So we've made it to the end of 2010. Thank GOD! I must say that this year really opened my eyes much wider to humanity. I've met some wonderful people, and luckily have gotten rid of many that I just did not need in my life. I am very thankful for those people who have made it through this year with me, and I am more than ready for whatever 2011 has to bring me! I can't wait to start my new classes with my new major in college in the Spring, and I just can't wait for all the amazing things to happen with HDSA and the HD Parity Act. I hope after my vacation from school I will be rested and ready for something new and fantastic! Wishing you all a very Merry Christmas and a Happy New Year!!
Angela
Wednesday, December 22, 2010
Friday, September 17, 2010
Anne Bradstreet- Words of Inspiration...
From Contemplations:
"Man at the best a creature frail and vain, in knowledge ignorant, in strength but weak, subject to sorrows, losses, sickness, pain, each storm his state, his mind, his body break, from some of these he never finds cessation, but day or night, within, without, vexation, troubles from foes, from friends, from dearest, nearest relation..."
"Man at the best a creature frail and vain, in knowledge ignorant, in strength but weak, subject to sorrows, losses, sickness, pain, each storm his state, his mind, his body break, from some of these he never finds cessation, but day or night, within, without, vexation, troubles from foes, from friends, from dearest, nearest relation..."
Thursday, September 16, 2010
Monday, September 13, 2010
Tuesday, August 31, 2010
Lately...
Life lately has been very, hectic. I've been having mild panic attacks and suffering from anxiety. I feel hopeless and helpless... Like I'm just not doing my best.
I've started back at school and am getting busy with that, and my summer job will soon be over in the next few days, so it's actually a blessing.
I haven't been getting much sleep lately and find myself tossing and turning, thinking about life.
I feel since I've begun to create my videos, I've bitten off more than I can chew. I want to be a huge part of the HD community, and love sharing my families story and my own trials and tribulations with my peers.
Thank you to all who have watched and enjoyed the videos. I am finding comfort in knowing that my voice is in some way being heard. I love being an inspirational individual to you all, and feel blessed that you care so much about my struggles, as I do yours.
Life feels like a never ending battle though. Not only am I having to deal with HD, but personal family issues have risen and are taking a toll on the entire family. I think trying to be strong for everyone is making me a tad bit frail... I have made a doctors appointment to diagnose the reasons for my anxiety, stress, and depression, but I feel I know the cause of it already.
Life seems so monotonous... Each day being exactly the same... Dealing each day with HD and normal life...
I've been thinking a lot lately about the fact that I am at risk for a terminal illness, and I think it's finally sunken in... Thinking that one day I will have to make a life changing decision. Which can only go one of two ways, I will be saved from HD or I will be handed my death sentence. The odds are not fair, but if you've seen the HD documentary about Mandy, she says, "What is fair?"...
We are all given a battle to face, a struggle to deal with, and a mountain to climb. But why does HD have to be anyones battle, struggle, or mountain? Each step taken forward seems to be followed by two steps back. I feel like I can't get ahead no matter how hard I try.
For being only 20 years young I am told I am wise beyond my years... That I have the heart and bravery of a Lion, yet I feel as gentle and frail as a lamb. I want to be a voice to be heard and a person to be recond with... I want to make a difference in this world and I know I will be, there is no doubt about that.
I appreciate being an inspiration and helping (you) get through your days as a person to seek guidance, support, and care from. But you all inspire me... Each day I wake up is a gift from somewhere, and something... And in most cases those who are in my shoes, and facing the same things as I am, and dealing with the same struggles as I do, are the reason I get out of bed in the morning.
We all have felt hopeless and helpless, like an ant under a magnifying glass, like life will never let up... But what I remind myself everyday of is the one day, this will be better. It just has to be. There's nothing lower than rock bottom, and the only place we can go is up!
So from me to you, I am here, and I care, and I will be your shoulder to lean on, as I would hope you would be mine...
HD will not break us down, it will build us up!
With lots of love,
Angela
I've started back at school and am getting busy with that, and my summer job will soon be over in the next few days, so it's actually a blessing.
I haven't been getting much sleep lately and find myself tossing and turning, thinking about life.
I feel since I've begun to create my videos, I've bitten off more than I can chew. I want to be a huge part of the HD community, and love sharing my families story and my own trials and tribulations with my peers.
