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

For those brave souls who are at risk for Huntington’s Disease

I understand why.  If you don’t want to deal right now I totally get it.  It’s all situational but for my experience with Huntington’s Disease, which is rather short compared to some of you, I totally can see why you would want to wait to find out your test results. But I am asking you to consider a new approach to how you perceive Huntington’s Disease as a person who is at risk.

First let’s just come out with it how Huntington’s Disease is perceived today.  It’s ugly.  It’s downright trashy.  It’s embarrassing.  It hurts our feelings.  It hurts our family and friends.  It destroys our career and our professionalism. People treat us differently.  Our confidence is affected.  It hinders our ability to do the things we love to do.  It prevents us from expressing ourselves.  We have to witness our family deteriorate from it.  It kills the ones we love who have it…sometimes even our own children.

Why don’t we all shut ourselves away from the pain?  Should we lock ourselves indoors and hide in our bedrooms where we can crawl into our covers and bury our heartbreak deep inside?  It seems like an easy solution right?  Please consider that this only continues to add to the ugliness of Huntington’s.  Consider the fact that the longer we hide the more likely it is that Huntington’s Disease will take us completely by surprise.  If we wait too long, then it will be too late.

I understand how you might be feeling.  I need you to breathe in and out for a moment….slowly.

There is a saying that I personally live by.  It’s simple. “This too shall pass.”

And another:  “knowledge is power.”

As someone who suffered through cancer, I had to go through genetic testing, long periods of waiting, biopsies, mastectomies, chemo, radiation, drug therapy, hair loss…you name it.  I can tell you that hiding myself way from the pain was very enticing for me.   Then time passed.  I did what I had to do and now I am a 5 year cancer survivor.  I hated that point of my life but now I feel that I can close that chapter and breathe for a moment.  With that being said, I did not carry the BRCA gene for breast cancer…but I have a feeling that if my body knew how to grow cancer once then it probably will again…unless I stay on top of my personal health care.  So I continue to take my preventative medicine, stay informed on latest technology, try my best to follow my doctor’s orders, and maintain a healthy lifestyle.

I have come to terms with the knowledge that I carry the mutated gene for Huntington’s Disease.  But I also look at HD from a new perspective so that I have the desire to not let HD get the best of me.

Talking with some of my “at risk for HD” peers, I have heard so many sad and shocking statements due to the negative perception that Huntington’s Disease has:

“I’ve lived my life as an alcoholic or in a constant depression because I just knew I had Huntington’s Disease even though I never got tested for it.  It turns out my test was negative.  I’ve wasted my life.”

“I was pregnant and decided to have an abortion because I was sure that I had HD.  I was right, I tested positive.  But I am struggling with something unexpected: Now that we are getting closer to finding an effective treatment, I don’t know how I am going to be able to handle my past decision.”

“I’m too afraid I will get fired or I will not get a promotion if my company finds out.”

“I sleep with random dudes and I often ask them: How does it feel to be F’ing someone who might have a fatal brain disorder?  I know I have it…I don’t even care if I live or die anymore.”

“Nobody wants a relationship with somebody who has HD.  If I find out I’m positive, I’m never going to be able to fall in love, get married or have children.”

Yes, I sat a gave these people long hugs and words of encouragement.  I share their comments with you only to let you know that you are not alone if you share some of the same feelings or experiences.

Ok, let’s break down “the ugly”:

It’s downright trashy.

It’s trashy because so many people have let themselves go.  Down to the point where they have lost their family and their finances are out of control.  Many people turn to drugs and alcohol to ease the pain.  This negative spiral has turned this into a “closet disease”.  I feel that the more we are proactive about establishing our healthcare and support, the less likely we are to be perceived as “trash”.

It’s embarrassing.

If I had a nickel for how many times my dad embarrassed me in public?  I would be able to start my own HD foundation!  By staying on top of medicinal and overall health support, the more we are able to control our outbursts and embarrassing behavior.

