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pALS Newsletter - Fall 2020
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We are so excited about launching this newsletter filled with information, tips, and stories. Part of our mission at Team Gleason is to be a resource and connect with pALS and cALS around the country.
We are not only inspired by our founders, Steve Gleason and his wife Michel, but our team is continuously inspired by others living with ALS.
In this newsletter, you will meet Brian Parker, who is making beautiful artwork using his eyes. You will also meet Dave Clarke, who utilized the seat elevator feature on his power wheelchair to make a pair of cribs for his newborn twin grandchildren.
Emily Kornman, Team Gleason's Speech-Language Pathologist (SLP), will also share some very helpful SLP Tips.
If you would like to share a story about your experience with Team Gleason or how we have been able to support you in your ALS journey and continue to live a meaningful life please email pals@teamgleason.org. Other than that, keep reading, and let’s stay connected!
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Writing about yourself is never easy! However, since this newsletter is kind of my passion project and since so many of you chose to share your story with Team Gleason, it’s only fair if Team Gleason staff members are sharing their stories as well.
Earlier this year, I moved from my hometown of Boston, MA to New Orleans, LA. My story with Team Gleason started in March. In fact, my first day in the office was the day we got the call it was time to work remotely due to COVID-19 - I should have known that this would be the start of a journey like no other.
Throughout my last 7 months, I have been inspired and awestruck by the people I get to speak with on a daily basis. Most recently, I felt compelled to plan a last-minute trip to Lake Catherine after hearing about a local pALS raving about his visits to Arkansas and his camping adventures. It was after that conversation that I jumped on the internet and planned a camping trip 2 days before for Labor Day weekend.
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I was inspired to drive out to the mountains, disconnect for a few days and recharge. I took this time and really looked around myself, absorbing the beauty of nature and noticing all the little things that enrich my life and make it beautiful. It’s an interesting parallel - working for an organization with technology and innovation at the forefront and relying so heavily on technology while also needing the time to disconnect.
In a world where we are constantly working to advance technology, and also living in a pandemic, we rely a lot on technology to keep us connected to others, and there is no question that technology is becoming more and more important in improving our everyday quality of life.
Definitely take the time to read the pALS Highlight about the amazing and talented Brian Parker. I first started emailing Brian and Jen back in July. When I heard about what Brian is doing, it sparked a little creative fire inside of me. I have always enjoyed the arts but never considered myself an artist. Seeing the unbelievable artwork that Brian is making with only the use of his eyes inspired me to start making art. He inspired me to pick up a pencil and start drawing. Since then, I have started making artworks on my iPad and I have not been able to put my stylus down. Brian inspired me to be grateful for what I am able to do, and take advantage of what I have. He encouraged me to try things that I never thought I was good at.
All in all, I think it is evident by now that Team Gleason is more than just an organization. Team Gleason is a support system for anyone with any connection to ALS. Team Gleason is constantly looking to improve the quality of life of those living with ALS, and we are excited to share these stories with all of you.
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pALS Highlight: Brian Parker (Eyegaze Arts)
Brian Parker was diagnosed with ALS in 2011. Brian is married to Jen Parker, and together they started a blog called Strength of Love.
“People often ask me what inspired me to create art. That’s a hard question to answer, as I don’t really see myself as an artist.” Prior to his ALS diagnosis, Brian was an audio engineer and producer.
Brian mentioned that his decision to make art actually comes from boredom. “While creating shapes to make a drawing to communicate an idea to a friend, I realized there was so much I could create just using shapes.”
Jen said that one day, Brian sent her a drawing he did, and then they just kept coming. Brian makes beautiful artwork, using the only thing he can move, his eyes.
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“The first designs were abstract pieces doing just that, taking small shapes and putting them together to create a design, and that evolved into using the shapes to create a larger object. It just took off from there. “Before I knew it, I’d done over a hundred designs!” said Brian.
Brian meticulously guides a virtual paintbrush by using the movement of his eyes on his Lenovo laptop with a Tobii PC Eye Mini attached. Brian also mentioned that he likes to use PaintDotNet, which is a free application, and Microsoft Paint3D, which comes with Windows.
