The Rodeo and Huntington’s Disease;  Cotten Candy, Corn-Dogs, Fried Pickles and Birthdays!

    For several reasons I love the rodeo, it has been a family tradition instilled into our souls for a long time!  The smells from the fried and grilled foods to the animal poop and sounds of rides, cheers of excitement from all ages, the Star Spangle Banner brings back good memories. When I was younger my family used my birthday, which always falls somewhere during our local rodeo, as an excuse for a great big family outing.  We  always did at least one concert, but we would go to the grounds several times throughout the whole event.  We would walk through the different animal barns, looking at any exhibits and walk through all the shopping venders.  We would sit in the horse auction barns saying that would be us one day after buying land, we would come here to buy a horse. We would ride countless rides in the midway and also play and sometimes even win at the carney games.   My father ended up getting involved working on a rodeo committee for several years.  My dad was and still is a true 100% Texan born, navy boy, baptist, a grease monkey in the garage, a welder and a tried and true volunteer firefighter; if he wasn’t wearing a uniform, he was either dressed for more formal occasions and if that was not the case, he was dressed in wranglers and a pearl snap shirt, leather belt and boots, always with a colored pocketed tee-shirt, pocket for his cigarettes but thankfully he willingly gave up smoking a few years back..  When we take him out we still dress him in the same fashion, with the exception of the boots, with his wheelchair it’s easier in the velcro sneakers he likes, but he still wears the wranglers, the pearl snap shirt, belt, and cowboy hat every time we go out, whether it is the rodeo or the doctor, we always arrive with fireworks, sometimes good and beautiful and sometimes bad and dangerous.

    I am also very lucky that the family I married into has family rodeo traditions of their own, which happen to include incredibly located season tickets to the rodeo.  Throughout the years I have had the chance to see some of my favorite bands and many more.  This year I think we got to five or six shows and would have been more but I had one or two bad HD days that I had to plan around.  These times have been some of the best times of my life and I always look forward to this time of year!   Boots, kicker jeans, pearl snaps shirts and cowboy hats! For good reasons they don’t trust me with spurs, laughing at ones self is often the better medicine and then sometimes it’s the only medicine…

    One thing we try to do each year is take my dad out to the rodeo for at least one show each year and if time and weather allow we take him around the fair grounds.   We knew before we took him out that this year that it was is probably his last rodeo.  It is getting so hard to move him he is so thin, sometimes so weak, we are always worrying about sabotaging his health with our own desires to have him at family gatherings.  I anticipate that it won’t be to long until his number is called for his finial ride and I want to make sure that he is as ready as he can be and that all of us around him learn the lessons we need to learn from him to carry with us for life and all we can do is try to over flow his cup with unconditional love, peace and grace and remind him that God loves him and we love him and that’s enough .  One of my current traditions each year is getting a picture for the scrapbook because any year could be the last and we want as many photos we can share with the future, as well as hold near to our hearts when he is no longer here with us.  For several reasons it didn’t work out that I could take our annual group family pictures to update the scrapbook. I will tell myself the same thing, I try to tell him that God has control, I need to put up more sticky notes on the mirror to remind me of the same advise, we have the pictures from last year and years before are more opportunities then many other HD Families I know in the HD Community.  When I turn it over to God and his son, as I understand them in and as my faith and devotion as a Christian, internal  acceptance pours over my being and consumes  my spirit and I know by the grace of God and his sons blood I am saved no matter how it pans out, whether there is a cure or treatments for Huntington’s Disease (which I do pray for, especially for the future generation)  or if I am chosen to be a martyr for HD, some other illness or for Christ, I am okay with whichever path presents its self because I know regardless I am going to HEAVEN; which I hear is the best resort there is! 

