By Jackie Barry
Jackie Barry lives with her husband Tom in Austin, Texas. She was diagnosed with ALS in 2016 and has been involved with the ALS Association since then. Read her story below.
In early 2015, I began having a speech problem, like a lisp, which seemed to get a little worse when I was stressed or tired. We were in the midst of getting home repairs done, so I thought it would just go away if I ignored it.
In August that year, I saw the doctor about it, and he suspected it could be a stroke or a brain tumor, among other things. I had an MRI, MRA and a carotid sonogram done, which all came back normal. Shortly after that, I was referred to a neurologist, who sent me for a swallow test, after which he believed it was a neuromuscular problem. He then referred me to Dr. Carlayne Jackson at UT Health in San Antonio. Dr. Jackson diagnosed me with ALS in February 2016.
I sort of had a feeling all along that it could be one of the not-so-good neurological conditions and just hoped it was not ALS. My husband, son, and I were upset to receive this news, but were determined to take what comes. I didn’t like that this diagnosis would result in eventually giving up some/all of my independence. But my husband Tom immediately stepped up and committed to helping with housework, cooking and cleaning up, grocery store runs and other errands.
Within a week of my appointment with Dr. Jackson, I was contacted by Jennifer Beckett with the ALS Association in Austin. She came to the house a couple of weeks later and met with us, looked at our home and offered great suggestions for how to adapt as needs become apparent. We immediately felt relieved that we can reach out to such a great group for advice, tips, and support, and to know we are not alone.
I attend Dr. Jackson’s multidisciplinary clinic every three months, and my son Jim is always ready to drive us to San Antonio, which is a big help. Dr. Jackson is a leader in the field of neurology and ALS. She’s doing ALS research, has published research studies, and speaks all over the country. She has a very impressive, well-organized team of therapists, nurses, a dietician, social worker, and more. Dr. Jackson is thorough and answers all our questions. We cannot say enough about how well we are treated by everyone involved in the clinic.
We have been very impressed with everyone we have been in contact with, either at the multidisciplinary clinic, the ALS Association, or respiratory therapists who come to our home once a month to be sure I am using the equipment correctly. We have participated in the Walk to Defeat ALS in Austin for the past two years. We have organized a team and raised about $13,000 to help with everything required to keep the patients, caregivers, and researchers moving forward in the fight for a cure for ALS. The Walk is a great fundraiser for the ALS community. It gives not only those of us living with the condition and our caregivers hope, but also allows friends and family to support the extraordinary work being accomplished on our behalf.
I enjoy attending the other outstanding parties and fundraisers that the association organizes. Earlier this year, at 75 years old, I had my first motorcycle ride on my son’s Harley for the 11th Annual Max’s Ride here in Austin. It was great fun and the weather could not have been better. There was a large number of motorcycles for the approximately hour ride, with a police escort. It was well organized and ended at Scholtz’s Garden here in Austin, with a live band, drawings for door prizes and food and drink.
At this point, I can speak very little, so I write a lot of notes on paper or a Boogie Board, and send emails and texts. I received my first round of Radicava infusions in October this year. I think I am benefiting from them. I feel less wobbly on my feet and more energetic, and my thinking is a bit clearer. Tom and I still walk, but my walks are about half as long as his. I still drive and lunch with friends as often as possible, and we seem to be keeping the house fairly clean and the laundry done, so all is pretty good in our world at the moment.
All of these programs – the multidisciplinary clinic, personal consultations with the ALS Association staff, and events – would not be possible without your financial support. This community is truly unique and has made such a difference for me and my husband as we journey through ALS.
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