“As hard as some days can be, I try and stick to what I’ve said for so long, which is that I just choose not to let ALS define me. I look for purpose and joy in each day”. And for Brian, that also means keeping things new and exciting.
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pALS Testimonial: Dave Clark
I was diagnosed with ALS in 2018. Since then my progression has been relatively slow, so far, it has mostly affected my balance, gait, and speech. I’m a retired firefighter and prior to the onset of symptoms I was a very active mountain rescue volunteer, skier and cyclist. Losing my leg function put a stop to those activities but it opened time for me to pursue woodworking, a long-postponed hobby. I’ve rearranged my workshop to allow wheelchair access to all of the tools but most of them are designed to be used while standing. That’s where the elevator comes in. It’s allowed me to safely and effectively use tools and machines that would be literally out of reach with a standard chair.
My other newfound hobby is being a Grandpa. Our first grandkids, twins, were born in April. My Daughter Annie (not the twins’ Mom as she is busy enough) and I have been busy building a pair of cribs. It has been a great project because it has allowed us to spend time together while creating a family heirloom. The Permobil elevator provided by the Gleason Foundation has facilitated all of this and I’m happy to be able to share this story to show our gratitude. – Dave C.
📷 Laurie Clarke (Dave’s wife)
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Featured Low Tech
A voice amplifier is a form of low-tech assistive technology. It is essentially a portable amplification system that can reduce fatigue and allow you to continue speaking longer throughout the day.
Who would benefit?
A voice amplifier is typically introduced as a strategy to preserve your natural speech effectiveness.
So what are the signs that I would benefit from this device?
Individuals with ALS may notice that in some situations they become more fatigued, or tired and their speech may either become more slurred or it is just too tiring to speak. This could be due to the increase in the muscular effort they are using throughout the day to compensate for reduced muscular strength.
In simpler terms, a voice amplifier reduces the amount of effort on your part by increasing your volume.
Talk to your Speech-Language Pathologist if you notice that you are having more difficulty with speaking. This doesn’t always mean you notice your speech is slurring; we find it beneficial also for people who experience these situations:
• They have difficulty communicating in loud or crowded environments, such as a restaurant or during family parties
• They don’t speak as much as they used to because they quickly become tired
• They may be asked to repeat what they said multiple times due to their speech being quieter than it used to
• They don’t speak as much at the end of the day due to being so tired from talking all-day
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Swallowing Tip
Bulbar dysfunction is seen in more than 80% of individuals with Amyotrophic Lateral Sclerosis at some point. This could be dysarthria (motor speech disorder affecting how your speech sounds) or dysphagia (swallowing disorder). Since this occurs so frequently it is good to know the signs of difficulty swallowing and when to see your Speech-Language Pathologist.
Common signs/symptoms of difficulty swallowing:
• Avoiding certain foods because you notice they’re more difficult to swallow
• Weight loss or dehydration
• Food/liquid getting stuck in your cheeks or left in your mouth after swallowing
• Pain when swallowing
• Coughing with or after meals
• Feeling like food is getting stuck in your throat
• Change in the sound of your voice after eating(sound gurgly)
• Food/liquid spilling from your mouth
• Increased time to complete a meal
If you experience any of these symptoms, notify your Speech-Language Pathologist and it may be time for a swallow evaluation.
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Virtual Zoom Gatherings
Join a Team Gleason Virtual Zoom Gathering for both those living with ALS and their caregivers. If you would like to be invited to participate in one, please email kelly@teamgleason.org.
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Participate in Google's Project Euphonia
For millions of people around the world who are living with dysarthria, face-to-face communication can be very challenging. Using voice-activated technology can be frustrating as well. Project Euphonia, a Google Research project, is focused on improving how such systems recognize impaired speech.
Google needs to collect samples of impaired speech.
Now is your chance to make an impact and help ensure that future individuals can maintain independence through voice-activated technologies. Qualified participants will receive a $300 Visa Gift Card from Google.
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Choose to Reuse
To return or donate equipment please contact returns@teamgleason.org so we can best assist with the logistics of the return or donation. If we are able to accept the donation then Team Gleason will email prepaid shipping labels for the boxes.
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Soul To Soul with Steve Gleason
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