   On a good day it is easier for me to remember God grant me the serenity to accept the things I cannot change the courage to change the things I can and the damn wisdom to know the difference, AMEN!  It’s how I deal with life and having Huntington’s Disease. I remind my dad him of these things because I know he knows them and of Gods grace and sacrifice and the gift of heaven we are receiving and I remind him that even through all our ups and downs, that he was the one who help bring those things into my life.i I don’t know how many years I will be  able to be blessed with the ability to go to to rodeo, but I have accepted that  no matter which path leads me to heaven that I will try to live all my good days to the fullest ablity I can. One day at a time, GODBLESS.

One Of My Unique Descriptions For Huntington’s Disease

With Huntington’s Disease the dysfunction of your brain is not having the ability for it to work right, it’s not able to correspond with other parts of the brain that control all functions of your body, mind and soul.

Let’s compare the brains processing center to a large elevator with two sets of doors like in a big hotel or better yet, a large casino; people ,brain activity, gets on at the lobby area of each floor, with their intended destination, original commands given at the front of the brain. As the elevator ascends and or descends something doesn’t happen right and the control to open the elevator door to exit is not working. Now you have more brain activity , or people getting on at each level , the elevator becomes over filled and without the ability to properly balance people getting off the elevator, quickly exceeding the neurological weight limit of sanity. Or another example, the door to the exit opens but doesn’t not close, so instead of brain activity going to where you may have wanted it to go, it is forced off on the wrong floor in your brain, causing extra inappropriate brain activity; functions , via feelings, movements and actions.

Fact in my life :When it rains, it pours : Living with Huntington’s Disease

I really thought I would be posting in this blog weekly but sadly because of all the intense drama surrounding my life recently, it has been the last thing I could update and now after the new year, sadly like I had predicted is when I would actually find the time to grive properly and write about it.

I know many, many, many people who have earned their wings to heaven this extended holiday season, among them was my grampa, and sadly the list continues and will continue to grow especially as I meet more people with Huntington’s Disease… This is what I had posted on another site…

SCREW CANCER and SCREW HUNTINGTON’S DISEASE too. These diseases can steal our loved ones but they cannot steal your memories of their love. I will see you in heaven when it’s my turn to be led home by Jesus. I will honor you and the lessons you taught me, and pray I make you proud. I will miss each good time we shared with each other, but then I am reminded that I had you for an amazing 33 years. when my dad got sick from HD you stepped in and became my safety net that helped enable me to succeed, to become the person I am today and there are no words other than, ” I love you and thank you”…

In the first few days after my grampa’s passing, I had two bad emotional spontaneous combustion outbursts of my emotions and my lack of ability to reason. My mind spinning, my mental elevator had big bio-hazard signs and do not enter tape plastered across the elevators entrance, crossing the doors, along with there were also chains blocking any hope of any repair for any time soon , the signs said for nearest emergency route out goto a ledge near you and jump. Go to a window and jump, or bridge, or cliff ,insert where you are located and then jump, get the picture? No good or fuzzy delusions, only bad ju ju coming my way for that day because my mind ‘s damage caused by the mutated CAG repeats in my DNA, poison like antifreeze to an animal or as krypton is to Super Man. I told my husband before we ever started talking as friends that I was bad news, that I was poison ivy and would rob the healthy plants and animals

And he needed to avoid me.The first outburst was the a day after his passing at that moment where I lost control of myself I broke down and and I can’t say for sure what my motive was. I don’t know if I would hurt myself in a suisidial manner but I don’t know, I pray not; I grabbed a pair of scissors and chopped three psychotic dramatic chunks into my long curls, longer than they had been in a very long time, pinned back in a ponytail. The first cut went into the top of the ponytail and then, while still screaming and crying I cut into the ponytail behind my ear and that’s when thank God, my husband/cargiver was able to restrain me and take the scissors away from my hands and try to console me with the fact that yes losing my grandfather had been a major stress and loss for us all and that I needed to try to remember that whatever was going on in my head was not all my fault, that the Huntington’s Disease in my head was preventing me from communicate without lashing out at someone else or myself.

