Today, 3-29-24, is Brian's 66th birthday. It's a bittersweet day for me because unfortunately he passed in 2019. With an ALS state of the art "smart house" he might still be alive today. I'm still working on bringing ALS awareness and promoting why Hawaii needs an ALS Residence for those that can no longer be cared for at home. I miss my youngest brother and hope to improve quality of life for other ALS patients.
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WHY HONOLULU NEEDS AN ALS RESIDENCE
Around the lake from Chicago is the town of Benton Harbor, Michigan where Brian Burke grew up the youngest of five children in a blue collar family.
The brothers acquired their love of football watching with their dad who left them fatherless at age 14 & 16. Chicago Bears were their go to team!!! They played some high school football but in reality Brian was just a 6’4” 300 pound cuddly teddy bear, humble and laid back.
When his oldest sister Kathy invited him to Hawaii, he left Michigan at age 22 and eventually formed his own moving business having learned the ropes from his brother-in-law.
Years later, after returned letters and a disconnected phone the family asked Kathy to find out what was happening. Kathy tracked Brian down living homeless in the park barely able to walk. Embarrassed and ashamed he agreed to let Kathy help. She went into social worker mode and the following year a diagnosis was determined.
Amyotrophic Lateral Sclerosis (ALS) aka Lou Gehrig’s Disease was the verdict in 2003. Without a home Brian went into foster care and eventually a long-term care home to better accommodate his size and needs. When he developed pneumonia and could no longer breath, he was trached and put on a ventilator.
His new level of care required placement in one of only two skilled nursing facilities with a respiratory care unit.
ALS prognosis is 2-5 years after diagnosis, so life became a roller coaster of medical limbo for Kathy and the family as Brian’s body continued to deteriorate, losing over 100 pounds. His nutrition, an artificial enteral formula, and hydration was delivered through a gastronomy tube (GT).
Brian’s room had two other patients, all three on vents, feeding tubes and their own TV’s. The amount of noise from everything beeping and needing attention was unimaginable and the space was very limited, divided only by a curtain. Brian was totally dependent on the staff for all his needs as he could no longer move or talk to advocate for himself. Kathy did her best to keep his spirits up.
In 2012 the other brother was diagnosed with Glioblastoma Muliforme (GBM) stage 4 brain cancer and given 12-17 months. He underwent surgery, chemo and radiation and stayed with mom in Michigan. 5’5” mom begged Kathy to come help take care of her 6’7” son in 2015 as he deteriorated. Brian now had to “share” his oldest sister for awhile.
On one of Kathy’s back & forth trips to Honolulu she discovered that Brian had developed a stage 4 decubitus ulcer (bedsore) on his right buttock. This is typical in nursing homes and attributed to lack of proper care. He was seen
in-house by a doctor but after Bruce passed and Kathy was permanently back in Honolulu, they went monthly (by ambulance) to a wound clinic for specialty care. Brian could no longer sit in his wheelchair and was now bedbound and had to be transported by guerney.
Kathy visited Brian almost every day and tried to make life interesting and fun. She did birthday celebrations hiring Mariah Carey and Marilyn Monroe impersonators. Brian was visited by NBA Legends Don Ford and Rick Hill. Brian received a signed football by Chicago Bears Charles Tillman and a jersey signed by Olin Kreutz, etc. When the Bears were headed to the Superbowl in 2007 Kathy was unable to get a Bears t-shirt before they sold out every time in Honolulu so she called her mom in Michigan to help. Blizzard conditions at the time prevented travel so mom called a sports store at the mall, paid by credit card and had shirts shipped directly to Honolulu. You should have seen the smile on Brian’s face…priceless!!! Brian was even given permission to have one beer in his feeding tube usually when watching football.
Living with ALS had become the new normal. Without financial resources or a large family support system Brian was “stuck” with his fate. ALS care is a 24/7 job. Fortunately, there are other options, one being an ALS Residence for specialty care, but not in time for Brian who fell through the cracks and passed in 2019. With better care he might still be alive, although COVID with no sisterly visits would have been devastating for him.
