One of the newest, uncomfortable and kinda funny in a way situations to hit Em recently was the pee situation. Right before I came back for my visit I was nicely struck with a kidney infection, which means catheters, and no shortness of pain with the process. Emily was ironically hit with the same annoying infection around the exact same time. When I was back we shared stories of how we wanted the world to end while things that arent supposed to be put up certain areas were shoved in. Honestly? It sucks, it's not nice, and it's just not meant to be.
Moving on, besides morning slurrness of speech and very minimal random jerky movements, she started to feel like she couldn't do #1 very often. Ask any chick- feeling bloated, well sucks. Being a human sponge is not desirable, unless it's chocolate or something. Anywho, she compained daily of not being able to pee, and health care isn't cheap anywhere. She went in to be seen for this, deal with having another tube shoved up a non-entering hole and jokingly came back to me saying that she needs to go to physical therapy to strengthen her pelvic muscles so she can control the urge and take care of the situation a little better.
She's kinda lucky, kegel excercises work wonders for other things too, watch out guys, she's single.
Saturday, April 25, 2009
Monday, April 20, 2009
A word of advice for all
Desirada
Go placidly amid the noise and the haste,and remember what peace there may be in silence. As far as possible without surrender, be on good terms with all persons.
Speak your truth quietly and clearly;and listen to others, even to the dull and ignorant;they too have their story.
Avoid loud and aggressive persons;they are vexations to the spirit. If you compare yourself with others,you may become vain or bitter; for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time. Exercise caution in your business affairs;for the world is full of trickery. But let not this not blind you to what virtue there is;many persons strive for high ideals;and everywhere life is full of heroism.
Be yourself.
Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantmentit is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be.
And whatever your labors and aspirations, in the noisy confusion of life, keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.
Be cheerful.
Strive to be happy.
Could it work?
The last link in my previous blog had some potential great news; the FDA just this past friday has approved a drug that's the first of it's kind to treat one of the major symptoms found in over 90% of Huntington's Disease sufferers, the spastic movements. This drug does have side effects but is able to get those dealing with the teret-like movements to be able to relax and function almost completely without the jerky movements! This is astounding news! It has been in studies since 2006 and was proven to help people get out of thier house and enjoy daily life activities more. I called my parents before heading to work to have them write down the name of it so they can relay it to Em's doctors, then I called her to let her know of it, and the excitement in her voice was the best way to start off this monday morning, which is also a holiday, Happy 420 :)
What is it?
Huntington's disease is caused by a faulty gene on chromosome 4. The gene, which produces a protein called Huntingtin, was discovered in 1993.
In some way - which is not yet understood - the faulty gene leads to a damage of the nerve cells in areas of the brain, including the the basal ganglia and cerebral cortex.
This leads to gradual physical, mental and emotional changes.
Each person whose parent has Huntington's disease is born with a 50-50 chance of inheriting the faulty gene. Anyone who inherits the faulty gene will, at some stage, develop the disease. A genetic test is available from Regional Genetic Clinics throughout the country. This test will usually be able to show whether someone has inherited the faulty gene, but it will not indicate the age at which they will develop the disease.
The symptoms of Huntington's disease usually develop when people are between 30-50 years old, although they can start much earlier or much later. The symptoms can also differ from person to person, even in the same family.
Sometimes, the symptoms are present for a long time before a diagnosis of Huntington's disease is made. This is especially true when people are not aware that Huntington's disease is in their family.
The early symptoms include:
slight, uncontrollable muscular movements
stumbling and clumsiness
lack of concentration
short-term memory lapses
depression
changes of mood, sometimes including aggressive or antisocial behaviour
Great strain is put on relationships if unexpected temper outbursts are directed towards the partner. The time before a diagnosis is made can be very confusing and frightening because people do not understand what is happening and why.
Some people who know they are at risk spend time searching for the first signs that they are developing the disease. They may worry about simple things like dropping a cup, forgetting a name or becoming unusually bad-tempered. Most people do these things occasionally - whether they are at risk from Huntington's disease or not - so they could be worrying unnecessarily.
Anyone who is concerned should have a word with their GP who may refer them to a neurologist for tests. These tests could include a number of simple assessments and possibly a brain scan. The genetic tests mentioned above may also be used to aid diagnosis.