So after I was calmer, along with taking as needed medications, and under my husbands/caregiver’s watchful eye, hardly recognizable as the cosmetologist I once was, I made the third cut into the back of my hair, with a last ditch effort to make it look somewhat even until I could find out if there would be time to get it cut professionally before what would be my grampa’s funeral services. In the moments ,mere second or two I glimpse through the raw jagged broken glass of my delusions and I look into the mirror or into my husband’s eyes and that one little bit of productive brain activity to get processed 100% makes me aware of the depth and level of my delusion and that is so vivid and so raw and I hate the things this disease forces me to force on others and at those moments I am so happy and content with my life choices and decisions that got me to where I am today, even if it meant taking steps to not have children of my own.

So 2 months after his passing, we all still miss him but we are making it one day at a time, with the help from our family and friends.  I have had many more break downs sense the holidays. With each one I offer my husband the opportunity to leave me, to better his own life, to be able to fulfill his childhood aspirations for children of own. For a wife who doesn’t need a caregiver out of her husband and who’s behavior is predictable and productive to the relationship. Yet he reassures me that he loves me, is not going anywhere, and has already excepted the decision for us not have children. That as of right now he still gets enough love and good memories with me that he would be lost without me. Neither of us is prefect, we are both dying eventually, and there is no time to keep score.

In the last six weeks both my main caregivers, one being my husband and the other being my mother, and I have all passed a wicked combination of the flu, sinus infection, strep and bronchitis between the family, all in addition to each of our own personal health issues. What doesn’t kill us makes us stronger, but durning this time my dad, who is very late stage hd we have not been able to see him as often at the nursing home because we have each been so sick. As a result when we took him to the nueroligist with myself and my mom for our semiannual appointments and we get him to balance briefly on the scale before his impaired ability to balance in place and remain standing up straight fails him yet again… When we took his weight we figured out that he had lost between 12lbs. to 15lbs. while we had not been there as often as we would have like. The two time he made it on to the scale the weights were 97.5 and 104.5, we went with the last one for the files.

Sadly we have still been sick since then and we have no clue to what his weight is now but it is probable that he lost more weight, but it looks hopeful that we have come to a point of not being contagious and being physically recuperated. With my dad, we take everyday one day at a time. Everyday he wakes up is a blessing, no matter if it was a good day or a bad day for ‘us’ in dealing with our own lives or his needs. We have prepared ourselves with lots of knowledge, medical, legal, lots of pre-planning of my fathers desires for when he was to sick to make the choices that he saw important and what he wanted. One of those things was a standing order for a DNR, we have had therapy and in theory we know what is coming, from watching other family members and friends with HD pass away. I think knowing that and being in, as scary and crappy as it is, total acceptance of my dad’s fate helps me get through the hard days with him and the good memories I have I hold on to and use for fuel to get me until he has a good day. We still keep my dad as involved as possible he maybe only able to eat creamy non-chunky soup or mashed potatoes with extra gravy and lots of medical ice cream shakes but we don’t just take it to him at his nursing home, we take him to the food, to family celebrations, and God willing, we’ll be taking him to the rodeo this month. We know he’s on Gods time schedule and could be called home to heaven any moment and that’s okay too, it would be a glorious celebration for his soul.

One day at a time and we will make it.

Venting: living life with Huntington’s Disease.

I have been torn lately as how to respond to some posts I have seen in my on-line Huntington’s disease support groups reality is there may not be enough time for a cure but I try to live every day to the fullest

I pray every day I have the strength to fight this disease until the end and I am called to heaven by God. But I can’t promise, there is no garnentee that I won’t emotionally combust and lose control one day and hurt myself to point of no recover.