Currently two states have an ALS Residence, Massachusetts and New Orleans. Honolulu, Maine and Texas are all trying to create such a special place that would give pALS (people with ALS) a more hopeful, dignified, meaningful existence. It will take a combined, community effort and a lot of money to achieve it. In Honolulu we are only three, senior volunteers, all with connections to ALS, trying to bring our dream into reality. We could use some help.
https://www.alsfoundationhawaii.org
My mum was diagnosed with ALS 12 months ago and while it offered an explanation for her symptoms, we were devastated. She was always so strong and independent and it breaks my heart to see her suffer. We believe she may have had this disease for a few yrs already, but was never diagnose properly. Within the last 6-7 months she became much weaker and it was hard to understand her when she speaks. She was losing weight quickly and depends on a walker. I felt terrible and it is so hard to watch her deteriorate so fast. The riluzole did very little to help her. The medical team did even less. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of our primary physician she would have died. There has been little if any progress in finding a medical treatment. Acupuncture eased her anxiety a bit so my care provider Dr Miller introduced us to Health Herbs Clinic ALS herbal treatment. I wasn’t hopeful at first but glad to share she has recovered significantly within the last 3-4 months It has been a complete turnaround with her speech, she is even learning to walk again without a walker, the herbal treatment is a miracle. Visit www. healthherbsclinic. com we’re forever thankful to nature.
HOW MUCH VALUE IS PLACED ON HUMAN LIFE? Apparently, when a person is diagnosed with ALS, a terminal disease, their life becomes disposable as they are going to die. Some medical people think death is the solution rather than treatment. Well, my brother survived about twenty years living with ALS despite his many medical challenges. He was like the energizer bunny that just kept going. I feel he would still be alive with better care. He was content despite being on a ventilator, G-tube, being non verbal and a quadriplegic. He loved his tv routines, the unexpected, watching sports, flirting with the pretty female staff and daily visits from his sister. But nursing home care does not pay close enough attention to health details and things tend to fall through the cracks. That's why I am determined to create an ALS Residence in Hawaii for specialty ALS care to help prevent another needless death. Unfortunately, it was not in time for my brother. Brian passed away on July 9, 2019.
Please help to make an ALS Residence a reality.
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15 years ago I found my youngest brother living homeless in the park. He had mobility issues and his speech was a bit slurred. We knew something was wrong but we did not know what. He was embarrassed to tell his family on the mainland but agreed to let me help him. Months later he was diagnosed with Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease. He went to a care home and then a long term care facility. When he got pneumonia and needed to be trached and put on a ventilator he had to move to one of few skilled nursing facilities that provided respiratory care. Most skilled nursing facilities are geared for Alzheimers and dementia patients. ALS patients are totally mentally intact as the body declines and becomes paralyzed. With assistive technology and environmental adaptations in a "smart house", rather than being "warehoused", his life could have been so different. Watching his fate over the years I decided to become a super advocate of the ALS Residence Initiative and join forces with 3 others. We formed the ALS Foundation of Hawaii to create an ALS smart house residence on Oahu for our ALS patients to enhance their quality of life.
As President of ALSFH, I can attest to the following:
1. The indomitable passion of the officers/Board members for the cause. Our Board members have been up close and personal with ALS. We have seen the devil in the flesh. It has taunted us most of our lives that it is only fitting that we engage it with all the force we can muster. Between the three of us in the Board, we have amassed more than 50 years of caregiving. Katherine still provides care to her brother, Brian, at his bedside at the Care Center of Honolulu; Ronaele has been a long-distance caregiver to her daughter in California for 7 years. I have been my husband’s caregiver for 31 of the 33 years we were married until his death in 2015. We have seen every manner of life and death with ALS. It is not pretty. It is not something we would wish on anyone.
2. The dedication to responsible stewardship of collected donations for the Foundation. The three of us are professionals; two social workers and a nurse. We know what it is like to be responsible for hearts, minds, and health of our clients. We are life-long learners eager to use new knowledge to better manage our organization. We have the wisdom of years (we are all over 65 years old), the grace of having suffered through ALS, and the desire for better circumstances for our ALS community. We take no financial gains from our organization: we have been known to take from our pockets to fill the need in our organization. We have no office space and work out of our homes and personal equipment. We are thrifty to a fault but know when to appropriately use our resources and networks.
