Battling Your Obsessions When You Have Huntington’s Disease.

Having ADD like symptoms is grieving enough when you are trying to make it through the day.  But then add obsessive compulsive behavior on top of that.  It’s a wonder I can hold a job for more than a few months.  It’s a wonder that I can even get out of bed each day.   There are many things about Huntington’s Disease that are horrible but this seems to be the one that often surprises me and catches me off guard.  This symptom is the one that happens that I actually can objectively say “Oh yeah, Kenzie-Girl has some issues.”

About 10 years ago, I didn’t have a clue that Huntington’s Disease was in my family.  I was pregnant with my first child and had a pretty good career and home life.  However, close to the end of my pregnancy I started ruminating about someone with whom I was close with.  Ok so it may be common in your life to have one or two “secret crushes” even though you may be in a fairly happy marriage.  But this was more than a simple secret crush.  It became a living breathing nightmare that kept me from living my life.  I couldn’t sleep, I couldn’t even go more than an hour or two without thinking about this person.  What I had was a horrible case of a severe obsession that would last me a total of 6 years.

6 years.

Outwardly, one wouldn’t guess that I had any issues at all.  I was very happy and excited with my new baby.  I shared my “weird feelings” with my sister and some girlfriends.  Remembering one day, I actually asked one of my friends “Do you think I might have post-partum depression after having the baby?”  She said that she thought I should seek help from a therapist.  I did.  My husband didn’t understand how the normally “happy Mackenzie” could possibly have depression.  He was just at a loss for words.  After a few weeks of seeing the therapist, I decided to stop the sessions.  I felt that my therapist had more issues than I did…but I did come to one conclusion….I had to tell my husband what was going on.

We’ll, get to that in a bit.

I had developed other sub-obsessions surrounding the main obsession.  I was working out all the time, and running to get skinny.  This actually helped me loose about 100 pounds however the goal was not for my personal health but it was to possibly receive approval from my target.  I dyed my hair.  I had plastic surgery.  I developed a pattern of flirting with men that reminded me of this person.  I created ways in which I could “accidentally rendezvous” with him.  I found myself doing things that you only hear about in movies…barring actually spying or going to his house…but it didn’t matter.  What I was doing took me away from my family.  Even if I was with them physically, I was still mentally in a bad place.

I was also struggling with my feelings for my husband.  The more I placed my obsession “on a pedestal”, the more I added fuel to the fire, and the more I felt unhappy with my marriage.  I had no remorse over what I was doing.  I just knew that it was wrong …just because.  I felt guiltless.  I blatantly told my husband one evening that I had an obsession with someone and I didn’t know if I loved him anymore.  It was horrible but I was at a point where I needed to just release these feelings.  There was a point in my life where I can remember that every day I loved my husband more and more.  That feeling was gone somehow and I was so confused.

Wayne was heart-broken but he reacted in a surprising way.  He told me he knew I was having problems and that he would do whatever it took to help me through them.  He loved me and he said that he would stay by my side as I worked things out.  I couldn’t believe it.  Looking back at the situation (and all the other terrible situations I have put him through) he should have just left my ass.  Thank God he didn’t.

As time progressed, my determination and hard work made an impact.  My “secret obsession” actually started to have feelings for me.  Then I found myself in a dreadfully weird place….I actually didn’t want a relationship with him.  What I wanted was for him to fall for me.  That’s it.  I wanted his approval.

The problem with obsessions are that they just don’t magically go away.  It takes time to get over whatever you are obsessing about.  Sometimes they are replaced with other obsessions.  Sometimes your mind just gets so exhausted that you just can’t think of any other scenarios to obsess about.  You essentially just get bored of them.

I knew that one day this obsession would end but I never knew that it would take so damn long or that the reason why I was having this obsession would be the Hell that would devour my life in other ways.  It would create new problems, new obsessions, new nightmares….living with Huntington’s Disease would take me to darker places than I would have never even imagined.  What happens in my head is not the “Real Mackenzie”.  What happens in my head gets placed there by something terribly dreadful.