I am not saying any of this to gain pity from anyone , I just want to let you know how hard i fight to choose to be proactive in my impending death from this disease. I have been suffering from Huntington’s disease for over 15 years. I tried to be tested in high school at the age of 16 in 1997. The reasons I wanted to be tested were because I was having severe emotional issues , had been for years along with physical aggression, I was verbally abusive. I also wasn’t able to control the workings of the part of my brain that accessed the normal persons conscious. I told them it would be easier for me to fight the demon I could see, than wonder if he is to my right, if he is to my left or not even there at all. I needed to know to get my life back on track what ever the results may be , I knew knowing would take me farther in my life After going through an expensive protocol I was turned down to be tested .they told us if I still wanted to be tested , if I were to become pregnant that they would test the baby but that would not answer for 100 % only if the baby tested positive would I have known about my own genetic content before I was 18.

One fish, two fish, red fish….trout! Or skipjack!?!? Sometimes it is whatever fish bites for the day…

I am so excited right now I can’t sleep I couldn’t eat. We are going fishing today, saltwater bay fishing, one of my favorites. Fishing on the Texas coasts is where the majority of my fishing has been done over the last decade and it has been incredible. This past weekend it was my husband who out fished everyone else in the boat but I did reel in a large jelly fish who had attached itself to my piggy perch. But I have learned that some of the most impacting trips of your life are not about the catch but about the ride or trip of getting there and being there. I am still soaring from coasting the bays! I have so many incredible outdoor adventures from over the years, great memories filled with family and friends and they continue to grow. I am so thankful to have something to invest the good moments in. It makes getting through the rougher parts of life, with me my Huntington’s disease a lot easier.

When i was a kid we would all sit on the dock at the coast with my dad and often my moms dad, my grampa. We were allowed to fish with them as long as we didn’t drop our fishing pole into the water. And I don’t know why but between the three of us kids someone always dropped their pole into the ocean and we would have to go sit with my mom and grandma on the beach or at the hotel. The majority of fishing I did in my youth was river and lake fishing. Or the local catfish stock ponds which was lots of fun for the whole family, again many good memories before it closed down.

one my stronger memories of fishing with my dad as a child, we went fishing at the blanco river in the hill country of Texas. My brothers and I got to spend the whole day with our dad fishing, the boys caught little perch and I caught a good sized rainbow trout. My trout was the largest of the catches of the day. I asked my dad if I could take my fish home with us and he said yes. I told him I wanted to keep it alive and ask my mom if we could keep it, as we had a large fish tank in our home as long as I can remember, so thinking it might be possible, I asked my dad if he thought I could keep the fish at our house in a tank or some sort of make shift pond. He did not say no and he did not say yes but made it seem like he was on board with the idea, he said we would bring the fish home alive in a five gallon bucket . So I filled the bucket up with fresh river water and loaded it into the truck and I would have to convince my mom to let me keep it. Which I was pretty sure would be easier than out fishing my dad had been. Not long after we loaded up in the pick-up truck and headed towards town. At that moment I was a very happy 7 year old. That day in the boonies with my dad and brothers, had been one of the best days of my second grade school year.

Later that evening when we got home, before my mom got off work; my dad called me in to the garage… He asked me if I had remembered what I had used for bait? I said yes, and he asked me if I wanted to see it again? I thought maybe he was talking about extra bait to feed my fish, and then he pulls out a chopping knife lobs the fishes head off and precedes to pull out the worm I had used for bait from the fish and says I found your bait! and that was my dad; his actions where classic undiagnosed Huntingtons

My dad had undiagnosed Huntington’s Disease With Huntington’s Disease the dysfunction of your brain is not having the ability for it to work right, it’s not able to correspond with other parts of the brain that control all functions of your body, mind and soul. At that time we knew nothing of what would prove to actually be several generations with Huntington’s disease in our family. Because of the Huntington’s Disease my dad’s “elevator ” – processing center of the brain was miscommunicating and he was not able to be the best he could be because the disease made his mind twist and contort and work in a way that Sometimes left us shocked or stunned

I wrote this last fall .still needs some work but thought it ready to post.

Family Secrets and Huntington’s Disease

This is the story of how my parents came to know what Huntington’s Disease was… An end to many years of secrecy in our family.