It hurts our feelings.

As we share experiences and expose ourselves to what happens in Huntington’s Disease, we develop a better understanding.  This in turn will help us cope down the road.

It hurts our family and friends.

I worry about how much I have hurt my husband and son over the years and what they will remember of me once I am gone.  Again, I feel that by staying on top of my medicinal and overall health, the more I am able to control my outbursts and hurtful behavior.  My meds keep me calm, cool, and collected.

It destroys our career and our professionalism.

I struggle with this one.  I consider myself to be a very confident person who prides herself on her professionalism.  I am college educated and have years of expertise in my field.  My decision to share my situation with my employer has only improved my situation (I hope).  I have set myself up for a rewarding career in a position that I can handle for many years.  It is hard for me to gage where I will be in the next 5-10 years but I am leaning on the fact that there will soon be an effective treatment for Huntington’s Disease.  I will still continue my education and share my expertise with my colleagues for as long as I can.  I know that they have a lot of respect for me as I show that I take a tremendous amount of effort towards bettering myself professionally even though I have this mutated gene.  It’s not holding me back at all.  I will blog soon on how to openly communicate with your employer in a way that will help your career.

People treat us differently.

I haven’t noticed that anyone has treated me differently.  Sometimes I wonder but I’ve really tried to focus on what is more important:  Do the best I can with what I have.  That means that I get cleaned up and dressed every day, and try my best to have a great day.  I think that instead of people treating me differently, they instead admire my positive attitude and sense of direction.  When you are focused on yourself and what you need, you don’t even worry about what other people think.

Our confidence is affected.

Yes, I feel like my difficulty on “spitting out” the right words and my stutter have affected my confidence.  I think that I carry myself differently.  I don’t stand up straight anymore.  I have learned to not get so mad at myself when I screw up or stumble.  I get lost driving all the time.  I feel as if I am a good driver.  I’m a girl who likes to be independent and explore. I’ve just learned to not only print out directions and have a GPS map handy but I also give myself extra time.  If I do get lost or turn down the wrong highway, I don’t get mad anymore.  I’ve learned to cope…so now my confidence as a driver is different.  Not gone.  Just different.

It hinders our ability to do the things we love to do.

I went skiing a few years ago and noticed a huge difference in my balance.  I should have known that doing a sport that requires a lot of balance might not be a good idea.  Well, I ended up tearing my MCL and ACL that day.  No more skiing for me.  It’s a sad truth but I’ve learned to try to find new sports to replace the ones I can’t do.  I remember that my dad was able to golf for a really long time…as long as we don’t knock anybody in the skull with a club or golf ball…I say we hit the course!

It prevents us from expressing ourselves.

Wow.  I don’t really have a good piece of advice.  I do worry about this.  But I am also seeing tremendous advancement in communication devices and how we are educating the medical community on Huntington’s Disease.  I think that if we work with our speech therapists and we are cooperative, we will be able to communicate for a long time.  Creative expression through art and music are also areas in which we can explore.

We have to witness our family deteriorate from it.  It kills the ones we love who have it…sometimes even our own children.

This part is so hard.  I have so many family members that have tested positive and I can barely bring myself to call them on a regular basis.  It hurts to see how far they have progressed.  But I can tell you that there is so much joy when you hear positive news on their health situation or just hearing the happiness in their voice when you are able to call or visit.  It helps you appreciate the little things in life.  It helps you appreciate the time you have left.

My wish for those who are at risk to consider the possibilities of living a life “informed” instead of “in the dark.”  Huntington’s Disease is so horrible I know but now is the time that we face it HEAD ONIf we are at risk we need to be responsible.  If you were given a positive result for an HIV test would you go around having intentional unprotected sex?  I hope not.  So I ask you, please use your knowledge to stay informed of the possibilities of what can happen when you have Huntington’s Disease.  There are so many medical manuals and publications out there on what can happen.  I am saying that you do not have to be afraid anymore.  Take the facts and then “hang out with us”, your HD peers and we will show you how we cope.  We will share with you how you can set your family up for success.  There are so many great things that you can accomplish with your life even if you have a higher than normal CAG.