I have been taking anti-depressants and Ritalin to help me stay focused. I pray that they work for as long as I need them to…still waiting for the HD treatment that will take these issues away.

The most embarrassing part of this story today it that I have to admit that I still have mild obsessions.

But…I have learned how to live with them.  I have learned how to draw them in so that they don’t affect my family and my job.  I have learned how to cope and how to forgive myself.  I ask for forgiveness from those I have hurt.

Sometimes, I even use my obsessions in good ways…I call them “extreme passions”.  I use these passions by bettering my career by obsessing over important projects….they help me stay motivated to work out and stay healthy….I put together fabulous charity events and work over 30 hours a week for HDSA…there are so many ways that I can focus my “screwed up” energy in a positive way.  Lately, I find that I have taken on too much though.  I’m older and my body can’t handle the stress I put it under.  So now I have to back down….but the obsessions stay and they make me feel like I am a failure if I don’t participate.  I am still struggling with this.

Now there are times when I wonder if I have gone too far.  But I rely on my close friends and family to help me stay real.  The most important piece of the puzzle?  Tell someone you trust what you are going through.  Tell them everything.  It’s embarrassing but you’ll find that you’ll have an enormous amount of stress relief.  They can also help you stay accountable for your actions.  Obsessions if contained and managed in a healthy way will be less harmful.  Don’t let them get out of hand and most importantly, work with a doctor to help get you on the right track.

I would love to hear from my peers on how they manage their obsessions…..please email me at mackenz76@aol.com or post to this site.

“Remember that there is strength in numbers.  Those of us that stick together and share, will fare better than those of us that hide and live in denial.”

All my best,

Mackenzie

Using your Positive Huntington ’s Disease Diagnoses as a Crutch

I don’t know if my husband thinks that I am being lazy or if he understands that I have legitimate difficulties. Do I use my disease as a “crutch”?  I don’t feel like I do but I think that maybe Wayne thinks this is true. When I try to explain that a certain difficulty is happening because of symptoms of Huntington’s, and try to explain how I know this is true, sometimes I feel like he shuts down and doesn’t want to hear it.  Or he doesn’t let it sink in far enough to let it be true.  So he yells out of anger and frustration.  I then feel like I am being scolded like a child.  Then I shut down.  But am I really not seeing an important piece of the puzzle?  Maybe I am using this “excuse” too much?

I have HD.  I have a right to feel the way that I do right?  I can validate the areas in my life where I struggle with medical factual documentation back-up.  So what is the big problem?

One constant battle that can occur between you and your caregiver or spouse is the plain fact that they know you as one person….but do they really understand that you are evolving into someone new as this disease progresses?  Can they understand that they can’t use the same methods of “motivation” to get you to do things that you used to have no problem in doing before?  Some scenarios may involve “boot camp” motivation (i.e. “Get on your feet Soldier!!!”), others may involve the more nagging type of motivation.

The other side of this scenario is our responsibility towards cooperating.  If you ask yourself, I’m I really unable to perform this task or am I just making excuses and you can honestly say “well, maybe I am being a little difficult,” then this is your time to make the right decision and just do it.

When I look back to other people that I know who appeared to use HD as a crutch, I feel bad because now I know what they were going through.  I would get so mad at people who tried to apply for social security and disability when I thought that they really probably didn’t even need it yet.  When I was a young girl, I was often upset at my grandmother for “going through men”.  Why couldn’t she just stay with the guy who really loved her and just be happy?  I now totally understand…but, it’s human nature to judge a book by its cover.  If outwardly, someone appears to be healthy, then we judge their abilities based on that perception.  It’s so hard to really fairly assess someone based on mentally disabling symptoms of HD.  It’s so exhausting.

I feel as if it’s a daily issue that I struggle with but I try not to let it destroy my well-being.  Truthfully, I feel that if we live our lives where we are using our disease as a crutch and we continue to follow this path, it will lead to our own self-destruction.  And, more importantly it incorrectly portrays a rare and fairly unknown disease.  We want to factually educate the community.  But there is a very delicate balance.

