Kiara's Early Onset Dementia Fund
Donation protected
Hello to all my friends and family from lovely Victoria, B.C.!
(This is Destinee writing for my mom Kiara Hunter as she has a very difficult time with finding the right words)
This has been a very transitional year and a challenging journey... I am grateful to have so many incredible and helpful friends to get me through it and finally back home to Canada!
I have recently been diagnosed with frontotemperal dementia, which is often misdiagnosed as a psychiatric problem or as Alzheimer’s disease.
The most common signs and symptoms of frontotemporal dementia involve extreme changes in behavior and personality. Some symptoms are listed as:
Increasingly inappropriate actions
Loss of empathy and other interpersonal skills
Lack of judgment and inhibition
Apathy
Repetitive compulsive behavior
A decline in personal hygiene
Changes in eating habits, predominantly overeating
Oral exploration and consumption of inedible objects
Lack of awareness of thinking or behavioral changes
The signs and symptoms of frontotemporal dementia progressively worsen over time, almost always over years. Some people have been known to live 2 years after diagnosis, some 16 but it is 100% degenerative with no cure. Eventually, people require 24-hour care. To find out more, here is a link.
https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737
Since this hits so young and during a period of peoples prime money making time, I have no way to plan/save for retirement. This disease affects your prioritizing, planning and multitasking and we are not sure when it begun. Because of this lack of planning, I have no savings to speak of and very little plans for my future.
My family has been helping as much as they can and luckily the government will find me a care home to live in and pay for my rent and food.
This gofundme is for speech therapists, music therapists, a personalized care aid and future prescriptions. I would appreciate you donating what you can spare and god bless.
My story
____________________________________________________________
The past couple of years I have been feeling unmotivated and overwhelmed with even daily tasks and couldn’t get a proper diagnosis in the United States because of the expensive medical bills. Bills and tasks started to pile up and I couldn’t quite get the words out to explain my situation. It was scary and isolating, with me feeling like I knew the words, could even write them, but couldn’t form them into sentences.
My short term memory became very erratic and seconds would pass by with me forgetting what I had said. I could still remember long term perfectly thankfully, with my family, childhood, close friends memories in tact.
A couple months ago, I had nowhere to stay and a cut phone. A wonderful man named Doug took me under his wing and helped me with a temporary place to stay while I got into contact with my family. Things were starting to look desperate and so I drove from Virginia to Chicago to my lovely friend Jen who housed me while staying in contact with my family to get me home.
Eventually, it was figured out (which was challenging with an expired passport!) and I flew to Bellingham and walked across the border with my emotional support dog Katana. Nobody had seen me for 2 years and didn’t know what to expect. The symptoms seemed to related to possible stroke, acute depression, mental break or a degenerative neurological disease. It was a very scary and unknown time for everyone involved.
Finally back in Vancouver, I stayed with one of my oldest friends Mark while I waited for my kids to come over from Vancouver Island. As soon as Destinee came over, we went to a clinic where I was referred to an emergency psychiatrist at St Pauls hospital. Dez applied for my BC Medical as soon as she could and it luckily has been back dated to when I moved back. So thankful to be in Canada with this wonderful medical coverage.
After CAT Scans, EEGS and psychiatrist sit downs, the doctors came to a conclusion. There was significant brain shrinkage in the front and front left side of my brain which leads them to a confident diagnoses of Frontotemperal dementia. Some people with this type of dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent, while others lose the ability to use language.
I wanted to tell people now because I know that a lot of people witnessing my actions have been confused and possibly frustrated. Believe me I was too! At 52, it is a form of rare (less than 10% of dementia cases are FTD) and early on set dementia which hits in between 40 and 50 and there is no clear explanation as to why it occurs. Sadly, there is no cure and degenerative as time goes on.
I am learning to deal with this set back every day with my kids and currently living in Patient care at Royal Jubilee Hospital while I await long term residential care housing. I would love your words of support in this trying time but am relieved to finally understand what is going on with me. I have been coloring, playing video games and listening to music and getting back to the basic things I used to enjoy!
