by Emily Brechting, Ph.D.
For many of us, ALS is something we think about abstractly with little awareness of the realities of ALS. Perhaps we call to mind famous athletes like Lou Gehrig and Steve Gleason or the remarkable scientist Stephen Hawking. But for those in the ALS community, that abstract concept becomes concrete when the diagnosis is given to us or someone we love.
For me, ALS became personal four years ago when my friend Scott received the diagnosis. An avid distance runner, his was experiencing an odd cluster of symptoms initially attributed to a running injury. As the alternative explanations were ruled out, Scott and his community of supporters were confronted with those life-changing letters: ALS.
The Susan Mast ALS Foundation rallies around patients and families as they process the diagnosis and navigate the progression of the disease. Our staff provide guidance, equipment, resources, and encouragement to families in our community. It’s personal for us too.
June is National Safety Month and I want to touch on safety in your homes and Severe Weather safety.
PLEASE BE PROACTIVE AND NOT REACTIVE!
Safety at Home -
Severe Weather Plan
What if you fall and need assistance?
by Pam Van Vliet, Care Services Manager
Spring has Sprung – we happily see all the new growth popping up all around us. This is a great time for pALS and families to revisit your needs and what additional support you may need.
Monthly support groups are a great way to grow in your knowledge of what is available from SMAF and learn from others on how they maneuver around the obstacles of living with ALS. A healthy support system includes a group who can relate to your circumstances.
Other benefits of meeting with a support group:
Caregivers, this is a great way to connect with others who share the same feelings and frustrations. Sometimes just knowing you are not alone is a growing experience.
Support groups at this time are via Zoom and by email invitation only. If you do not receive the email invites and would like to give one a try, email Pam at email@example.com.
by Emily H. Brechting, Ph.D.
When working with a therapist or counselor, the sense of connection is vital. With one ALS patient, it was clear that our mutual love for gardening would be that connecting point.
Last spring, I began working with an ALS patient—let's call them Sam. With in-person gatherings cancelled due to COVID, we began meeting online. Sam was grappling with the realities of an ALS diagnosis. They were experiencing anger, frustration, and disbelief while continually adjusting to the relentless progression of the disease. Sam was struggling and decided it was time for us to work together.
In one of our initial meetings, Sam lamented their inability to spend time outdoors due to mobility challenges and COVID restrictions at their care facility. Sam shared about their decades-long passion for horticulture. Sam deeply missed the feel of dirt on their hands, the smell of freshly turned earth, and the sheer pleasure of cultivation.
At that same time, my family and I were partnering with friends in an ambitious project for a mega garden. An open field became a 50x150 foot plot of tilled land. Raised beds with drip irrigation soon followed. Raspberries, blueberries, blackberries, and asparagus were ordered and planted. Tomatoes, beans, cucumbers, zucchini, broccoli, peppers, beets, rhubarb, peas, lettuce, kohlrabi, brussels sprouts...this was no ordinary garden. It was a quarantine enterprise!
I shared with Sam about this family project and they were enchanted. Soon, it became part of our routine. At the start of our meetings, I’d provide a quick update on the garden’s progress and let Sam see garden photographs by sharing my screen. Sam was delighted. In fact, when I forgot to take new pictures before a meeting, Sam let me know that this should not happen again.
After a few minutes of garden talk, we’d transition to "the work” of our time together where Sam shared struggles, practiced coping skills, and processed their concerns. And then to close our meetings, Sam would make suggestions about vegetable varieties to consider, strategies for dealing with garden pests, or flowers they thought would make a nice addition to our efforts. Through the common language of gardening, a connection was made.
Sam’s hands never touched the soil of our quarantine garden but their fingerprints were all over our bountiful harvest.
By Natsumi Asanuma, M.S., CCC-SLP
Voice banking is one process to digitally preserve your voice in case of speech or voice impairment requiring the use of a speech generating device in the future. There is a possibility of decline or loss of speech with an ALS diagnosis, and many people with ALS (pALS) choose to bank their voices before experiencing any speech changes to preserve this part of their identity. Voice banking is offered by several different organizations and companies, and while the overall process is similar, features and prices vary. Recent updates to voice banking technologies may make it easier or faster to create a custom synthesized voice for those without speech symptoms or make it possible for digital voice creation for those already experiencing speech/voice impairments.
