“And on the banks, on both sides of the river, there will grow all kinds of trees for food. Their leaves will not wither, nor their fruit fail, but they will bear fresh fruit every month, because the water for them flows from the sanctuary. Their fruit will be for food, and their leaves for healing.” Ezekiel 47:12
This past fall we returned to a cozy apartment in Cluj, Romania for seven weeks of going nowhere. After a crazy summer of sprinting around Europe and Ukraine, we were pooped. We saw many cool places, but moving location every few days sure wears you down.
Getting worn out is one of the negative side effects to travel. But the benefits of traveling for the mind and body were the main reasons we decided to drag my Downs sister, Grace, out on this never-ending world tour.
Jaunting around from country to country these past years has proven effective in many ways.
She’s lost about forty pounds, engaged with lots of kind people, been thrown into the bustle of life by doing everything local, having to walk or hike everyday, smushing into crowded buses and jeepneys, and encountering countless new environments and situations. This has all been amazing for stimulating her brain and keeping her active and healthy.
But she still wasn’t talking, rarely or at all. Her brain would still go through terrible cycles, effecting her mood and behavior. Even with so much stimulation, often she wasn’t engaging with the world around her.
All until recently, when we saw a big change.
Being nomadic is a part-time (edging on full-time…) job. So throwing on the breaks and staying put in one location all of a sudden gave us all a bit of free time.
With that time, my mom dove into research about essential oils and vitamins that could help Grace. She joined lots of ‘Parents of Downs Syndrome Children’ groups and devoured podcasts. She learned of the immense impact sound has on mood and emotional health. Grace lost hearing in one ear due to brain tumors and only retains partial hearing in the other. Hard hearing such as this can lead to depression.
While investigating dementia and Alzheimer’s, my mom recognized many of the telltale signs in Grace- behaviors such as stopping often while walking, putting clothes on over pajamas, and increased stubbornness and confusion.
We already knew she had dementia, despite being only 27 years old. Dementia is becoming more common nowadays, even in Downs teenagers. But what could really be done to help heal the brain?
Romania had to be the best place in the world to do this kind of health research! My mom was able to find food grade essential oils for around $3 a bottle. It was a short walk to a variety of pharmacies and health stores, with mountains of vitamins and the kindest pharmacists too. Romanians, in my experience, are very health conscience. Many want and make their own all-natural lotions, make-up, lip balm, you name it.
None of the products seemed to have a major effect, until Grace started taking an amino acid called GABA (Gamma-AminoButyric Acid.) We’re crediting this with the exciting changes we’ve been seeing.
Just the other night she and my mom and Grace burst out in laughter and kept giggling for the longest time. That was the first time they’ve really been able to laugh so much together in a long time! Grace was cognitively there and genuinely happy. Lately Grace has also been talking (and making sense with what she says!), cooking and cleaning with us, and doing all kinds of tasks like making a sandwich by her own initiative.
Making a sandwich is a big deal? Downs people can hold jobs, like being a waiter though, right?
There’s a whole spectrum to how Down Syndrome affects each child born with it. Some are high-functioning, able to speak articulately and hold a job. But more often than not, a Downs person’s level fluctuates throughout their lifetime. It’s a bit strange and complex, but a Downs person of say 30 years-old will have the maturity of a teenager, but the body of a 50 year-old. Their aging process is 20 years (give or take) faster than usual.
That can mean, and does in Grace’s case, that a Downs person may act as a child or teenager, yet deal with the elderly diseases of Alzheimer’s and dementia.
Throw in challenges such as hearing loss, heart problems, brain tumors, and especially emotional trauma, and you’ll likely get a regressive effect.
When she was young, Grace had the wittiest, driest humor, like the true Bostonian she is. Her memory was amazing too. She learned sign language even faster than our brother.
She doesn’t remember much of her sign language anymore, and with the decline in speaking, so came the extinction of her hilarious jokes.
However she held on to a couple key words that she loves to say. They’re “no” and “stop.” The other night I was taking an online Spanish lesson in the same room as her. I was saying (read: trying to say) something a bit lengthy in Spanish. From the couch she starts yelling, “Stop! STAHP! It’s so aggravating!” Cracked me up. I wonder if she thinks I’m just pretending to speak gibberish or something. My flute practice sessions used to irk her too. No later than a song or two in, I’d hear applause, wait no, her criticisms of, “No! I don’t like it! STOPP.” Really boosted the self-esteem. 😛
Hearing Grace speak (before gaba, but still even now) was a surprise and a blessing. We often measure how well she’s doing by how often she pulls herself out of her own world to take part in what’s around her.
Her lack of communication can cause some serious concerns for us while traveling, as she does not tell us when she needs to use the bathroom, or when she is thirsty or hungry. My mom and I try to keep track between us how much and when she ate, etc. We actually use adult diapers now when taking long trips on buses for example, just in case. Unlike when she was a child, she would be classed now as low functioning.
In the US, Grace had gone catatonic, wasn’t eating, and began slowly dying. Harvard doctors told us our options were doping her with drugs or dropping her off at a nursing home. There weren’t suitable programs for her to go to, and she was too old for school.
And so we left, because although we were told her options were limited and there wasn’t much she could do, we believed in a different truth. We believed there were ways to keep her brain alive and functioning, a way to walk in healing. 🙂
God always makes a way for those who call on him and believe, but doesn’t promise that we will completely understand his ways. We’re so thankful for all the ways Grace has grown and been challenged by backpacking. And we’re so happy to share this great discovery of GABA now too!
GABA is not available in Turkey, so we have not been able to continue with it while here, but will be sure to find it again when we leave, and hope it will continue to help her brain synapses connect so she can live a better, healthier life. (:
We’ve heard that GABA has been able to significantly help other Downs people. Do you have such a story or experience? We hope you’ll be encouraged on your journey with the Downs syndrome person in your life. We’d love to hear from you- about both your struggles and successes!