By John Quinn
Like many people with ALS, I first noticed symptoms several months before I was diagnosed. In December 2015, I was dropping my right foot when I walked and began fatiguing more easily than normal.
I went to multiple doctors and finally saw a neurologist who suspected I had ALS, and he recommended I go to Houston Methodist hospital. In May 2016, I went through a series of tests for two days at Houston Methodist hospital and was given an ALS diagnosis.
It came as a shock for me and my family. I was only 55 years old at the time – healthy, exercising regularly, and free of any family history of ALS. Initially, I was told that because I was young and in really good shape that I could live a long time with the disease. Now the disease is progressing much quicker than I anticipated. Today I really can’t walk, and it’s begun to affect my arms and hands. When ALS starts to affect your arms and hands, it also affects your independence. Each task gets harder and harder to do – dressing yourself, brushing your teeth. I need help with all of these things.
I was fortunate to get involved with the ALS Association of Texas very soon after I got my diagnosis. My wife and I met Jordan and Paulette, the care services team in Houston, at a support group meeting. Support group has proved invaluable. While I attend an ALS multidisciplinary clinic every four months, the monthly support groups help fill in the time between clinic visits. Since ALS is rare, you can feel isolated. But monthly support groups allow you to meet other people who are in your shoes, to get help and advice from others, and to learn what works and what doesn’t from people who have experienced the same things.
Through the multidisciplinary clinic, I was able to participate in an ALS drug study at Houston Methodist hospital from January to June this year. This was a huge benefit of attending a clinic. The majority of ALS research studies are conducted within an ALS clinic, which is why it’s so important to provide more access to clinics to Texans with ALS. And the ALS Association of Texas is working toward that, having established seven clinics across the state in Houston, Dallas, San Antonio, Round Rock, El Paso, and the Rio Grande Valley.
This year, Houston faced a huge natural disaster when Hurricane Harvey hit in August. Two weeks before it made landfall, Paulette (care services manager) urged us to register with our local authorities to let them know that I have a disability and what my potential needs were (power chair, respiratory equipment, etc.). Preparation takes a whole new turn when you’re in a wheelchair. If we hadn’t been connected with the ALS Association, I’m not sure we would’ve known to take these steps to prepare for an emergency.
In May, my wife, daughter, and I attended the ALS Advocacy Conference in Washington, D.C. We heard from great speakers who talked about things like Radicava and Congressional bills that would affect people with ALS. We met with Congress men and women and their staff to educate them about ALS. I could tell this really made a difference for them. Telling my story made it that much more personal. The ability to meet and talk with other ALS patients and caregivers nationwide was also really meaningful for my wife and family. It was a really beneficial experience for us all.
None of these services would be available without your financial support. This is just a glimpse of the incredible impact your generosity can make, not only on my life, but on my family and so many other Texans like me. Thank you.
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