Kristin Goetz ALS Medical expenses
Donation protected
For my Dear Friend Kristin,
My name is Perry,
Over a year ago I was blessed with a friendship. One of those truly special friendships that relatively quickly became someone I was honored and blessed to have as a member of "My Tribe." Frankly, speaking what do I consider to be a member of "My Tribe" it's someone who straightens the crown on other's heads before her own. I cherish the fact that we have both been that someone for each other which in the beginning is what we both thought was our darkest hour. Because quite honestly those dark times is where it all began for us. The gratitude I have for how God brought us together helping us to navigate living "One Day At A Time" is insurmountable.
The definition of Inspiration...
the process of being mentally stimulated to do or feel something, especially to do something creative.
The definition of Inspirational...
providing or showing creative or spiritual inspiration.
So, why did I share the definitions above?
My friend, KG (Kristin Goetz) is the epitome of inspiration these days not only for me, but for so many others simply because she was diagnosed with ALS on September 12, 2019. Words cannot describe how I felt a couple of days later when she called to tell me the news. All my own fears of what was going on in my own life at the time were completely minimized. She didn't really have to quantify the implications of what this meant for her life now because I started my career in the medical field. So, I ultimately knew what this might mean for her as the months continued to roll on.
To add to that crushing reality, she had moved away from Florida quickly after our friendship began moving back to her hometown of Buffalo, NY. Which meant to me only that it was going to be so much harder for her to contend with her new diagnosis. At the time I had so many questions, but on the first call did not ask them. Some of them were... did the Doctor tell you this is a progressive disease, when your body slowly starts to succumb to the progression how are you going to navigate living in the snow and ice, but most importantly how is your breathing now because when the Winter comes it will most certainly limit your lungs ability to serve you in the best capacity.
Now here's the thing even after telling me the reality of her situation from here on forth. She wanted to adjust my crown first and asked how things had been going with me. When I wasn't quick to respond after her news she pressed further. Reluctantly, I answered her. Not being in the best place myself but hopefully giving her some comfort vocalizing that I was living in "The Solution" as we had both supported each other to do so many times before. And to that she responded, "okay, but stop with the fluff of the program and be honest tell me what's really been going on?" After that, I quickly and honestly got her up to speed. And, as always following her quiet listening ways the response of her inspirational soul was one of continued support and insights which quelled my own fears and as well as my heart as she had done so many times before.
So what's the bottom line, here? My dear friend has ALS, and I can no longer stand idle watching her disease swiftly progress. A few years back when the ALS Ice Bucket Challenge went viral, I participated knowing in some small way my tiny contribution of doing it myself and asking others to follow suit would make a difference for those affected by this debilitating disease.
So, here I am once again asking for your help as I have decided to start up a Fundraising Effort for KG who has never asked me for anything other than my continued love and support throughout the journey we walk together in recovery and healing.
Thus, on her behalf I am asking for you to donate to someone who is one of a kind and truly an inspirational person. Why? Because she has so bravely begun her own ALS journal on You Tube which she shares regularly on Facebook once again enlightening us all in terms of the many hardships those with this disease face.
Kristin's ALS Journey Journal
Such as the overwhelming feelings of... how do I even begin to accept I have been diagnosed with this cruel disease, how am I going to handle this financially, and the most disheartening thing I've heard her say to date. Perry, my body is failing me. The fact of the matter is I wholeheartedly know the decision for her to freely start documenting it all was not something she decided upon lightly. It's not for sympathy which inspired her to do this it's to tell the story of every ALS patient that not only faces the trials she does daily but the small triumphs she finds along the way imploring gratitude, hope, and humility.
The funds will help Kristin with increased medical expenses, home and vehicle modifications, as well as assist in covering a 5 month gap in income and health care coverage when the Disability process begins.
Below is a break down of expected expenses for an ALS patient and does not include the medical treatment Kristin is hoping to start with Radicava – which without insurance approval is $165,000.00 per year.