1 – We want people to take us seriously.  Bottom line.  This disease sucks ass.  It’s terrible.  I want everyone to look me in the eye and say “Yes, I understand you are struggling and I believe you when you tell me about the struggles you are having.  So let’s work together to make the best of things”

2 – We don’t want people to give up on us.  The old saying “crying wolf” comes to mind.  If we lose our support far earlier in the game….we are really going be screwed when the more difficult symptoms happen.  This is why communication and genuine cooperation is crucial.  Do not use excuses.  If you are a difficult person to live with, now is the time to stop being difficult.  Hug and kiss your loved ones every day and tell them how much you appreciate them.  Be genuine.  Be real.  Be cooperative.

3 – We don’t want to scare the shit out of people who are at risk for this disease.  I feel very strongly that if you are constantly dramatizing your situation and complaining that this disease is terrible around those who are at risk (i.e. your children, cousins, or brothers and sisters etc.), it is traumatizing.  We want to motivate them to stay informed.  We want to inspire them to keep a healthy and hopeful outlook.  I hate to sound so insensitive, but I’ll be honest….we don’t want people to hide in the dark when basically…we need them for clinical research studies.  Ouch.  I said it but it’s true.  I also feel that those at risk individuals will have a better life if they stay informed and hopeful.

Thank you for all the wonderful comments and words of encouragement.  I wanted to say that my blog has reached over 2000 views from 20 different countries.  Please continue to share my blog with those who don’t have a computer or those who you think may need additional education.

Please also follow my blog if you haven’t yet, that way you’ll get an email notice every time I post something new.  I’ll try to write once per week.  I have a slew of great things to discuss with you.  As always, I am not saying that everyone is the same but it’s so nice to share things that may be uncomfortable to talk about in other situations.  If there are special cases that you would like me to blog about, please let me know.

Best Wishes,

Mackenzie

Achieving Financial Stability when you have Huntington’s Disease

This is probably one of the most difficult topics of all to write about because it can be extremely complicated.  Sometimes you may have let the disease progress too far and your finances are out of control.  Maybe you have lost your job?  Maybe you have lost the support of a spouse?  In many cases, recovering control on your personal finances may seem hopeless.

I am not a financial expert.  I only can share my experiences with you on how I attempt to get myself on track.  I’m still working on each area of my life.  Financial Stability doesn’t happen overnight.  Don’t fool yourself into thinking that way.  But if you remind yourself of your goals, if you try your best to adhere to the rules that you set for yourself, if you get right back on track if you slip (I do), I promise you can make a difference in the lives of those who may have to care for you in the future.

9 years ago when I found out I had a CAG of 42, I decided.  Okay, it’s time to get my shit together.  I had debt that my husband did not know about.  I handled all of the bill payments.  My husband had no clue what bills we had and how to even pay for them as I had everything setup on my bank account.  I decided that I had to relinquish control to my spouse even though I knew it would cause serious marital strain.  This meant I had to share my “dirty little spending secrets” with my husband (who is a huge cheap-skate by the way).  I was terrified.  It was like getting ready to pull a Band-Aid off a really sensitive and hairy body part.  My husband is really sensitive and hairy so this really is a great analogy.

It’s so humbling when you are the bread-winner in your family and you have to relinquish control.  It took a lot of effort on my part to admit I had a spending problem and that even though I had a great job and was doing my part to support our family, I just couldn’t keep it together.  It was if I would forget to pay the bills, or I would forget about checks I had written and I would spend the money in our checking account.  Our checking account was overdrawn at least 2 to 6 times a month.  Transferring money from our savings to checking got more and more frequent and we ended up not even saving what we had intended to save on a monthly basis.  Our financial position was snowballing out of control and every time I had to ask my husband to transfer money from his personal savings, I felt like a dog hunched down with my tail between my legs.  The worst part of all…was that I never seemed to learn my lesson.  It kept happening.  I don’t know why…if I burn myself with a curling iron, I am more careful curling my hair the next time…why is it that I never stopped the downward spiral of poor financial management?