Sending you love and light ❤
(This is Destinee writing for my mom Kiara Hunter as she has a very difficult time with finding the right words)
This has been a very transitional year and a challenging journey... I am grateful to have so many incredible and helpful friends to get me through it and finally back home to Canada!
I have recently been diagnosed with frontotemperal dementia, which is often misdiagnosed as a psychiatric problem or as Alzheimer’s disease.
The most common signs and symptoms of frontotemporal dementia involve extreme changes in behavior and personality. Some symptoms are listed as:
Increasingly inappropriate actions
Loss of empathy and other interpersonal skills
Lack of judgment and inhibition
Apathy
Repetitive compulsive behavior
A decline in personal hygiene
Changes in eating habits, predominantly overeating
Oral exploration and consumption of inedible objects
Lack of awareness of thinking or behavioral changes
The signs and symptoms of frontotemporal dementia progressively worsen over time, almost always over years. Some people have been known to live 2 years after diagnosis, some 16 but it is 100% degenerative with no cure. Eventually, people require 24-hour care. To find out more, here is a link.
https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737
Since this hits so young and during a period of peoples prime money making time, I have no way to plan/save for retirement. This disease affects your prioritizing, planning and multitasking and we are not sure when it begun. Because of this lack of planning, I have no savings to speak of and very little plans for my future.
My family has been helping as much as they can and luckily the government will find me a care home to live in and pay for my rent and food.
This gofundme is for speech therapists, music therapists, a personalized care aid and future prescriptions. I would appreciate you donating what you can spare and god bless.
My story
____________________________________________________________
The past couple of years I have been feeling unmotivated and overwhelmed with even daily tasks and couldn’t get a proper diagnosis in the United States because of the expensive medical bills. Bills and tasks started to pile up and I couldn’t quite get the words out to explain my situation. It was scary and isolating, with me feeling like I knew the words, could even write them, but couldn’t form them into sentences.
My short term memory became very erratic and seconds would pass by with me forgetting what I had said. I could still remember long term perfectly thankfully, with my family, childhood, close friends memories in tact.
A couple months ago, I had nowhere to stay and a cut phone. A wonderful man named Doug took me under his wing and helped me with a temporary place to stay while I got into contact with my family. Things were starting to look desperate and so I drove from Virginia to Chicago to my lovely friend Jen who housed me while staying in contact with my family to get me home.
Eventually, it was figured out (which was challenging with an expired passport!) and I flew to Bellingham and walked across the border with my emotional support dog Katana. Nobody had seen me for 2 years and didn’t know what to expect. The symptoms seemed to related to possible stroke, acute depression, mental break or a degenerative neurological disease. It was a very scary and unknown time for everyone involved.
Finally back in Vancouver, I stayed with one of my oldest friends Mark while I waited for my kids to come over from Vancouver Island. As soon as Destinee came over, we went to a clinic where I was referred to an emergency psychiatrist at St Pauls hospital. Dez applied for my BC Medical as soon as she could and it luckily has been back dated to when I moved back. So thankful to be in Canada with this wonderful medical coverage.
After CAT Scans, EEGS and psychiatrist sit downs, the doctors came to a conclusion. There was significant brain shrinkage in the front and front left side of my brain which leads them to a confident diagnoses of Frontotemperal dementia. Some people with this type of dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent, while others lose the ability to use language.
I wanted to tell people now because I know that a lot of people witnessing my actions have been confused and possibly frustrated. Believe me I was too! At 52, it is a form of rare (less than 10% of dementia cases are FTD) and early on set dementia which hits in between 40 and 50 and there is no clear explanation as to why it occurs. Sadly, there is no cure and degenerative as time goes on.
I am learning to deal with this set back every day with my kids and currently living in Patient care at Royal Jubilee Hospital while I await long term residential care housing. I would love your words of support in this trying time but am relieved to finally understand what is going on with me. I have been coloring, playing video games and listening to music and getting back to the basic things I used to enjoy!
Sending you love and light ❤
Organizer
Dez Raine
Organizer
Victoria, BC