Amyotrophic Lateral Sclerosis Yearly Patient cost
· Medical costs: $31,121 +
· Non-medical costs: $17,889+
· Lost income: $14,628 +
Total: $63,692
Additionally, for one to be approved for SSDI, the requirement is to be out of work, and upon approval there is a 5 month waiting period to start collecting benefits.
This means:
- 5 months of NO INCOME
- 5 months of loss of Medical Coverage
- Including Medication monthly costs will increase to $5000 + with the loss of health insurance.
If I haven't said enough already please feel free to read Kristin's story in her own words. For I am just an outsider getting a glimpse of such precious life of a friend I cherish deeply.
Kristin's Story Below:
Dear Friends,
I'm sharing this structured after another ALS patient's story, I think that this paints the picture in vivid relate-able detail. The truth is this disease is a burden and a blessing at times as strange as that may seem. It has forced me to constantly try and focus on the positive, but at times the mountains ahead of me seem insurmountable. I am able to push through every day with the support of my Village, My Community, My Tribe.
To point at a day on the calendar as the best and worst day of your life is a rare feat. On – September 25, 1986 - The Day my Brother Cody was born…BEST day of my life. On September 12, 2019 I was told I’m dying – worst day of my life.
Dr.:__“What's your understanding of what's happening with your body...
Me:__"it's FAILING"
Dr.: __"You have Lou Gehrig’s Disease. There is no treatment, there is no cure"
Me:__(Through tears...)"I'm dying...."
Dr.:__"Yes it is progressive and fatal, I'm so sorry”
DENT Neurological Clinic, Orchard Park, NY
September 12, 2019
As my doctor delicately explained that my body will slowly become paralyzed over the next 2-5 years until I can no longer take a breath, my thoughts drifted to the beach... How can I escape this torture...But the truth is I can't, this is my new reality...being told you dying is unimaginable, but I had some sense of relief. My body had been tortured for months with accelerating symptoms, and my mind tortured with fear and crushed hopes that this was something, ANYTHING other than ALS. I had spent months in emotional turmoil not knowing how to communicate to friends and family just how scared I was and how much I was struggling. I pushed people away who cared with my dramatic outbursts and insecurities. I could only think how I had spent the last 6 months of my life acclimating back home to Buffalo and how happy I had been, but how quickly these fears took over my thoughts, actions, and life.
Now I knew what it was ALS...Truthfully I hadn't remembered exactly what ALS was until I started researching my symptoms in July, then it started to sink in...This was the "Ice Bucket Challenge" disease...
Every time I visit the doctor’s office, I project how the future will unfold, constantly fighting to regain control of my emotions, it continues to crush me. Heartbreaking.
I know what you’re thinking now. You want to know how am I actually doing? The best answer I can give you is, okay. I worry a lot about the future of those around me, this disease takes its toll on everyone involved in my life. I worry about the financial cost of going out like this – The financial burden that falls on SO MANY FAMILIES dealing with Medical Expenses is astounding. While many may not be aware of the financial burden a disease like ALS can cause (as I was not myself).
My mind drifts – how in the world did I get this disease? I have better odds of getting struck by lightning. I’m angry with the knowledge of the statistics and realization that it is even rarer getting this under the age of 50 and, I’m sad thinking about the people that laughed at, or felt burdened by the Ice Bucket Challenge. I'm saddened by the looks on people's faces when they see me and the sound in their voice when they try to hold back their own tears. Most of all, I’m tired and frustrated from Lou being a Stage-5 Clinger and ravaging my body and mobility.
These thoughts and symptoms don’t consume me 24-7. I find joy from participating in life. I enjoy working and the people I work with – in that way I’m luckier than almost anyone I know. I get joy from the thought of what I want to still accomplish in life (Law School, Travel, buying my Home). There is still a lot of joy in my life as I have learned to count my blessings, practice gratitude and take life One Day At a Time...
I learned on bad days to focus on the things instead of from an "I HAVE TO" viewpoint to "I GET TO" ...because I still GET to participate in life in SOOO many ways... and I'm BLESSED for the journey I've had and have ahead of me.
That’s Me.
