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.