Voice Banking for ALS Patients

Voice Banking for ALS Patients

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acapela modeltalker myownvoice
Voice Banking for ALS Patients

Over the past few years, we have assisted many ALS patients to bank their voice for later use in an SGD (speech generating device). It’s a wonderful technology which allows patients who are losing their voice to create a text to speech voice for Windows. One company, Model Talker, requires the patient to read in 1600 sentences which capture most phonemes in the English language. Another company, Acapela, can create a voice with as little as 350 sentences which can often be taken from previous recordings of the patient. Once processed, software can then be used to convert any text into the patient’s voice. They can retain their identity through their voice, they are more recognized by children and grandchildren,and possibly their pets and as we’ve recently learned, spouses are more comfortable and at ease when hearing their spouse’s voice.

However, voice banking can be a tedious process and several factors dictate whether or not the patient should start the process altogether. For a patient who can still speak clearly and isn’t experiencing any breathing issues, the process can take as little as 8-10 hours which can be done over a few days. In situations where the patient’s voice is slurred or breathing is difficult, it can take months to nail the full sentence set. We have seen both extremes. We push hard for voice banking when the process will take under 20 hours total.

It’s important to discuss some of the challenges that ALS patients and their families face which can affect voice banking. These are four of the most common challenges we’ve encountered:

  • “Because of the overwhelming nature of the disease, ALS families are often incapable of digesting advice until they are ready for it.”

I heard this brilliant observation from Chris Curtin, Senior Family Care Liaison at Compassionate Care ALS (CCALS). ALS patients and their families are constantly dealing with issues on multiple fronts such as: clinic visits, specialists, social workers, medications, clinical trials, long term care, construction to adapt their home, computer access, and the list just doesn’t end. If one of these areas is grabbing their full attention, they’ll be less capable of making decisions in other areas. Voice banking often doesn’t become a discussion until a patient is going for their SGD which is sometimes too late to voice bank. We encourage families to consider voice banking as soon as possible.

  • Family members of an ALS patient need to become doctors, nurses, therapists, advocates, and tech gurus in a short period of time to help their loved one receive the best level of care. The tech knowledge required to do voice banking correctly and quickly can be a barrier, especially when it needs to be acquired at a time when time is limited and concentration is strained. If a tech person isn’t there to help, it can be a painful and unsuccessful experience. It’s important to have an advocate, either a tech savvy family member or an organization like Bridging Voice, that can provide the guidance and tech support to complete voice banking successfully.

 

  • People with ALS in the early stages of the disease, when voice banking would be the easiest to complete, have difficulty imagining themselves being unable to speak. That precludes them from making informed decisions months or years earlier to prepare for that eventuality. Additionally, high-quality voices available today are so natural and accurate that it’s difficult to convince someone that they would rather have their own voice. However, the families we’ve worked with have all been very thankful to have their own voice and highly recommend voice banking to others.
  • Many families are proactive and do their research for every move they make. Unfortunately, ALS presents itself differently in every person and consensus is often inaccurate. We have seen this more pronounced in voice banking as most people don’t do it, and many who do are unsuccessful because of a lack of support. We have been successful with all of the clients we’ve assisted with voice banking.

However we recognize that many of the above challenges can be difficult to overcome. Having an advocate like Chris Curtin involved with the family makes our job easier because he enters the picture with a holistic approach and can introduce the right people and skills when appropriate. Despite the above challenges we believe voice banking can be a huge blessing for ALS patients and their families, because we’ve seen it work.

If you are interested in learning more about voice banking technical support please contact us at info@bridgingvoice.org.  Below are additional resources: