this is an exhausting process for the caregiver.  They learn best practices, they hear about ways of coping, they learn that they’re not in this alone. And so we, all the time, just get tremendous feedback from support groups. 

Obviously, they’re not for everybody. But those people who attend the support groups really do seem to have an enhanced quality of life and certainly feel as though they are getting a tremendous amount of respectful help and compassion from others who either are going through the same thing they are or are caregivers who have come back after the death of their loved one. These people will still maintain an active role in the support group. And that’s been an incredibly helpful component. I hear every day from people who say this support group is the best thing I could have asked for.



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