3. We are up to the challenge of our mission. We are prudent but not timid. We are bold but not careless. We are alert: ears to the ground, eyes wide open, intuitions seasoned. We will use best practices to achieve our objectives.
In less than two years, we have launched our organization on the internet, received donations, created fundraisers, wrote grants, made presentations on or about ALS and our organization, increased our networks in the community, reached out to other Residences in the country. Yet we are all part-time volunteers in our organization.
Our dream is big but we believe it is attainable. When it is achieved, it will be a strong statement for innovation in long-term care for the disabled and special communities.
I believe, in my heart of hearts, that our organization is worthy of both thumbs waaaay up.
ALS is a horrible and devastating disease that affects not just the person that has it but every member of their family and loved ones as well. The ALS Foundation of Hawaii works tirelessly to support both pALS and those that love them. Of course there is the much needed funds for research and hope for better treatment and a possibility of a cure. But they are actively working on ways to give both patients and caregivers a better quality of life. Together we can all make a difference.
As a family member of someone afflicted with this awful death sentence, I appreciate the hard work and dedication shown by this wonderful organization. Without them, life would have a much darker outlook.
This is an organization powered by love, a small group of people with big dreams (and the energy and skills to bring them into reality), informed by their ownl experiences with the tragedy of ALS. I watched them come to the assistance of a friend of mine, when her close friend was diagnosed with ALS and they needed intensive help locating resources and developing a care taking plan. They are already a huge asset to anyone in the community who is struggling with ALS, and they will do so much more when they realize their goal of creating a care home for those with ALS.
Because my daughter lives with ALS, I dream, pray, and work for the day when an ALS smart house becomes a reality in Hawaii. With ALSFH, I feel energy and hope abounding, in spite of the nasty diagnosis ALS. This nonprofit maintains focus on its mission, tight money management, and pursuit of quality of life for all. Moreover, collaboration with other ALS services demonstrates an aloha spirit appropriate to our island State. Daily sunrise reminds us to race forward for this cause.
As President of ALSFH, I can objectively attest to the following:
1. The indomitable passion of the officers/Board members for the cause. We all have been up close and personal with ALS. We have seen the devil in the flesh. It has taunted us most of our lives that it is only fitting that we engage it with all the force we can muster. Between the three of us in the Board, we have amassed more than 50 years of caregiving. Katherine still provides care to her brother, Brian, at his bedside at the Care Center of Honolulu; Ronaele has been a long-distance caregiver to her daughter in California for 7 years. I have been my husband’s caregiver for 31 of the 33 years we were married until his death in 2015. We have seen very manner of life and death with ALS. It is not pretty. It is not something we would wish on anyone.
2. The dedication to responsible stewardship of collected donations for the Foundation. The three of us are professionals; two social workers and a nurse. We know what it is like to be responsible for hearts, minds, and health of our clients. We are life-long learners eager to use new knowledge to better manage our organization. We have the wisdom of years (we are all over 65 years old), the grace of having suffered through ALS, and the desire for better circumstances for our community. We take no financial gains from our organization: we have been known to take from our pockets to fill the need in our organization. We have no office space and work out of our homes and personal equipment. We are thrifty to a fault but know when to appropriately use our resources and networks.
3. We are up to the challenge of our mission. We are prudent but not timid. We are bold but not careless. We are alert: ears to the ground, eyes wide open, intuitions seasoned. We will use best practices to achieve our objectives.
In less than two years, we have launched our organization on the internet, received donations, created fundraisers, wrote grants, made presentations on or about ALS and our organization, increased our networks in the community, reached out to other Residences in the country. Yet we are all part-time volunteers in our organization.
Our dream is big but we believe it is attainable. When it is achieved, it will be a strong statement for innovation in long-term care for the disabled and special communities.
ALS Foundation of Hawaii, where do I start... the work they do is great. They have gone through the battle & came out the other side. They have the compassion, dedication & love to help those who have the disease, also their caregivers & families are taught how to cope with it. Without this group of people I don’t know how I would have made it when my brother in law was diagnosed with this horrible disease & when he passed they were there for our family. We became like family to the each other. The work they do is invaluable to the ALS community & I pray that more people will get informed about this nonprofit organization & support them.