When my mom married my dad in 1979, there was one ” taboo” issue…that unknown to my mom or my dad, there were lots of hidden facts and mis-told “truths” about his family. At that point, what my parents knew or had been told about my dad’s biological father was that he had died in a bad house fire in January 1972. The cause of death listed on the death certificate was listed as “asphyxiation”, and it continues to state, ” inhalation of smoke and carbon monoxide, due to house burning”. We had been told that he was in a hospital at the time of his death, and he had been out on “pass” visiting his friends. We were told the night he visited his friends, the rest of the group left to continue the party elsewhere , leaving my dad’s biological father alone so he could rest on the the couch. While my dad’s father slept on the couch, a trash can fire some how started in the kitchen and quickly spread through the small 750sq.ft. house, burning more than 90% of the structure to the ground. What they had been told by the authorities that the couch my dad’s biological father had been sleeping on was burnt and destroyed in the fire, and that they had found my dad’s biological father’s body in the the shower, where he had apparently sought refuge from the flames. He didn’t call the authorities to report the fire, but instead ran to the bathroom to escape it . We know this because it was a neighbor who had called the fire in to 911. At the time, the assumption was given and allowed to perpetuate that he was intoxicated and not thinking clearly; and that he must have been smoking a cigarette and somehow started the fire. It would be much later before we knew all of the facts of the situation.

One of the other things that my mom and dad were told about his biological father was that, when he was a child, for whatever reason, he was “abandoned” by his mother and raised by her parents for the majority of his young life; and that his grandmother went “crazy” later in life and needed a chain link fence put up around her house to keep her from wandering the town. Later, we would find out that the reason they were trying to keep her home bound was because she would wander the neighborhood in either her knickers or even less. The other thing we knew for a fact was that, before my dad’s biological parents got married, that his father had been previously married and had a daughter before getting divorced. We also knew that, after having a few children with my dad’s mom, unfortunately their marriage didn’t last, and they divorced when my dad was a kid. His father married and divorced for a 3rd time also; so it is unknown and possible that he has more children out there. This was all the information, along with old black in white photographs, that my mom had access to when she married my dad; because, when they met, my dad’s biological father had already passed away.

In the early 1990’s, my dad’s full sister started acting weird at family gatherings. My mom asked my dad if she thought my aunt was a alcoholic, or perhaps abusing prescription drugs. My dad insisted that my mom was wrong, but did admit that he was seeing the same oddities in behavior in his sister that my mom was seeing. The next time we had a family gathering, my dad spoke to my my aunt and she very defensively said she wasn’t and would never take drugs and that she was not a drunk. After that, my aunt and her husband avoided family gatherings for a few years. She did call every few months; she always wanted to know how we were doing, but never offered any personal information about what was going on in her and my uncles’s lives. As time passed on, with each call, she would become more confused; slower in speech and thought. As time progressed, my mom and dad, along with the rest of the family, were convinced she was hiding something.

In March, 1993, my dad’s mom, my grandma, passed away from pancreatic cancer. Before my grandma died, she requested we all visit her so she could tell us how mush she loved us. My parents brought us over many times to spend time with my grandma in her last few months, but I was the only one out of my siblings that knew she’d been given a terminal diagnosis. She had each one of us come in and sit with her so she could tell us things she wanted to make sure were fresh in our hearts and minds when she couldn’t be here anymore. Although I can only attest to the conversations she had with me, we thought that the same reasons existed for the rest of the family as well.  After my grandma passed away, there was a large family gathering  to honor her life through a wake. We  assumed the somber mood was par for the situation; that the stilted and abrupt conversations were from grief and morning; but we later would find out that, with a few people in the family, my grandma had left them with more than a goodbye and an I love you. For example, she gave me a patch work patterned purse. She told me she was sorry that she wouldn’t be there in the future, but it didn’t change her love for me and the amount of pride she felt for me. We assumed that she had similar good byes with the rest of the family; but it would be a couple of years before my mom and dad understood the significance of the conversations my grandmother had with other family members.

