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OvercomingSpeaking Challenges
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Practical Knowledge Sharing for Overcoming the Daily Challenges of Living with ALS
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By St. Louis ALS Association Caregivers for ALS Caregivers
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Overview
2
Introduction
3
Who We Are
Overcoming Speaking Challenges
We are not experts. We are not vendors.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
THIS BOOK WILL BENEFIT: Those having weakness in their voice (cant always be hard or often asked to repeat), or slurring their words. Anyone who needs help in making their "voice" heard.
The Purpose of This Book
THIS BOOK INCLUDES:
● Losing Your Voice
● Speaking and Listening Techniques
● Caregiver Alerts
● Basic Communication Tools
● Communication Applications
● Keyboard & Mouse Alternatives
● Eye Gaze Speech Assist
● Voice Banking
● Message Banking
● Drooling
● Speaking and Listening Techniques
● Caregiver Alerts
● Basic Communication Tools
● Communication Applications
● Keyboard & Mouse Alternatives
● Eye Gaze Speech Assist
● Voice Banking
● Message Banking
● Drooling
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What This Is Not: This is not a therapy or group counseling session. This is not a vendor sales pitch or health care experts providing “book based” advice.
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 7/18/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 7/18/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
3
Who We Are
We are not experts. We are not vendors.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
The Purpose of This Book
What This Is Not: This is not a therapy or group counseling session. This is not a vendor sales pitch or health care experts providing “book based” advice.
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 7/18/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 7/18/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
4
Losing Your Voice
5
The Personal Impact (Continued)
The Personal Impact
◼ Your voice is an important part of who you are. The impact of the person with ALS losing their "normal: voice may spill over into other aspects of their life. It can be an overwhelming personal impact.
◼ Anxiety may arise from the pALS inability to depend on their voice causing frustration.
◼ There are many raw emotions that the pALS may experience from sad as they remember how much easier life used to be, to mad that they are in this situation. They will often grieve for the loss of what they believe makes them who they are. Some pALS feel that with the loss of their voice, that they too start to disappear.
◼ Communication breakdowns and challenges can be very frustrating and create anger or the opposite, the pALS just discontinues any effort to communicate.
◼ Self-esteem is confidence and satisfaction with yourself. There is no doubt that the change in a pALS voice has a dramatic impact on how they feel about themselves. They need to be reminded that they are still the same person inside and nothing can change that.
◼ Anxiety may arise from the pALS inability to depend on their voice causing frustration.
◼ There are many raw emotions that the pALS may experience from sad as they remember how much easier life used to be, to mad that they are in this situation. They will often grieve for the loss of what they believe makes them who they are. Some pALS feel that with the loss of their voice, that they too start to disappear.
◼ Communication breakdowns and challenges can be very frustrating and create anger or the opposite, the pALS just discontinues any effort to communicate.
◼ Self-esteem is confidence and satisfaction with yourself. There is no doubt that the change in a pALS voice has a dramatic impact on how they feel about themselves. They need to be reminded that they are still the same person inside and nothing can change that.
◼ Not being able to express thoughts and feelings because their voice is not cooperating or having to continually repeat themselves or even worse, being sidelined in a conversation because a pALS can't be heard is demoralizing. Their weak voice might mean they do not get full attention in a group setting or that people might interrupt them or just not listen. It is crushing when the pALS has so much to say and they feel like they are forced to keep silent. This frustration could turn into resignation or withdrawal. But remember, it doesn’t have to.
5
The Personal Impact (Continued)
◼ Not being able to express thoughts and feelings because their voice is not cooperating or having to continually repeat themselves or even worse, being sidelined in a conversation because a pALS can't be heard is demoralizing. Their weak voice might mean they do not get full attention in a group setting or that people might interrupt them or just not listen. It is crushing when the pALS has so much to say and they feel like they are forced to keep silent. This frustration could turn into resignation or withdrawal. But remember, it doesn’t have to.
Video: pALS Perspective on Voice Loss
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6
Losing Your Voice (Continued)
7
Relationship Impacts (Continued)
Relationship Impacts
◼ The caregiver needs to be frank with the pALS. Often times, the pALS doesnt realize that they really do have a speech problem and that it is difficult to fully and clearly understand what the pALS is saying. Reinforce to them that you love them and you just desperately want to understand them. Encourage them to explore addition communication options.
◼ It is easy for a pALS to feel ignored. Make a conscious effort to bring the pALS into conversations and wait patiently as they use their tools to share their thoughts.
◼ Reinforce to the pALS that their thoughts & what they are trying to say matter to you. Then, partner with them and a speech therapist to find the best way to communicate.
◼ Voice loss can change your relationships. Families need to adjust to a new normal, and friends sometimes drift away when communication becomes time consuming. But on the other side , it can bring two people closer together as they spend time together trying to forge a new life.
◼ Like all crises, Voice loss has a way of strengthening bonds between people just as much as it has a way of unmooring friendships. Though some people will drift away, others will not only stick around but will come up with clever ways to connect and communicate.
◼ It is easy for a pALS to feel ignored. Make a conscious effort to bring the pALS into conversations and wait patiently as they use their tools to share their thoughts.
◼ Reinforce to the pALS that their thoughts & what they are trying to say matter to you. Then, partner with them and a speech therapist to find the best way to communicate.
◼ Voice loss can change your relationships. Families need to adjust to a new normal, and friends sometimes drift away when communication becomes time consuming. But on the other side , it can bring two people closer together as they spend time together trying to forge a new life.
◼ Like all crises, Voice loss has a way of strengthening bonds between people just as much as it has a way of unmooring friendships. Though some people will drift away, others will not only stick around but will come up with clever ways to connect and communicate.
◼ Losing their voice can be difficult for a pALS because they lose their naturally independent ability to engage with other people.
◼ Voice loss can test a relationship or marriage. Communication, a key piece of couplehood, is suddenly inaccessible. It means that partners will need to find unique ways to connect, including finding ways so that neither party experiences care-giver or care-receiver burnout. Some couples may split apart due to the stress of the situation, but many others will see their marriage grow and deepen as they lean on each other.
◼ Voice loss can test a relationship or marriage. Communication, a key piece of couplehood, is suddenly inaccessible. It means that partners will need to find unique ways to connect, including finding ways so that neither party experiences care-giver or care-receiver burnout. Some couples may split apart due to the stress of the situation, but many others will see their marriage grow and deepen as they lean on each other.