In this section, we provide a wide range of resources-from caregiving tips to ALS information
to more stories from those who have been on the ALS Journey.
All about BiPAP
The BiPAP, a non-invasive ventilation device, has significantly improved
the quality of life for many ALS patients.
In this section, we provide detailed information on how it works.
Losing Control: The course of ALS is a process of losing control. Barney shares an insight about the importance of letting the ALS patient hold on to control, even if illusory, as long as possible.
Survivor's Thoughts: Barney speaks frankly and insightfully about the feelings of relief that a survivor of this difficult experience should have.
The Diagnosis: Georgina, Barney and his wife had three different responses to the diagnosis, consistent with their radically different personalities.
The Final Days: In the very difficult final days, Barney describes his mothers electrifying and totally unexpected reaction.
Caring for the Caregiver: How family and good friends helped Chris with the caregiving challenges by giving him me-time.
Life After Maggie: For Chris, it is a new journey into the unknown, with much ahead of him.
A Specialist's Perspective: Dr. Websters counsel, to physicians and patients, is to get to know whats normal, so if its abnormal you can go to someone who knows. He describes many different ways that ALS can initially manifest itself.
First Involvement with ALS: Dr. Websters involvement in ALS began when he observed that existing breathing equipment at that time (1978) was either unwieldy or unavailable. He provides an interesting insight about the impact of dreams on breathing ability.
How a Respirologist can Help: Dr. Webster demonstrates, with incisive examples, the many important ways that a respirologist can help an ALS patient.
Learning from ALS Patients: If a doctor is not too proud, he can learn a lot from his patients “ both in terms of treatment and in dealing with the condition.
Non-invasive ventilation - BiPAP: Dr. Webster describes how BiPAP can significantly improve the quality of life for those with declining muscle power. It can also help certain ALS patients talk when before they didnt have enough breath to make a noise.
Advancements in ALS Care: Over the course of his lengthy experience with ALS care, he has seen many advancements starting with improvements in the understanding of ALS and its care. A significant technical development is the use of BiPAP to assist breathing.
Coping as a Professional: Palliative care is difficult for the professional. Dr. Blachowitz will often talk with family, friends and colleagues for support and counsel. He focuses on the positives of providing comfort.
His Role in the ALS Community: Dr. Roy Blachowitz is a Family Physician who includes palliative care as part of his practice. The ALS patients in his care have all been diagnosed and have started some of therapy. In other words, he helps them after theyve started their journey.
Quality of Life: Dr. Blachowitz shares some profoundly deep thoughts about the role of hope and the understanding of change in achieving a satisfactory quality of life.
Reflection on Patient Experiences on Coping: Dr. Blachowitz shares his observations on the various ways the patients and their families cope with ALS “ including faith and alternative therapies. He tells a riveting story of a patient of how one patient was able to actively determine how she wanted to deal with her condition.
Fulfillment of Working in Palliative Care: Dr. Goldman loves his work. He feels privileged to be able to meet fascinating people and their families in situations where there are often at their best. He appreciates their appreciation. And he derives satisfaction from making a difficult situation a little bit easier.
How ALS Care is Different: Dr. Goldman identifies 2 key areas where ALS care is different for the patient and family. As a palliative care physician, he shows great sensitivity in meeting the differing needs and wishes of each family.
How He Became Involved: Dr. Russell Goldman recounts how his involvement with palliative started 18 years ago, right at the beginning of his career, when he was disillusioned with the quality of care at that time and felt there must be a better way.
How He Helps Families Make ALS Care Decisions: Dr. Goldman understands that many decisions require a fair bit of thinking and he helps the families wherever possible by giving them information and giving them time.
Insights on End of Life Care: Dr. Goldman observes how remarkable it is that families are able to rally around and provide end of life care for a loved one and how meaningful that experience is for the family.
Approaching the Disease as a Team: The challenges the primary caregiver faces as the disease progresses are complex and demanding – requiring a delicate dance of profound intensity.
Faith: ALS rocked Felicias faith, but she feels great solace in feeling that Sid is still connected to her.
Family and Friends: Family and friends were there with them as support for the journey – each one taking on a different role. But Felicias best support was Sid.