In the meantime, later that year, my aunt and uncle contacted my mom and dad and wanted to have a family meeting with her full siblings to ask them what they remembered of their father, their mother, and their dad’s family to see if they knew any family history of illnesses that she didn’t know of… There was nothing my parents could offer that my aunt didn’t already know. They told us that the doctors thought something was wrong with her, but had not been able to find a cause; so now they were turning to a list of possible genetic illnesses. We told them we would pray for them; and, when they left, we told them to come visit again. What I didn’t have a physical explanation for, or the words of wisdom to explain or describe was what I saw in my aunt’s eyes… her large, normally beautiful eyes … darting around, looking over in random directions; combined with random little up , down and sometimes back nods of her chin.  Sadly, what we also didn’t know was that the stress of the disease would tear apart their marriage before either of them had a chance to know or to fight the disease with the knowledge of what it was.

My uncle was a great man; he stood by my aunt when I can only imagine from the perspective of my experience with my own mental, physical , cognitive and neurological symptoms, that living without any knowledge of Huntington’s Disease was a living hell. A daily battle of not knowing if it was going to be a good day or a bad. The strength it takes to stand there and have the person you love unable to communicate the love they had with you, knowing that slowly, with time, the bad days will become more and more frequent. I have thrown things, broken things, stabbed things, and attacked things and people; not only physically, but also and sometimes even worse, with verbal and emotional abuse against myself and the people in my life. And, unfortunately, the people I am closest to, ie my mom and my husband, receive the brunt of my dysfunction. This information I offer with the added fact that I am on meds, many meds, to help keep as many good days in my future as I can. Unfortunately for my aunt and uncle, they had no proactive treatment for the symptoms of my aunt, because they had no idea there was a possible family history of Huntington’s Disease.

Later in the year, when the holiday season was ringing with cheer, we gathered for our annual Thanksgiving  festivities .  After dinner, the men and boys went to the t.v. to watch football, while the women started the first round of dishes.  After the dishes were started, my other aunt, the oldest of their sibling group, asked her sister’s husband if they could talk for a minute. They  were gone for a little while, and when they returned, we could see that my uncle was visibably shaken.   My aunt and uncle left after making quick good- byes.  I know that my eldest aunt had a reason for her talk with my uncle.  My uncle and aunt were  already fighting the depression, o.c.d, hateful verbal anger outbursts, insecure irrational behavior and other things my aunt was experiencing that resulted in her spending the day yelling at, belittling, and accusing my uncle of not caring for her.  When his wife’s big sister sat him down to say that she didn’t know if the doctors he had chosen were going down the right path in treating his wife, what my uncle heard was that he was not taking good enough care of her.  He assumed that his wife had told her sister about their earlier fights, and was not in the mood to get a second dose of having his flaws pointed out.

We don’t know for sure if she told him about the Huntington’s Disease she had learned from her mom on her deathbed on that day, or if it was much later.  We don’t know if my uncle now knew of the HD, researched the marker test, and knew there wasn’t enough biological family left alive to do it, or if my aunt told him the whole truth much later.  What we do know is that his wife had the blood test in late 1995, almost as soon as it became publicly available, and he called my mom in March of 1996 to tell her she needed to look into the test for my dad.  He told her he had watched her struggle with my dad’s inexplicable bad behavior Thanksgiving of 1995, and that, because my aunt turned up positive for the genetic flaw, my dad had a 50% chance of having it, too.  All the crazy and hurtful things my dad had been doing were the exact same reasons my aunt and uncle’s marriage had failed. My mom was convinced by the end of the conversation that my dad had Huntington’s Disease. The long process that resulted in my dad’s ultimate diagnosis in August of 1996 was, for my mom and dad, just a frustrating and expensive formality. My mom’s anger at my dad’s family was probably, in part, a result of her anger at the disease; but she was also angry at the secret.

it is easy to see, in retrospect, that  Huntington’s Disease was the contributing cause of my dad’s great-grandmother’s, and his father’s, deaths; and possibly a contributing factor as to why his grandmother abandoned her son.