Breathe with me now.

I respect your privacy and your decision to live at risk.  But be cool and stay informed.

All my best,

Mackenzie

Surrounding yourself with happy, positive energy

I am amazed at the responses on last week’s topic!  Apparently this issue of inappropriate sexual behavior resonated with a lot of you (almost 1000 viewers last week and over 200 likes and responses).  I think that it’s helpful to know that we don’t all have to suffer with our issues “in the dark.”  I respect everyone’s privacy and I always just only share my own dirt.  Believe me I have plenty to share.  I think that I’ll blog about this topic again one day so we can go over some other ways to handle our sexual energy in good ways.

Another type of energy that I want to focus on today is the mental and physical health benefits of surrounding yourself with Positive Energy.  This type of energy is contagious I promise you (No, I’m not a hippie…I do yoga though …it’s awesome).

One of the biggest struggles I see with most HD families is the vicious “Angry, I’m giving up, stressed-out, shut the F up and leave me alone” circle that happens when the following scenarios exist:

  • The spouse or caregiver is so over-stressed that they are no longer “nice”. They may seem bitchy, they constantly nag, they are constantly yelling, or they are depressed. Now we can’t fault them…but we can help the situation.
  • The HD people lose their drive to do anything because whatever they do seems to either mess things up, seems half-assed, and/or causes the spouse or caregiver to go nuts (see above).
  • The daily exposure to the “Hell that is Huntington’s Disease” can start to cause you to become bitter.
  • Don’t forget that since this is a family disease….a lot of our other family members are living in a negative energy household as well.
  • And so our vicious circle continues….

One conclusion I’ve come to in the past few years (because I had to live with a very mean, bitter, angry spouse) was that I could not live like that anymore.  Period.  End of story.  I needed positive energy in my life.  I needed to avoid getting sick to my stomach every time I walked into my home.  The fear of getting yelled at or just hearing the negative complaints were sickening me …literally.  I also grew up living in a house where you always got a hug and were happily wished a “good morning”.  It was almost as if that great positive start to my day was something that I relied upon to turn the rest of my day into a positive one.

Sadly, I actually had to leave my husband for the first time in 10 years.  I promised that I would return if things got better.  They did get better and I did return…but it wasn’t just him that had to change…it was me as well.  I was part of the vicious circle and I had to do my part to make changes.

I have witnessed this in caring for my father (who suffers from mid-stage HD)….and I often hear this phrase mentioned during HDSA convention or other HD educational events….”Positive Direction” is the best way to encourage a person with HD to cooperate.  No nagging.  No yelling.  Just simple positive, encouraging direction.  Every day.  If you are reading this blog as someone who is a caregiver…you probably want to throw a shoe at me.  I’m sorry, please just hear me out.

When in a non-Huntington’s Disease relationship, if the vicious angry circle happens…often times spouses or partners don’t know how to erase the past and start over.  Too many negative things have happened to make things right.  In the case of an HD relationship and starting over…I highly encourage a “clean slate approach”.  I know this may seem hard but from the perspective of an HD person…I have memory issues…seriously.  I have forgotten most of the nasty things that have happened.  But mostly because so many positive things have come out of our changing some of our bad relationship habits.  Now that I am happier…it rubs off on my husband and he is happier too…now starts our happy circle…or whatever you want to call it.

Where do you find strength to convert your day into a mostly positive one?