Fewer phrases to record: Voice banking services typically have a minimum number of phrases you will have to record in order to create a custom synthesized voice. As technology has improved, some companies have reduced the number of phrases required to as few as 30-50 phrases (e.g. The Voice Keeper & Acapela My Own Voice). These options may be good for those who need to prioritize time and vocal effort/energy. Most services have options to record a greater number of phrases to enhance the likeness and quality of the voice as more voice data is input into the creation of your custom voice.
Familiar Recording Equipment & Software: Most voice banking services now offer web recorders, which make it possible to make your recordings from your computer’s Internet browser, instead of having to download software. While most services require or recommend using a USB headset microphone to record, The Voice Keeper has an option for recording on an iPhone or iPad through their app. The Susan Mast ALS Foundation offers our patients loaner recording equipment and the assistance of a speech language pathologist (SLP) free of charge as well.
Custom Phrases and Personal Message Banking: Even a custom synthesized voice is still an artificial voice, which means that some words and names may not be pronounced correctly or sound “computer-like.” To help overcome this barrier, some services now offer the option of recording custom phrases that you come up with yourself, to improve the accuracy of personally relevant words (e.g. ModelTalker & Acapela My Own Voice). Message banking is another process of preserving custom phrases in just the way you usually speak them. If you already completed message banking, some services offer a custom synthesized voice creation based off of high-quality message banking recordings (e.g. Acapela My Own Voice, The Voice Keeper, & Speak Unique Voice Design). The Jay S. Fishman ALS Augmentative Communication Program has a great explanation on this process they call “double-dipping” here.
Custom Voice Options for Those with Speech/Voice Changes: If you are unable to complete the traditional voice banking process due to speech/voice impairment that is already present, it is always a possibility to ask a family member or friend with a similar voice to yours to bank their voice for you to use. However, some services may be able to match you to a voice similar to yours from a donor (e.g. VocalID BeSpoke Voice) or voice bank with impaired speech (e.g. SpeakUnique Voice Repair) or design a voice based on chosen characteristics (e.g. SpeakUnique Voice Design).
When selecting a voice banking service, you will want to think about your individual priorities, goals, and current voice/speech quality. Consult with your SLP to decide what would be best for you. You can also review a recently updated chart of voice banking services and features here. The Susan Mast ALS Foundation offers our patients education and loan equipment on voice and message banking with an SLP. Contact Natsumi at 616-622-3066 extension 4 or firstname.lastname@example.org.
By Natsumi Asanuma, M.S., CCC-SLP
Think of the many tools we all use for communication. I’m typing this on a computer keyboard, texted my friends, called a patient on the phone, and took notes on a pad of paper with a pen. These days, there are countless tools available to support communication, and we are all more proficient with some more so than others.
We speech language pathologists (SLPs) often talk with people with ALS (pALS) about a broad range of tools called Alternative and Augmentative Communication (AAC). Many (though not all) pALS will experience changes in their natural speech or voice, and AAC encompasses tools and strategies to make communication as effective as possible for these pALS. Though some utilize speech generating devices or other tools to take the place of vocal communication when speech is not an effective option (the “alternative” in alternative and augmentative communication), there are many options in between to boost (or “augment”) your natural speech. AAC is not an all or nothing approach.
For those starting to notice changes in their voice, speech, or endurance with talking, first identifying your challenges and personal preferences or goals can help with identifying an augmentative communication plan.
Identifying the Challenge
Tools in the Augmentative Communication Toolkit
Guidance from a speech language pathologist that knows your situation well can be helpful for identifying the right tools for you, but here are some examples of augmentative communication methods. You may have even identified some of these tools on your own! Remember that these are new skills for you and likely your communication partner, and trial and error with practice can go a long way.
Though there is a chance of speech abilities changing with ALS, there is always hope of learning new communication skills. The Susan Mast ALS Foundation offers education on these strategies and more, as well as a communication loan closet that includes these quick access tools, through our Jim’s Voice Program. If you are registered with our Foundation and are interested in working with a speech language pathologist to learn more, please contact Natsumi at 616-622-3066 extension 4 or email@example.com.
By Pam VanVliet
The word support can mean many different things to pALS and caregivers living with ALS. From an equipment stand point, support means adaptive equipment that can help pALS move and live well with ALS. For example, when walking becomes challenging, a walker or power wheelchair. In the bathroom a sliding shower bench, hand grips and automatic soap dispenser for safely bathing, and a raised toilet seat with handles. As eating & drinking starts to become challenging, adaptive untensils and cups. It can also be helpful to change door handles from turn to lever.