So it was time to get it together.  These are a few things that I did to help “set my family up for success” and alleviate some of my financial woes:

  1. I did my homework: One of the best books I’ve read to truly help get me on the right track to financial stability was a book written by Suze Orman: The 9 Steps to Financial Freedom. The premise of the book is that conquering your fears is the key to financial freedom. In other words, most of the limiting factors to financial success exist in the walls we’ve built up in our own minds, and achieving success lies in knocking down those walls. This book eloquently describes the psychological issues that arise when getting on track. As I read this book, I thought “This is perfect, I have a ton of psychological issues!” After I read the book I made myself a little binder with 9 separators for each step. This is where I put notes and samples of how I was going to accomplish each step.  There are many other great books out there to help you create your own plan.  Suze Orman has also written more up-to-date books that may be better even still.  But as someone who was faced with the sudden sad truth about my own terminal health condition….I needed a step by step guide to walk me through what to do.  Even though I am an eternal optimist…I even googled “I’m dying, so what do I do now get my finances in order?”  There was nothing.
  2. I identified what I owed in credit cards.
  3. I identified what I pay out each month. Break these items down into spending types like utilities, mortgage, car, food, savings, credit debt, health care, Logan’s needs (sports, school etc), entertainment, other.
  4. I found a way to payoff what I owe. I found that I usually just forgot to make timely payments so my debt kept increasing because of unneeded fees. I asked my husband to take over this. It’s the best decision I have made although it was a very stressful time for him.
  5. I identified spending type areas where I could spend less and then place more money into important spending type areas such as Savings.
  6. I identified ways to put money into hard-to-reach locations such as 401K accounts or IRAs. If I put money into a simple saving account, it became too easy for me to transfer money into my checking account. I had to put it in a location that made it difficult to get to. This helps when you have an urge to spend frivolously.
  7. I learned to stop spending money like I’m dying tomorrow. I’m still working on this one. I see something I like, I buy it. But I spend more time thinking about my purchases now.  pros and cons yada yada yada…I’m still working on this.
  8. I set up an Irrevocable Living Trust, Will and Durable Power of Attorney for Health Care. Three major items that will only help my family in the future. I have made the hard decisions for my future while I am still of sound mind (I know, some may say that’s questionable).
  9. I shared information. I made another binder to store important information for my husband. I know that this sounds like it would be a potential security risk but I had to think of a way that I could ensure that my poor computer illiterate husband could find out how to pay the bills. We keep this binder in our safe but it has all of our account numbers, passwords, phone numbers, credit reports, banking information, long term disability, 401K plans, life insurance, etc.  An important piece of information sharing is passing on the responsibility of financial control and teaching how to take over this task.  I taught my husband how to access our information on-line and how to pay the bills.  This took (I am not kidding) about three years to “get right”.  It doesn’t matter though.  He has it down to a science now.  He has helped pay off all of our debt and get us into a very healthy savings plan.  I cannot even begin to describe the feelings of relief that this has brought.  Believe me, there were plenty of fights and sleepless nights along the way.  But it was so worth it.  I now my husband has a new sense of pride over his accomplishments and learning how to use the computer!  He’s awesome.
  10. I’ve learned to ask advice, and to follow it. There are cases (even in my own life) where we think that we can “get rich quick” by making an investments in something that may be “over our heads”. I started a direct sales jewelry business to try to bring in more cash and I found that I had absolutely no time to devote to making sales calls or scheduling home parties. I thought it would be an easy way to make money but really it’s not very easy when you have to balance it with a full-time job and you have household and parenting responsibilities. But I couldn’t “see” that when I initially got the idea. I asked my husband for his permission. He had reservations. He knew that it was something that would take up a lot of my time. He told me to go ahead and start the business but I should have listened more to his concerns.
  11. I’ve learned to acknowledge my faults. Some things you just can’t change about yourself. I spend frivolously and I am forgetful. In order to prevent “my issues” from harming my family, I pay my husband for half of the bills first and foremost, I have all of our accounts separated, I share my credit reports with my husband, I take pictures of important bills that I pay (yes that’s what I said – pictures) and send them to my husband’s cellphone so he knows that I made my car payment. If I have recurring payments, I use my electronic calendar in Outlook to remind me to make sure I have money in the bank. There are so many ways that you can creatively prevent your struggles from harming your family. The best way is acknowledging those struggles.