  1. Avoid drama or people that love to create and/or talk about it.      I know you may say “Mackenzie, my life is filled to the brim with drama. How do I avoid it if it’s everywhere?” I say baby steps. Break your drama down into manageable pieces (Partner Communication, Finances, symptom management, workplace issues – yes I will blog about each and every one of these topics very soon). If someone you know wants to add more drama back on your pile….tell them that while you are working on getting your life together, you hope that they support you by providing positive encouragement only…and do your best to avoid them in a polite way.
  2. Avoid people who are “Debbie Downers”. I know that most of us want to be there for those friends or family members that need us. But sometimes, when you are trying to live life in a positive way…you can take a break from these people. Or just spend smaller amounts of time with them. Maybe you will be a good influence on them? Lead by example and don’t let them bring you down.
  3. Allow your caregiver/spouse to have time to communicate why they may have become “negative”. Take notes. Repeat back to them in your own words what they have communicated…essentially take as much time as you need to understand their feelings. Take time to write down some solutions together. My husband’s and my primary struggle was with finances. I used to spend way too much. I’ve racked up $25,000 in credit card debt that my husband didn’t know about. He finally found out and even though he didn’t leave me for being dishonest, he became a very bitter and mean person. He didn’t trust me at all. I had to do a lot on my part before he was able to start healing and forgiving me. This included paying off all my debt. I also share my credit report with him every 6 months. This is very humbling and embarrassing for me in many ways. But I have learned to accept this as my flaw and have learned to work on this in order to help my husband have a happier life.
  4. If change seems overwhelming to make happen on your own, work with a therapist or trusted friend to help you. Remember, some of us struggle with initiation…but that doesn’t give us a valid reason to give up. We just have to be creative and find a way to kick-start our positive make-over. (I am so corny I know)
  5. Spiritual Groups/Religious affiliations/Support Groups always have a great mix of positive people…make friends! These groups also have Drama Queens and Debbie Downers too…so be careful.
  6. Again there’s medicine out there that can help if you need it. It won’t take just medicine to help though, you really have to make an effort to live your life surrounded by happy and positive things.
  7. Don’t fake it but make an effort to smile and be courteous.   Just getting into a courteous routine in your home life will help move things into a positive direction.
  8. Find ways to create your own happiness. Don’t laugh…I actually have a “happiness list” that consists of 20+ cheap or free things that make me happy (ok-here’s my list: pictures of fluffy white bunnies, macaroni and cheese, warm fluffy PJs and watching movies, snuggling with my son, manicures and pedicures, cinnamon pop tarts, exercising, facials, Pookie-time with my mini yorkie, charity work, a soak in the tub, re-organizing my closet, burning a wonderful smelling candle, hot tea or cocoa with a friend, walk in the park, yoga, baking, painting). My memory issues are the reason that I have this list…it’s also good to share with your caregiver for when you are unable to communicate well.

I would love to hear from my peers on how they surround themselves with positive energy…..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

Inappropriate Sexual Behavior

With Valentine’s Day peeking around the corner, I thought it was be fun to talk about inappropriate sexual behavior and Huntington’s Disease.  Apparently people with Huntington’s Disease have a hard time controlling themselves.  I wanted to keep this topic as light-hearted and “PG13” as possible…but I am sending out a warning to those of you that may be a worrisome caregiver, a youngster, a devout Christian, and any other person who may have a weak stomach for this kind of topic…proceed with caution before reading…just try not to get upset please.

I have always considered myself to have a healthy appetite although some time in my early thirties it went from healthy to obsessive.  I found myself day dreaming at work preventing me from getting projects completed on-time.  Day dreaming at home preventing me from getting house work done.  I was flirtatious.  Flirting to the point where I would get myself into trouble.  As a married woman I find that I am very happy with my husband but there was something inside of me that lacked a “this is right and this is wrong” filter.  I also craved approval.  I was bound and determined to become a super-hot chick (yes, yes…I know I am super-hot).  The problem was, I was forgetting about the people that I loved and forgetting what was important.  I spent a lot of money on some plastic surgeries that were not necessary just to keep up my super-hot chick status.  Granted I had other self-perception issues given that I had breast cancer at an early age.  But I still kept going…I kept going until it almost destroyed my family.