Thank you to all who have watched and enjoyed the videos. I am finding comfort in knowing that my voice is in some way being heard. I love being an inspirational individual to you all, and feel blessed that you care so much about my struggles, as I do yours.
Life feels like a never ending battle though. Not only am I having to deal with HD, but personal family issues have risen and are taking a toll on the entire family. I think trying to be strong for everyone is making me a tad bit frail... I have made a doctors appointment to diagnose the reasons for my anxiety, stress, and depression, but I feel I know the cause of it already.
Life seems so monotonous... Each day being exactly the same... Dealing each day with HD and normal life...
I've been thinking a lot lately about the fact that I am at risk for a terminal illness, and I think it's finally sunken in... Thinking that one day I will have to make a life changing decision. Which can only go one of two ways, I will be saved from HD or I will be handed my death sentence. The odds are not fair, but if you've seen the HD documentary about Mandy, she says, "What is fair?"...
We are all given a battle to face, a struggle to deal with, and a mountain to climb. But why does HD have to be anyones battle, struggle, or mountain? Each step taken forward seems to be followed by two steps back. I feel like I can't get ahead no matter how hard I try.
For being only 20 years young I am told I am wise beyond my years... That I have the heart and bravery of a Lion, yet I feel as gentle and frail as a lamb. I want to be a voice to be heard and a person to be recond with... I want to make a difference in this world and I know I will be, there is no doubt about that.
I appreciate being an inspiration and helping (you) get through your days as a person to seek guidance, support, and care from. But you all inspire me... Each day I wake up is a gift from somewhere, and something... And in most cases those who are in my shoes, and facing the same things as I am, and dealing with the same struggles as I do, are the reason I get out of bed in the morning.
We all have felt hopeless and helpless, like an ant under a magnifying glass, like life will never let up... But what I remind myself everyday of is the one day, this will be better. It just has to be. There's nothing lower than rock bottom, and the only place we can go is up!
So from me to you, I am here, and I care, and I will be your shoulder to lean on, as I would hope you would be mine...
HD will not break us down, it will build us up!
With lots of love,
Angela
Monday, August 23, 2010
Friday, August 20, 2010
Thursday, August 12, 2010
HD Poem
It is a butterfly
That sits so eagerly still
Buried deep in your mind
And in our hearts, so frail.
This butterfly is not colorful
Nor does it flutter its wings.
It calmly waits within your thoughts
Unseen, like many things.
Its hiding away
But makes itself known
With the slightest of ease.
The twitch of your fingers
Like its wing in the breeze.
The butterfly will slowly fade
And disappear in time.
But you will forever live on,
In our hearts,
And in our minds…
Friday, July 30, 2010
NYA!!!
I am now a member of NYA. For those of you who don't know what NYA is, it is the National Youth Alliance for HDSA. I am very excited about this... Now I am a member of the bigger picture for HD.
Sunday, June 20, 2010
Father's Day, June 20th, 2010
My brother Bryan and myself took our dad out to lunch today for Father's Day... It seemed much more difficult than any other time we had taken him out. We were sure to take him somewhere a mess wouldn't be an issue, where it would be small so that no one would sit and stare at us while struggling feeding our dad. We had shown up at his nursing home to find him somewhat ready to go, despite the fact his pants they had him wear were both torn at the knees which was unacceptable. He enjoyed his outting very much, we also took him to Walmart to buy him a belt and a few pairs of shorts to wear on the hotter days here. I noticed that it was much harder to make out what he was saying, to understand him, to know what he needed or wanted. I wanted to break down and cry as he told my brother, "You'll hate having Huntington's..." As I spoon fed him his Father's Day meal... I was very thankful to have this day to spend with my father and brother, but how many more holidays would I have with either of them. A year from now who knows where we will be in our battle with HD? Happy Father's Day to you all...
Friday, June 11, 2010
Friday, June 4, 2010
Wednesday, May 26, 2010
Saturday, May 15, 2010
Team Hope Walk was a SUCCESS!!
TEAM MABRY!
Today was our first annual walk in Albuquerque, NM for Huntington's Disease! We had 90 people register with 35 volunteers! We were told that this was the biggest showing for a first walk!
Can't wait for next year all ready!!
I also filled out my papers for NYA (National Youth Alliance) which is a section of the HDSA for the youth sector. I've been asked to lead NM's NYA if I can be accepted to be a part of it. But it's not just NM its the entire Rocky Mountain Chapter, which includes Colorado, Wyoming, and Utah. This would be so great to do, and I can spread the word and inspiration! Plus have the opportunity to go to the annual HDSA Convention.