I would like to hear your comments on how you have gotten your finances in order.  If you are really struggling and you do not have help, please reach out to your local chapter social worker in HDSA (in the US) or let me know and I will connect you with an expert who can help guide you.

All my best,

Mackenzie

Aggressive Parenting

*Warning: strong language content*

My topic for this week comes from a personal story about my father that I am sure many of you have similar stories and can relate.  I was about 16 years old and had my first waitressing job at Elias Brother’s Big Boys.  I was starting to drive on my own and was able to get a job that was further than biking distance.  The first few weeks were awesome.  I felt as if I had a little more freedom and a little more money in my pocket.  The only problem was that in most restaurants back in the 90s there was a little break room that was often clouded with cigarette smoke.  “Smoke breaks” were often a way for cooks and waitresses to “blow off” some stress.  Being exposed to the second-hand smoke was annoying at first…as it was really the only area where I could count my earnings for the night.  Soon I just gave in and started bumming smokes from people.  I never envisioned myself to become a smoker…it just happened but as a young teenager it was not something that I wanted my parents to find out.  Well, like most stupid teenagers, I thought that if I smoked in my bedroom through the window or if I smoked in my dad’s car with the window cracked, there would be no way that my parents could ever tell.  I was wrong.

Now, this story isn’t about smoking….it’s about the way my father reacted to finding out that his “perfect straight-A daughter” smoked.  A parent who is angry is understandable.  Getting reprimanded and put through reasonable punishment is understandable.  That’s not what happened.  And honestly this was the first time I saw something horribly different in my father. We were a family that didn’t know we had Huntington’s Disease….so strange behavior was really very mysterious and actually very damaging to my mother, sister and I.

I was in the break room at work when my manager called me into his office.  He said “Mackenzie, your father’s on the phone.”  I immediately thought something bad had happened to my mother or sister.  I couldn’t even begin to think why he might be calling me at work.  I picked up the phone and my father said “Why the Fuck have you been smoking in my house?!”  I was silent.  My father has always been a very loving and kind father and would rarely curse at us.  I could tell that something was different in his tone.  As he screamed at me and told me that I had to immediately quit my job and that he and my mother were on their way to pick me up, I could tell that he was having a hard time trying to formulate what he wanted to say.  It was as if he was so mad that he filled every other word with “Fuck” or “Bitch” or “Stupid”.

When I was gathering my belongings, my father stormed into the restaurant and started dragging me out of the door.  I struggled to not fall to the ground. He then started hitting and kicking me, trying to force me closer to the car.  Some of my friends and mangers from the restaurant came out to help.  My mother started screaming and crying.  I remember thinking, if he was able to get me in the car, then I was going to be beaten pretty badly when I got home.  I was not about to let that happen so I dropped to the ground and started calling for help.  Help arrived quickly and my father was pinned down by several guys from the restaurant.  The police came.  It was horrible.

My father spent the night in jail and my mother and I had decided not to press charges.  But that event was one of the hardest decisions that my mother and I had ever been faced with.  We are not an aggressive family.  We are a loving one.  Why would we ever expect this to happen? Now I know.  I see “a flicker” of it in myself.  I see it in my other family members who have HD, I hear about it in personal stories.  Aggressive parenting is a problem in the world of HD.