Because of the secret and the way the information was passed on, my mom found herself with three at-risk children ranging from preteen age to teenagers. From the first minute my parents were told of my aunts correct positive Huntington’s Disease diagnosis , they told us children of the impact it meant for our father and our uncle both being at-risk for HD; and also the fact that if either of them were to test positive, that any children they had would also have a 50% chance of inheriting the mutated gene. My mom believed that there is only one time for secrecy with Huntionton’s Disease, and that was right before my dad tested. She contacted their insurance companies, and they beefed up all of their life and health insurance policies. They told the truth on all applications, and were turned down for only the nursing home policy. They also bought life insurance policies for us kids, with the option for doubling the benefit twice as we age, regardless of health. My mom says that now the insurance industry has laws that are being made to stop genetic discrimination in some forms of insurance, but it is still better for an at- risk person to make sure their insurance is as good as possible before beginning any treatment, taking any medication, or being tested. When my parents did receive my dad’s results, they sat us down around the kitchen table to talk about it. They told us that it would only be by stopping the secrecy that this disease can be stopped. It is only by open and honest communication about HD that society can begin to understand and accept the victims of this disease.

After my dad received his positive HD results, my uncle decided he did want to pursue being tested. During the interview process, my uncle was turned down for the ability to be tested because the doctors said that he would not be able to cope with his results. My uncle desperately wanted to test positive; he felt that he had been the one who had run away and lived a crazy life, filled with drugs, sex, and rock-n-roll; and he felt he should be the one who would get the disease. My uncle had behavior and made choices in his life that did make people wonder if he had HD; but as time passed on, his issues got resolved and he never got worse, except from other health conditions that resulted from his former bad choices. When my uncle died, we had him tested for Huntington’s Disease. The reason we had him tested was not to satisfy our own curiosity, but because we knew he had at least one child that we were not allowed to talk about and who we never met or saw. Thank God my uncle’s results were negative; otherwise, we would have moved heaven and earth to find his offspring.

As a result of all of this, I began my quest to be tested at the tender age of 16. But that is a whole other story – to be continued…

A poem for my “HD” Family

My throat tight, I cannot breathe.

Yet I groan, I will not give in.

Paranoid delusions race through my head

in the dark vengeful color of blood red.

My brain littered with time bombs of

Psychotic obsessions waiting to be triggered

To explode to add chaos to the turmoil

In my already aching soul.

But I will not give in, for this is not me,

It is a beast named Huntington’s Disease.

My balance is failing,

I am often running into the rails of my life

Tripping, stumbling, and falling

Too often without my safety net in sight.

Knowing that the damage will progress until I am bed bound.

Leaving me unable to do the things I had liked best.

But I will not give in, for this is not me,

It is a beast named Huntington’s Disease.

The doctor says I am now slowly dying

With many harsh years before the end.

But what he does not understand is the life

This disease has brought me,

The family it has given me or

The life lessons it has taught me.

I will not give in, for this is not me,

It is a beast named Huntington’s Disease.

You are my mothers’, my fathers’,

my brothers’ and my sisters’ through this disease;

And even if we have not met I know that you understand more

than anyone else the joy’s and pains felt in an HD family.

The unjudging unconditional love that flows between

us is a source of true pure grace.

I will not give in, for this is not me,

It is a beast named Huntington’s Disease.

Each of you has a life lesson for the HD family and I hope I

learn them all before I get called home for my own judgment day.

I will carry your love and lessons even after you are gone

It will be with me and help carry me through to the sunnier days.

HD can take everything from me but I know

As long as I have you by my side I will survive!