ALS Insights - Final Words: Felicia shares her insights from her journey with Sid, which still hasnt ended, with those who are just starting out.
Asking for Help: Not wanting to be a burden is a natural response, but asking for help, while difficult, is essential. Melanie strives to give back to her caregivers with insights and seasoned counsel, while they are providing physical help.
Caregivers: It’s important to surround yourself with caregivers who are there – honestly and constantly – to advocate for you. Its important to feel secure and not feel alone.
Crying: Melanie cries a lot more now – for many reasons. We can all gain from her insights about the benefits of crying.
Death: This is a profoundly powerful segment. ALS is fatal. Melanie describes her journey as healing without a cure requiring a re-evaluation of all her beliefs about life. With searing honesty, she shares her feelings about death and life and the relationship between the two.
Qualities of a Good Caregiver: Initially Melanie had no idea what to look for in a caregiver, which is why she feels its best to go with an Agency to help open up that world. The most important quality of a caregiver is the ability to see all of you.
Accessing the ALS Clinics: The province of Ontario supports a network of ALS Clinics that also will provide help via home visits and video conferencing for those who are unable to travel or live in remote areas of Ontario.
Benefits of Technology: Myra describes how the ALS Clinic is able to successfully utilize technology “ both high-tech and low-tech “ to help ALS patients communicate.
BiPAP: Myrna describes how this device is able to help patients breathe more easily. The ALS Clinic provides all the assistance and support required for patients and their families to utilize this wonderful device.
How Patients and Families Cope: Although ALS patients and their families show remarkable abilities to cope with the progression of their condition, the ALS Clinic has a neuro-psychiatrist on staff. These people also have their own successful support group led by an ALS patient herself.
Myrna Moore and the ALS Clinic: Myrna describes all the different staffing resources at the ALS Clinic and how they service their ALS patients and their families “ a group that she views as incredibly special.
Involving the Children: Lexi and Jonah Crystal share their feelings about whether children should be shielded from a loved ones terminal illness.
The Essential Approach to ALS Care: Beth describes how it is vital to anticipate new care requirements as the disease quickly runs its course.
The Final Weekend: The Crystals describe what happened on the final weekend and how they look back at the journey. Beth shares a final word about the power of the human spirit.
The Diagnosis: Beth and Sheldon describe the diagnosis and the steps they took to care for Sara.
Andrea's Complicated Role: As the person responsible for co-ordinating Nardys care, Andrea describes how it was necessary to show great sensitivity to the various degrees of acceptance and resolve that each family member had.
Arranging for Care: Arranging for outside care was a tremendous help for Waynes mother. Ensuring that the care respected his fathers dignity was of critical importance.
How the Family Coped with Care: Waynes family coped very well with the dislocation and challenges of providing care. This is due in no small measure to Andreas involvement “ an involvement which she describes as the most difficult case of her career.
How They Guided their Children: Andrea feels that her kids have a better understanding of dealing with difficult challenges because of the guided experience they had in helping care for their grandfather.
Living in the Moment: In this fascinating segment, Wayne and Andrea describe two different, but complementary, approaches to the progression of the disease “ one living in the moment and the other planning ahead.
An Unforgettable Mother with ALS: Pearl shares a powerful story of being able to help a young mother tell her children she loved them for the first time in 10 months. She realized that she could make a huge impact by using technology to unlock these peoples lives.
Helping Clients and their Families with Technology: Pearl describes how her clinic operates in terms of setting up the technology and helping people afford it. Although frame of reference is Ontario, similar opportunities for support are available in most regions.
How Her Involvement Began?: Pearl describes how her initial exposure to ALS patients made her realize that these people needed a means to communicate in order to improve their quality of life. On her own initiative, she began working on assisted communications devices.
How She Helps Clients through the Journey: As ALS progresses, many patients grieve over the loss of a function and resist the use of assistive technology. Pearl and her team work with the patient and their family to train them, give them hope and just be there to support them.
How She Views Her Clients with ALS: Pearls approach, as an OT, is to engage her clients as people and to find out what they want to do, not what theyve lost. They are an important part of the team.