Support also comes from family, friends and volunteers! Being aware of the needs of the family, walking the dog, yard work, house work, meals. For a caregiver the question “what can I do for you” can be overwhelming. Instead, look at what the caregiver needs and offer to help with that.
Support also comes from our community, recently a Schwan’s truck pulled up in front of my driveway. The man walked up with a bag of food and I told him I did not order anything. He asked if I was the ALS lady, and I said yes. He said he just wanted to help with food for our families and this was a personal donation from him.
What does support look like to you?
by Emily H. Brechting, Ph.D.
SMAF offers a number of support groups for our community. We provide groups for patients and family members to connect, groups for caregivers to come together with others who understand this role, and a grief group for those who’ve lost someone to ALS. Each of these groups makes it possible to spend time with others experiencing similar challenges and who understand the complexities of ALS.
I’m privileged to be a part of these groups as a facilitator for our grief group called Gather and as a guest for the other support groups. Each time I join a group, I thank the members for letting me into their space and allowing me to be with them. There is something so special about the honesty, sharing of stories, exchange of tips, and vital encouragement that takes place in each meeting.
Perhaps you have ideas about what a support group for ALS families might look like...doom and gloom, overwhelming sadness, or something along these lines. It’s true that tears do fall sometimes in these meetings but what always strike me most are the laughter and smiles.
Yes, you read that right. Laughter. Smiles. Sometimes those smiles are reserved. They might be tiny smiles of gratitude at being truly heard by the group. They might be small, knowing smiles accompanied by nodding to let the speaker know they are understood. Other times those smiles are expansive. Perhaps a member shared the news about a new grandbaby or someone is sharing about a recent vacation. There is genuine excitement to share about the recent joys of life and these groups share in one another’s pleasure.
And the laughter? It’s an absolute delight. Were you to listen in on a group, you’d hear a great deal of chuckling. It’s not uncommon for a member to share about a humorous scenario involving issues with assistive equipment, changes in function, or other intricacies involved in living with ALS. It usually starts with “You’re never going to believe this...” As the story unfolds, the group share a collective laugh at the improbable string of events or the creativity needed to resolve the issue. These are laughs of empathy, knowing, and understanding. Other times those chuckles blossom into full-blown laughter. It's hard to predict what will get the laughter rolling, but in those times, members are wiping away a different kind of tears. Those tears are valuable, just like tears of sadness, frustration, and grief. All of them are welcome at our support groups.
Caregivers are the unsung hero in families affected by ALS. It is not typically a job you signed up for!
However the love and care that you show means everything to your pALS. Tending to their needs, with care and compassion, listening to their needs and the touch of a hand mean everything. This is not a 9-5 job. The love and support Caregivers show is amazing.
There are several ways you can support your pALS during this time.
Everyday can be a challenge so we encourage you to take a step back and remember to smile. A rough day can change on a dime when you smile and share a funny moment or sweet memory with them.
Invite a family member over or schedule a zoom night with friends. I was told once that when you walk into a room while taking care of a loved one that you may be the ray of sunshine they have seen all day. Be the sunshine-give them a smile-let them know you are there!
Remember to take care of you. It is vitally important that Caregivers take time for themselves to recharge those batteries. Talk a walk, read a book, call a friend, soak in a tub. You will not be an effective Caregiver if you are not caring for yourself!
We at Susan Mast applaud all of our wonderful Caregivers!
What I love most about working for the Susan Mast ALS Foundation is the privilege of witnessing the various expressions of love within the ALS community.
The love from those living with ALS. The person with ALS (pALS) who shares her experiences with voice and message banking to encourage peers in support group to take action. The pALS who learns how to use an eye gaze speech device to say “I love you” to his family. The pALS who learns about her communication options proactively take care of her future self. The pALS who records readings of children’s books for his grandchildren.
The love of family and friends of pALS. The family members who reach out to learn about ways they can improve their own communication skills to ease the burden of communicating with speech impairment for their loved one with ALS. The spouses who overcome their unfamiliarity with technology to learn how to program a speech generating device with custom messages for their partners with ALS. The best friends who take charge of the voice recording and uploading of message banking phrases.
The love of the community coming together for our pALS. The ALS clinic speech language pathologists (SLPs) who reach out to us after witnessing a patient’s need for a speech generating device. The SLPs who connect with us to learn new skills to better support their patients residing in their facilities. The local and national ALS support organizations who share best practices and resources. The outpouring of participation and support from community businesses, organizations, and individuals during fundraising efforts to support what we do.
Finally, I love working with a team whose members each love what they do and commit themselves to do better for our patients, families, and community.