Many of you have watched me over the last few decline and wondered how I can focus on the positive and live one day at a time. I decided the day of my diagnosis i would not allow this disease to define me, because then it will defeat me. My hope is that we all learn to make the most of our time.
I know what you’re thinking. What can you do to help? You can share my story. You can let people know there is a face to the Ice Bucket Challenge. You can participate, donate, and raise awareness for Lou Gehrig’s Disease (ALS) research. . I’m completely lost in how to raise money or seek resources for myself and a cure for this disease most times...But I HAVE to keep my faith and never lose hope. Most of all, you can celebrate and cherish the health, family, friends, and future you all have in front of you.
That’s You.
Lou Gehrig delivered one of the most famous speeches in American history 77 years ago. He told a stadium full of people he was “the luckiest man on the face of the earth,” after being diagnosed with ALS on his 36th birthday at the Mayo Clinic. He was told then there was nothing they could do for him. It has been 75 years since he has passed away and this year at 37 years old, I was delivered the same message by my Dr.
There are currently 20,000 people in the U.S. with Lou Gehrig’s Disease. Compared to the millions with cancer, MS, and HIV/AIDS, the number is very small, and probably why treatments or a cure has not been developed. It also could be because with Lou Gehrig’s Disease, a person is diagnosed every 90 minutes, and a person dies every 90 minutes. With so very few people actually witnessing its devastation, the public support for treatments doesn’t exist.
That’s Lou.
This is my truth now, my reality now, and I am learning to live with daily with the help and support of my Village, my Community, and my Tribe.
If you are reading this you likely know someone with a similar situation; and if you are reading this and have no experience with Lou Gehrig’s Disease, I ask that you learn more about ALS. But that is not all. Spread the word that this disease has no treatments; it has no cures; and that those who are diagnosed are prisoners to their bodies until their final breath.
I truly appreciate the outpouring of support that I have received in every capacity. PLEASE feel free to reach out with ANY questions, I'm an open book.
<3 Kristin
My name is Perry,
Over a year ago I was blessed with a friendship. One of those truly special friendships that relatively quickly became someone I was honored and blessed to have as a member of "My Tribe." Frankly, speaking what do I consider to be a member of "My Tribe" it's someone who straightens the crown on other's heads before her own. I cherish the fact that we have both been that someone for each other which in the beginning is what we both thought was our darkest hour. Because quite honestly those dark times is where it all began for us. The gratitude I have for how God brought us together helping us to navigate living "One Day At A Time" is insurmountable.
The definition of Inspiration...
the process of being mentally stimulated to do or feel something, especially to do something creative.
The definition of Inspirational...
providing or showing creative or spiritual inspiration.
So, why did I share the definitions above?
My friend, KG (Kristin Goetz) is the epitome of inspiration these days not only for me, but for so many others simply because she was diagnosed with ALS on September 12, 2019. Words cannot describe how I felt a couple of days later when she called to tell me the news. All my own fears of what was going on in my own life at the time were completely minimized. She didn't really have to quantify the implications of what this meant for her life now because I started my career in the medical field. So, I ultimately knew what this might mean for her as the months continued to roll on.
To add to that crushing reality, she had moved away from Florida quickly after our friendship began moving back to her hometown of Buffalo, NY. Which meant to me only that it was going to be so much harder for her to contend with her new diagnosis. At the time I had so many questions, but on the first call did not ask them. Some of them were... did the Doctor tell you this is a progressive disease, when your body slowly starts to succumb to the progression how are you going to navigate living in the snow and ice, but most importantly how is your breathing now because when the Winter comes it will most certainly limit your lungs ability to serve you in the best capacity.
Now here's the thing even after telling me the reality of her situation from here on forth. She wanted to adjust my crown first and asked how things had been going with me. When I wasn't quick to respond after her news she pressed further. Reluctantly, I answered her. Not being in the best place myself but hopefully giving her some comfort vocalizing that I was living in "The Solution" as we had both supported each other to do so many times before. And to that she responded, "okay, but stop with the fluff of the program and be honest tell me what's really been going on?" After that, I quickly and honestly got her up to speed. And, as always following her quiet listening ways the response of her inspirational soul was one of continued support and insights which quelled my own fears and as well as my heart as she had done so many times before.