Later on in the illness people experience many different symptoms which may include:
involuntary movements
difficulty in speech and swallowing
weight loss
as well as emotional changes resulting in:
stubbornness
frustration
mood swings
depression
Cognitive changes that people experience can result in a loss of drive. Initiative and organisational skills, which may result in the person appearing to be lazy. There also may be difficulty in concentrating on more than one activity at a time.
Sometimes, psychological problems, rather than the physical deterioration, cause more difficulties for both the person with Huntington's disease and their carers. Some changes are definitely part of the disease process although they made be made worse by other factors. It is depressing to have a serious illness and extremely frustrating not to be able to do things which previously seemed simple.
In the later stages of the disease, full nursing care will be needed. Secondary illnesses, such as pneumonia, are often the actual cause of death.
Currently there is no cure for the illness, but there are many ways to manage symptoms effectively.
Medication can be used to treat symptoms such as involuntary movements, depression and mood swings. Speech therapy can significantly improve speech and swallowing problems. A high calorie diet can prevent weight loss and improve symptoms such as involuntary movements and behavioural problems.
The above information was taken from http://www.hda.org.uk/charity/whatishd.html
While looking online for a good explanation of the disease, I came across the following site, which offers a shred of help for the future symptoms.
http://www.sciam.com/blog/60-second-science/post.cfm?id=fda-approves-first-huntingtons-dise-2008-08-18
There are miracles in the science of medicine, let's hope this one works to help ease the struggle of what she'll face.
In some way - which is not yet understood - the faulty gene leads to a damage of the nerve cells in areas of the brain, including the the basal ganglia and cerebral cortex.
This leads to gradual physical, mental and emotional changes.
Each person whose parent has Huntington's disease is born with a 50-50 chance of inheriting the faulty gene. Anyone who inherits the faulty gene will, at some stage, develop the disease. A genetic test is available from Regional Genetic Clinics throughout the country. This test will usually be able to show whether someone has inherited the faulty gene, but it will not indicate the age at which they will develop the disease.
The symptoms of Huntington's disease usually develop when people are between 30-50 years old, although they can start much earlier or much later. The symptoms can also differ from person to person, even in the same family.
Sometimes, the symptoms are present for a long time before a diagnosis of Huntington's disease is made. This is especially true when people are not aware that Huntington's disease is in their family.
The early symptoms include:
slight, uncontrollable muscular movements
stumbling and clumsiness
lack of concentration
short-term memory lapses
depression
changes of mood, sometimes including aggressive or antisocial behaviour
Great strain is put on relationships if unexpected temper outbursts are directed towards the partner. The time before a diagnosis is made can be very confusing and frightening because people do not understand what is happening and why.
Some people who know they are at risk spend time searching for the first signs that they are developing the disease. They may worry about simple things like dropping a cup, forgetting a name or becoming unusually bad-tempered. Most people do these things occasionally - whether they are at risk from Huntington's disease or not - so they could be worrying unnecessarily.
Anyone who is concerned should have a word with their GP who may refer them to a neurologist for tests. These tests could include a number of simple assessments and possibly a brain scan. The genetic tests mentioned above may also be used to aid diagnosis.
Later on in the illness people experience many different symptoms which may include:
involuntary movements
difficulty in speech and swallowing
weight loss
as well as emotional changes resulting in:
stubbornness
frustration
mood swings
depression
Cognitive changes that people experience can result in a loss of drive. Initiative and organisational skills, which may result in the person appearing to be lazy. There also may be difficulty in concentrating on more than one activity at a time.
Sometimes, psychological problems, rather than the physical deterioration, cause more difficulties for both the person with Huntington's disease and their carers. Some changes are definitely part of the disease process although they made be made worse by other factors. It is depressing to have a serious illness and extremely frustrating not to be able to do things which previously seemed simple.
In the later stages of the disease, full nursing care will be needed. Secondary illnesses, such as pneumonia, are often the actual cause of death.
Currently there is no cure for the illness, but there are many ways to manage symptoms effectively.
Medication can be used to treat symptoms such as involuntary movements, depression and mood swings. Speech therapy can significantly improve speech and swallowing problems. A high calorie diet can prevent weight loss and improve symptoms such as involuntary movements and behavioural problems.