Till next time!!
Wednesday, May 12, 2010
Life.
I'm sitting here on my couch thinking about life and how things come to be. And I'm thinking about HD and how it affects me personally. I usually think about what I would do if I got tested, and being faced with this disease more and more each day I've begun to self diagnose. I notice my legs are having movement, my toes, and I feel incredibly ansty all the time. Sitting for more than 30 minutes becomes a huge inconvenience.
One of the doctors who came to our HD Education day said something about being tested and how once they give you those results they can't take them back. Which I understood. I didn't want to get tested until I was ready to settle down and have children. But now, I'm not so sure that is the best choice. When I was younger I wanted to know asap. But then I decided having HD would get in my way of moving on with my life.
I know each day is a gift from God and we should live it to the fullest, but lets be honest with ourselves. Not many of us do that. I would want to hope for the best and that my results would be negative. But if they were postive, I wonder how I would cope. How my mother would take it. I've been thinking of how I would tell my friends and family and how they would take this.
HD in my family was passed from my great grandmother Mary Webb Mabry to my grandfather Walter Mabry, to my father Edwin Mabry, and recently to my brother Bryan Mabry. My papa Walter had three siblings, the oldest was negative, second child positive, third negative and my papa the last child was positive. By the time I was old enough to know my papa he was already taken over by the disease and it was too late. I know he was in the Navy, didn't spend much time with my dad and married a Japanese woman named Michyo who is my grandma and took care of him till the day he died. My dad was raised in New Zealand with his mom and older brother, who as far as we know is HD negative. As far as my dad's side of the family we don't know much of their history or what all happend.
I hope when I come to terms and have to face this disease for myself I will be strong enough to face the consequences of my decision but God will hopefully be by my side...
One of the doctors who came to our HD Education day said something about being tested and how once they give you those results they can't take them back. Which I understood. I didn't want to get tested until I was ready to settle down and have children. But now, I'm not so sure that is the best choice. When I was younger I wanted to know asap. But then I decided having HD would get in my way of moving on with my life.
I know each day is a gift from God and we should live it to the fullest, but lets be honest with ourselves. Not many of us do that. I would want to hope for the best and that my results would be negative. But if they were postive, I wonder how I would cope. How my mother would take it. I've been thinking of how I would tell my friends and family and how they would take this.
HD in my family was passed from my great grandmother Mary Webb Mabry to my grandfather Walter Mabry, to my father Edwin Mabry, and recently to my brother Bryan Mabry. My papa Walter had three siblings, the oldest was negative, second child positive, third negative and my papa the last child was positive. By the time I was old enough to know my papa he was already taken over by the disease and it was too late. I know he was in the Navy, didn't spend much time with my dad and married a Japanese woman named Michyo who is my grandma and took care of him till the day he died. My dad was raised in New Zealand with his mom and older brother, who as far as we know is HD negative. As far as my dad's side of the family we don't know much of their history or what all happend.
I hope when I come to terms and have to face this disease for myself I will be strong enough to face the consequences of my decision but God will hopefully be by my side...
Tuesday, May 11, 2010
Team Hope Walk- Finding a Cure one Step at a time...
MAY 15TH, 8AM, TIGUEX PARK NEAR OLD TOWN ALBUQUERQUE.
$35 per person, $100 per group of four.
Register online at firstgiving.com/hdsa-rm
You can also donate at this website too...
HDSA.org
Here is a link to the Huntington's Disease Association of America. This is where I will get most of the information you see here on my page.
firstgiving.com/hdsa-rm
This is a link to the First Giving website where you can donate money to our up coming Team Hope Walk on May 15th.
Here is a link to the Huntington's Disease Association of America. This is where I will get most of the information you see here on my page.
firstgiving.com/hdsa-rm
This is a link to the First Giving website where you can donate money to our up coming Team Hope Walk on May 15th.
Huntington's Disease
Huntington's Disease: a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically.
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.
Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood.
HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.
Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington's Disease and its effects upon different individuals. By continuing to increase investment in both clinical and basic HD research each year, breakthroughs in treatment - and a cure can be forthcoming.
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.
Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood.
HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.
Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington's Disease and its effects upon different individuals. By continuing to increase investment in both clinical and basic HD research each year, breakthroughs in treatment - and a cure can be forthcoming.
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