So what's the bottom line, here? My dear friend has ALS, and I can no longer stand idle watching her disease swiftly progress. A few years back when the ALS Ice Bucket Challenge went viral, I participated knowing in some small way my tiny contribution of doing it myself and asking others to follow suit would make a difference for those affected by this debilitating disease.
So, here I am once again asking for your help as I have decided to start up a Fundraising Effort for KG who has never asked me for anything other than my continued love and support throughout the journey we walk together in recovery and healing.
Thus, on her behalf I am asking for you to donate to someone who is one of a kind and truly an inspirational person. Why? Because she has so bravely begun her own ALS journal on You Tube which she shares regularly on Facebook once again enlightening us all in terms of the many hardships those with this disease face.
Kristin's ALS Journey Journal
Such as the overwhelming feelings of... how do I even begin to accept I have been diagnosed with this cruel disease, how am I going to handle this financially, and the most disheartening thing I've heard her say to date. Perry, my body is failing me. The fact of the matter is I wholeheartedly know the decision for her to freely start documenting it all was not something she decided upon lightly. It's not for sympathy which inspired her to do this it's to tell the story of every ALS patient that not only faces the trials she does daily but the small triumphs she finds along the way imploring gratitude, hope, and humility.
The funds will help Kristin with increased medical expenses, home and vehicle modifications, as well as assist in covering a 5 month gap in income and health care coverage when the Disability process begins.
Below is a break down of expected expenses for an ALS patient and does not include the medical treatment Kristin is hoping to start with Radicava – which without insurance approval is $165,000.00 per year.
Amyotrophic Lateral Sclerosis Yearly Patient cost
· Medical costs: $31,121 +
· Non-medical costs: $17,889+
· Lost income: $14,628 +
Total: $63,692
Additionally, for one to be approved for SSDI, the requirement is to be out of work, and upon approval there is a 5 month waiting period to start collecting benefits.
This means:
- 5 months of NO INCOME
- 5 months of loss of Medical Coverage
- Including Medication monthly costs will increase to $5000 + with the loss of health insurance.
If I haven't said enough already please feel free to read Kristin's story in her own words. For I am just an outsider getting a glimpse of such precious life of a friend I cherish deeply.
Kristin's Story Below:
Dear Friends,
I'm sharing this structured after another ALS patient's story, I think that this paints the picture in vivid relate-able detail. The truth is this disease is a burden and a blessing at times as strange as that may seem. It has forced me to constantly try and focus on the positive, but at times the mountains ahead of me seem insurmountable. I am able to push through every day with the support of my Village, My Community, My Tribe.
To point at a day on the calendar as the best and worst day of your life is a rare feat. On – September 25, 1986 - The Day my Brother Cody was born…BEST day of my life. On September 12, 2019 I was told I’m dying – worst day of my life.
Dr.:__“What's your understanding of what's happening with your body...
Me:__"it's FAILING"
Dr.: __"You have Lou Gehrig’s Disease. There is no treatment, there is no cure"
Me:__(Through tears...)"I'm dying...."
Dr.:__"Yes it is progressive and fatal, I'm so sorry”
DENT Neurological Clinic, Orchard Park, NY
September 12, 2019
As my doctor delicately explained that my body will slowly become paralyzed over the next 2-5 years until I can no longer take a breath, my thoughts drifted to the beach... How can I escape this torture...But the truth is I can't, this is my new reality...being told you dying is unimaginable, but I had some sense of relief. My body had been tortured for months with accelerating symptoms, and my mind tortured with fear and crushed hopes that this was something, ANYTHING other than ALS. I had spent months in emotional turmoil not knowing how to communicate to friends and family just how scared I was and how much I was struggling. I pushed people away who cared with my dramatic outbursts and insecurities. I could only think how I had spent the last 6 months of my life acclimating back home to Buffalo and how happy I had been, but how quickly these fears took over my thoughts, actions, and life.
