This week’s Faces Of Ataxia post is brought to us by Ray Luna, caregiver and husband to an Ataxian.
In 2017 when Deb was in her mid 40’s, is when she first started to notice balance issues. She’s always been an incredible dancer and in her early 40’s she had become a huge fan of Zumba (fitness dancing). She had such incredible rhythm and made dancing look so easy so it didn’t take much to notice some obvious signs of trouble. For me, that’s one of the hardest physical aspects of her disease to swallow; it’s robbed her of something that had become such a big part of her daily life.
After a 3-year journey that included countless doctors and specialists, it wasn’t until we found Dr. Tetsuo Ashizawa at Methodist Hospital in Houston, TX. that we got the most definitive diagnosis, SAOA (Sporadic Adult-Onset Ataxia). Currently “Dr. Tee” as he’s known by his patients, is working with us to hopefully rule out a more advanced form of Ataxia known as MSA (Multiple System Atrophy).
Being the primary caregiver for a spouse has challenges that I hadn’t considered until Deb lost the ability to drive. This is when I started to notice how much more I would have to do. If anything needs to be done outside the home, I’m the one that has to do it. Fortunately, our kids have reached an age where they’re much more independent and the fact that they can basically fend for themselves is a huge help. As time goes on and her symptoms worsen my outlook on life has changed dramatically. Talking about plans for the future used to be exciting as we contemplated all of life’s milestones as we looked forward to spending the rest of our lives together. Our future looks completely different now and it’s not fun to think about. I seriously doubt many people, even those who have suffered through disease, truly know how people with Ataxia feel. There’s no cure, no successful treatment, only a life of morbid degeneration. I sometimes get bitter as awareness of so many diseases thrive yet so few have ever heard of Ataxia.
All of this has forced me to drastically limit my social media use because seeing friends posting pictures of themselves doing many of the same activities Deb and I enjoyed so much is difficult for me to process. It’s not their fault, I don’t blame them, they’re going on with their lives and doing the same things Deb and I would be doing had it not been for this disease. Those nice weather days when we would head anywhere to get out of the house and be outdoors; trips to restaurant patios and bars, farmers markets, bike riding, fishing trips, day trips to anywhere was the norm. Sadly, those days are gone, at least to the same degree. Yes, some of those activities are still possible but they require so much more effort that it sometimes sucks all the fun out of it. Even the activities that our family of four used to enjoy doing together have been affected and I sometimes find myself either doing them solo or just the kids and I. That saying, “you don’t know what you’ve got until it’s gone” resonates deep.
I feel for Deb, this has been difficult for both of us but there’s no question that she bears the brunt of all of it with her condition. I catch myself sometimes throwing the occasional self-pity party but try to quickly snap out of it as I imagine what Deb must feel and how truly difficult she has it. I tend to do this on days when I just don’t have the energy to deal with her Ataxia but there are no sick-days for a spousal-caregiver, nope, suck it up and press on is what I usually tell myself. If Deb doesn’t get a day off from Ataxia, neither do I.
On a positive note, I think Ataxia has revealed to me how much I truly love Deb. What likely attracted me to her some 30 years ago was physical. Now much of the physical is gone and you would think the love would fade with it but somehow my love for her has grown. Maybe when physical attraction fades, the beautifulness on the inside becomes more apparent, and on the inside Deb’s gorgeous. I know definitively that if the roles were reversed, Deb would take care of me without complaint, many times that’s’ the fuel that keeps me going.
Thanks, Ray Luna for sharing your story of your wife Deb. It’s inspiring how you’ve stuck by her side during these tough times.
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