The above information was taken from http://www.hda.org.uk/charity/whatishd.html
While looking online for a good explanation of the disease, I came across the following site, which offers a shred of help for the future symptoms.
http://www.sciam.com/blog/60-second-science/post.cfm?id=fda-approves-first-huntingtons-dise-2008-08-18
There are miracles in the science of medicine, let's hope this one works to help ease the struggle of what she'll face.
Sunday, April 19, 2009
The Introduction
What to put, what to put. The first blog of many to follow in the path of what will become so complex, difficult and challenging for someone so close to me. I am Emily's sister. Currently, she is 28 years young, and the mother of three children; Alex-2yrs, Kohna-5yrs and Rage-7yrs. I forgot to mention she is a single mother and raising them alone.
Emily is the kind of person in highschool that your parents didn't want you to hang out with. She wore black lipstick, had odd body parts pierced, cherished Marilyn Manson, and did everything that our catholic school girl upbringing tried to convince us otherwise of. Despite her appearance she was probably one of the most caring, honest, and non-scary people I've ever met in my life.
We're not blood related. We don't share the typical bond that sisters or even parents normally have with thier children; I'd die to know what that feels like. All of us four daughters are adopted, (closed adoptions at that), from different families. I view us as lucky, and unique. My sister Em and I shared a bond that was different from that of those with me and the other sisters. She is the closest to age to me, and besides the black lipstick, we shared a lot of interests and ways of life. I guess there can be reasons to explain this. I was quizzed on who the lead singers of 90's grunge rock bands were at 12, my first hit of marijuana was courtesy of her, and highschool parties and alcohol were nicely put into my life from her circle of friends. Looking at her and I is another story. We amaze people when we would go somewhere together. Back in teh day I did some stupid modeling with Hawaiian Tropic, Hooters, etc. so I'm sure you can imagine my over-done and what I think is now worthless appearance. Emily on the otherhand would be rocking a FREE TIBET shirt, mismatched with odd color corduroy pants and beat up sneakers.
Of course we had the childhood arguements and differences, but as time went on and years flew by we became closer. It's now to the point where she will call me up after not talking for months to gripe about some silly boy or ask relationship advice. Time never seems to pass, now every moment is worth that much more.
This is something I have been contemplating doing since I learned of the news. It will be many years worth of misspells, grammar error, and random stories and thoughts, but will be worth more than the world to me to be able to share her story with you.
April of 2009 is a month that will forever stay embedded in my brain. Welcome to my sister's life and journey.
Emily Kellett Bystry was born on March 1st, 1981. The rest is to be continued.
Emily is the kind of person in highschool that your parents didn't want you to hang out with. She wore black lipstick, had odd body parts pierced, cherished Marilyn Manson, and did everything that our catholic school girl upbringing tried to convince us otherwise of. Despite her appearance she was probably one of the most caring, honest, and non-scary people I've ever met in my life.
We're not blood related. We don't share the typical bond that sisters or even parents normally have with thier children; I'd die to know what that feels like. All of us four daughters are adopted, (closed adoptions at that), from different families. I view us as lucky, and unique. My sister Em and I shared a bond that was different from that of those with me and the other sisters. She is the closest to age to me, and besides the black lipstick, we shared a lot of interests and ways of life. I guess there can be reasons to explain this. I was quizzed on who the lead singers of 90's grunge rock bands were at 12, my first hit of marijuana was courtesy of her, and highschool parties and alcohol were nicely put into my life from her circle of friends. Looking at her and I is another story. We amaze people when we would go somewhere together. Back in teh day I did some stupid modeling with Hawaiian Tropic, Hooters, etc. so I'm sure you can imagine my over-done and what I think is now worthless appearance. Emily on the otherhand would be rocking a FREE TIBET shirt, mismatched with odd color corduroy pants and beat up sneakers.
Of course we had the childhood arguements and differences, but as time went on and years flew by we became closer. It's now to the point where she will call me up after not talking for months to gripe about some silly boy or ask relationship advice. Time never seems to pass, now every moment is worth that much more.
This is something I have been contemplating doing since I learned of the news. It will be many years worth of misspells, grammar error, and random stories and thoughts, but will be worth more than the world to me to be able to share her story with you.
April of 2009 is a month that will forever stay embedded in my brain. Welcome to my sister's life and journey.
Emily Kellett Bystry was born on March 1st, 1981. The rest is to be continued.
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