Now I knew what it was ALS...Truthfully I hadn't remembered exactly what ALS was until I started researching my symptoms in July, then it started to sink in...This was the "Ice Bucket Challenge" disease...
Every time I visit the doctor’s office, I project how the future will unfold, constantly fighting to regain control of my emotions, it continues to crush me. Heartbreaking.
I know what you’re thinking now. You want to know how am I actually doing? The best answer I can give you is, okay. I worry a lot about the future of those around me, this disease takes its toll on everyone involved in my life. I worry about the financial cost of going out like this – The financial burden that falls on SO MANY FAMILIES dealing with Medical Expenses is astounding. While many may not be aware of the financial burden a disease like ALS can cause (as I was not myself).
My mind drifts – how in the world did I get this disease? I have better odds of getting struck by lightning. I’m angry with the knowledge of the statistics and realization that it is even rarer getting this under the age of 50 and, I’m sad thinking about the people that laughed at, or felt burdened by the Ice Bucket Challenge. I'm saddened by the looks on people's faces when they see me and the sound in their voice when they try to hold back their own tears. Most of all, I’m tired and frustrated from Lou being a Stage-5 Clinger and ravaging my body and mobility.
These thoughts and symptoms don’t consume me 24-7. I find joy from participating in life. I enjoy working and the people I work with – in that way I’m luckier than almost anyone I know. I get joy from the thought of what I want to still accomplish in life (Law School, Travel, buying my Home). There is still a lot of joy in my life as I have learned to count my blessings, practice gratitude and take life One Day At a Time...
I learned on bad days to focus on the things instead of from an "I HAVE TO" viewpoint to "I GET TO" ...because I still GET to participate in life in SOOO many ways... and I'm BLESSED for the journey I've had and have ahead of me.
That’s Me.
Many of you have watched me over the last few decline and wondered how I can focus on the positive and live one day at a time. I decided the day of my diagnosis i would not allow this disease to define me, because then it will defeat me. My hope is that we all learn to make the most of our time.
I know what you’re thinking. What can you do to help? You can share my story. You can let people know there is a face to the Ice Bucket Challenge. You can participate, donate, and raise awareness for Lou Gehrig’s Disease (ALS) research. . I’m completely lost in how to raise money or seek resources for myself and a cure for this disease most times...But I HAVE to keep my faith and never lose hope. Most of all, you can celebrate and cherish the health, family, friends, and future you all have in front of you.
That’s You.
Lou Gehrig delivered one of the most famous speeches in American history 77 years ago. He told a stadium full of people he was “the luckiest man on the face of the earth,” after being diagnosed with ALS on his 36th birthday at the Mayo Clinic. He was told then there was nothing they could do for him. It has been 75 years since he has passed away and this year at 37 years old, I was delivered the same message by my Dr.
There are currently 20,000 people in the U.S. with Lou Gehrig’s Disease. Compared to the millions with cancer, MS, and HIV/AIDS, the number is very small, and probably why treatments or a cure has not been developed. It also could be because with Lou Gehrig’s Disease, a person is diagnosed every 90 minutes, and a person dies every 90 minutes. With so very few people actually witnessing its devastation, the public support for treatments doesn’t exist.
That’s Lou.
This is my truth now, my reality now, and I am learning to live with daily with the help and support of my Village, my Community, and my Tribe.
If you are reading this you likely know someone with a similar situation; and if you are reading this and have no experience with Lou Gehrig’s Disease, I ask that you learn more about ALS. But that is not all. Spread the word that this disease has no treatments; it has no cures; and that those who are diagnosed are prisoners to their bodies until their final breath.
I truly appreciate the outpouring of support that I have received in every capacity. PLEASE feel free to reach out with ANY questions, I'm an open book.
<3 Kristin
Fundraising team (4)
Kristin Goetz
Organizer
Clarence, NY
Timothy Dickinson
Team member
Perry Snead
Team member
Ivy Whitworth
Team member