I will not give in, for that is not me,

I am living my life despite this d*** beast named Huntington’s Disease!

a poem for my HD family – Thank you and I love you!!!!

written in October 2010

Unpeeling the layers of the onion in my head

There was a time in my life before we knew about my fathers Huntingtons Disease . That I just thought I was crazy because of some of the emotions I would feel at times. I was in middle school and had a serious delusional self hate for myself. Always putting in my head or thoughts that the people I was around didn’t want me there. That they disliked something about me and just had me there out of pity. It was not a new feeling I can remember feeling like this occasionally when I was in a large group as a child publicly or with lots of family.

But when I started going though puberty it became a daily issue. I also had started to have hot temper outbursts verbally abusive inwardly and outwardly and physically abusive to myself and to others. I am not proud of a lot of the things I did. But they were things that shaped me into the person I am today who I am proud of and do love

Adventually with therapy, learning about Huntingtons disease , medication and life altering choices to live well and be proactive in my treatment , I had the resources to better my life.

With out medication I have no balance in life mentally or physically . I have no access to a normal persons conscious  . It took years for my answers to come together so I could start to try to put my life together. During those years I was untested, unmediated and trying to grow from a pre-teen to a teenager. It was a time filled with many roller-coasters, some of which I had no choice to ride but others I threw myself onto with no ability to gauge the danger I was putting myself in.

What I hope to gain from writing this is to save some one else from having to go through the damaging roller coasters I put myself on while I waited to be able to get my answers. If I can help prevent the griefs and turmoils that tend to spontaneously combust in my life from scarring the next generation affected by Huntington’s DiseaseI will feel like I have accomplished something.

My story might make you sad; might make you laugh or cry; and some parts might even shock you. It is my hope that my sometimes brutal truth will benefit others living with this disease themselves.   All I ask is that you please don’t judge anyone in my story, each person has dealt with the drama that is HD to the best of their ability.

My Family

Ever since I was a child I knew I was different. I knew what was going on in my head  was going faster than the other people I knew.  I knew there was even I difference between me and my cousins on my moms’ side.  But my dad was different too. He had the same manic sparkle in his eyes as me. Also passing the manic sparkle to one of my brothers .  My dad  was  a lost wild child with baggage.  He had a devilishly handsome grin. He was  a cowboy by ethics with a rock-n-rollers ponytail .

My mom’s a family moved into the same neighborhood where  my dad lived while they were both in high school. My dad says he was smitten from the first time he saw her and her red hair.   My dad has always been the person who hears no but it doesn’t detour him from going after his goals.  He won the girl and they dated for the rest of high school , through college and the then got married…  And eventually that’s how I came around.

We knew family. We knew love. We knew faith. We knew hope. And in between all of this we knew drama. It seemed that the sparkle in my dad’ s eyes was always big and the emotion he felt  and showed 100% more  emotion than the next person.  The highs were great , the lows were scary and when he would  hit to the left or right he was as unpredictable as a bull.

Shortly after I was born my dad joined the navy and we moved out of Texas  as a family to California where he was stationed.  My memories begin about 2 1/2 to 3 year old.  Life was good for me on the beach I have very good memories of going and seeing my dad’s ship off to sail.  I can remember the firework shows. The different apartments and then the duplex  where we lived.   I missed my dad when he has gone for his work, many times for months at a time but I loved spending time with him when he was home.   Him and my mom were working on rebuilding  an old 55 ford truck and there was always grease  and oil somewhere. For me, most of it was good memories.  Although it seemed like each time he got back he was more disconnected. And we didn’t know any reason behind it and just tried to accept him out of love. 
The manic in his eyes was like an ember or a coal from a fire burning in his eyes and with each return the fire had grown.   But what we didn’t know or realize was that the ember was not growning but had begun a cycle of dying.  

My blog

First time for everything…  So this my first blog post …    Here is my goal I want to write a book about my experiences with Huntington’s Disease.  To share the good the bad and the ugly but to also share my desire to be proactive in my own treatment to live as well as I can with Huntington’s Disease to help me live each day to the fullest.  Thank you and God Bless!