With this being said, let’s all take a deep breath together.  Just because it is a problem in some families, doesn’t mean that it’s a problem in all.  I have observed that it seems as if HD positive people are either “fiery and aggressive HD people” or “depressed and sleepy HD people”, and sometimes you can flip back and forth between the two types.  I also think that this aggression problem shouldn’t effect your decision to have children or to continue to raise your existing children.  The reason that I feel this way is that I know that there are ways to control our overly aggressive parenting behaviors.

Let’s take a moment to understand why this happens.  We all know the difference between physical and emotional aggression.  When we think about the verbally damaging type of parenting, think about hearing the following:

“You are being a little bitch”

“Nobody wants to be around you because you’re so annoying”

“You’re such a stupid little fuck.  I can’t stand you.”

“Leave me the fuck alone.”

With HD comes the problem with word formulation or “spitting out” what you want to say.  This is something that causes tension within ourselves.  Often we may pick stronger language terms to “fill in the gaps” because we feel that this will help get our point across more expediently.  Let’s face it.  “Leave me the fuck alone” is a lot easier than saying “Hi Sweetie, I know that is important to you that we discuss this right now however I’ve had a long day and I am really tired and we discussed this same topic like twenty times this week already…no you cannot sleepover Jimmy’s house.”

Because of our struggle with word formulation or communication, we let things build up.  I have a tendency to just “let things slide” with my son Logan when I should really handle issues as they happen.  My boiling point comes quicker now as I am getting older.

When boiling points are reached, this is when the physical aggression happens, or we have a hard time controlling our “Playing Bad Cop” vs. “Going way over the top and harming our child.”

So what do we do if we notice this happening…or if our child says “Mommy it hurts me when you…”?

Please take a moment to forgive yourself if you are having this issue.  This is something that you can change and make right.  So how do we?

  1. Take more time to think through how you will punish your child if they need to be reprimanded. Practice what you might say. Remember, the words that come from your lips will stay with them for a lifetime. No matter how many books or information that we may give them to better understand this disease, your words still affect their development. Do your best to do your best as a parent.
  2. Consider asking your spouse or partner to be “the bad cop.” I know this puts a lot of pressure on one person but if you find that you cannot “recollect” yourself after punishing your children, maybe you might have boiled over too far. It’s not easy to do but it may help prevent damaging your children.
  3. See your doctor and take your meds. Seriously. And… if your meds change, tell your spouse or partner. Any changes that could affect your mood, tell your partner. If I am starting my monthly cycle…I text my husband. It’s really the last thing that he wants to know when he is in the middle of something important at work but at least I gave him the “heads up”. He knows that I get very emotional during this time and sometimes it is best for our family if I just head to bed early. He handles homework time and getting Logan ready for school.
  4. If you don’t have a partner or spouse then you will definitely need to spend more time communicating your expectations with your children. Yeah right!…I know this is easier said than done. My son went through “Terrible Twos through Terrible Fives” and was not cooperative at all. I was also going through chemotherapy at the time. I just forced myself to get up earlier so I could give myself time to get Logan ready in the morning. It gave my brain time to wake up and prepare for the torcher of the screaming, kicking, toddler-Hell I had to endure each day. Having my husband get Logan ready was not an option so we hired my neighbor to come and get him dressed and fed in the morning. Hiring some inexpensive help is really a life-saver if you can do it.
  5. Parenting classes are a wonderful way to help get you and your spouse “on the same page” with how you both with reasonably parent your children. When you and your partner do not agree on parenting styles, this also places un-needed tension on the situation. It’s best when you both agree.
  6. Find healthy ways to relieve stress. When you find yourself in a healthy stress-maintenance plan, you will see that your steam is released and your boiling point is rarely reached.

Please remember that you are a good person and that HD is the evil that makes these terrible things come out in us.  Forgive yourself and ask for forgiveness.  Take the initiative towards becoming a better parent.  You can make things better for your family.  Don’t hide way and bury the past but face it and make positive choices towards having a healthier relationship with your children.  They too may be faced with being a parent and suffering with Huntington’s Disease one day.  Set a good example for them.

All my best,

Mackenzie