Everyone’s sexuality is their own business.  However, if you are doing something that

  • is harmful to yourself mentally or physically
  • is harmful to your friends and family
  • causes you to lose your job
  • causes you to lose your marriage or other important relationships
  • causes you to be thrown in jail

…this is not good.

Here are a few ways that I have been able to calm myself:

  1. I am on an anti-depressant to treat depression. Surprisingly, this has cut my drive in half. It even prevents me from climaxing (sorry folks …TMI I know). I have found a way to take a “small vacation” in order for me to have an opportunity for release…but this was something that I cleared with my doctor first. For instance, I know that if I do not take my med for a full day…then by the next morning, I am ready to “rock and roll”. But I get right back on taking the med again that same day.
  2. My Ritalin helps keep me focused and on task. So if my mind is not wandering, I am not thinking about naughty stuff.
  3. I limit the amount of alcohol I consume. I am a horny drunk….yickes sorry again.
  4. I have the mouth of a truck driver…it’s not very lady-like. I try to keep my sexual innuendos “at bay”…but it’s so hard because I believe that I just might be the world’s funniest girl…no seriously I am. I just have to remember who my audience is. Will what I say cause my hubby to flip out? I have to remember that just because people are laughing, it doesn’t mean that they think what I’ve said is funny…it may mean that they are uncomfortable.
  5. I understand that some of my HD brothers and sisters out there in the world have issues controlling the amount of porn (and strip clubs) they expose themselves to. I say that your first level of advice from me is to openly communicate your needs with your spouse/caregiver. I know. This has to be very, very hard for a lot of you. Maybe you possibly can come a conclusion about the right time and right place for your “personal time”. Just remind your partner that this in no way hinders your feelings for them. It is not easy to share how or why this happens. You also have to understand that they may not agree to your request. It’s a constant battle but either you agree to cave or they do. Just try to amiably compromise somehow.
  6. Beware. Obsessions often play a part in sexual inappropriateness. We will definitely revisit the topic of obsessions in another blog. I have quite a lot of experience in this topic. Obsessions are very complicated.
  7. I have a hard time trying to determine how to handle myself when someone flirts with me…sometimes I think I may have misinterpreted it but I found a new way to handle the situation…It’s called “staying in control and redirecting the conversation to a normal non-sexual one.” I find that if I can be the one that “flips” the conversation, it gives me a tremendous amount of pride that I did the right thing.
  8. Therapy and Sexual Addiction support groups may be helpful. I say that any move that you take in positive and healthy direction, is a huge success.

Not everyone experiences this issue but if you do, please don’t use Huntington’s Disease as a crutch for doing inappropriate things.  If you are causing yourself or your loved ones harm…please take some time to put together a game plan with your doctor/therapist/caregiver to come up with a new direction for you.  I am someone who is now doing much better after struggling with this for over 6 years.  I may have to face my demons again but I know that I have the support I need to face them head-on.  My husband also knows what I struggle with.  I think because he’s “a normal dude” he at one time thought it was cool to have a nymphomaniac wife.  But I think now he understands that there is a much better “Mackenzie” and he supports my decision to stay better.

Now go on out there and be good!….but on Valentine’s Day go be bad with the right person.

I would love to hear from my peers on how they handle sexual inappropriateness…..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

HD Peer to HD Peer – A Call for Help

This week I was greatly honored by an invitation and was able to attend a Recruitment Engagement Workshop at CHDI in Princeton, NJ.

Attendees came to this meeting from all over the world including Canada, UK, and Scotland.  I was impressed by the dedication and the willingness to openly share information.  Among the guests were Katie Blatt from Teva Pharmaceuticals, Robi Blumenstein from CHDI, Devin Bonner from Huntington Society of Canada, Jeff Carroll from HDBuzz/Western Washington University, Chris Cosentino from Huntington ’s Disease Society of America, Mary Edmondson from Duke University/HD Reach, Joe Giuliano from CHDI, Melissa Grozinski-Wolff from Teva Pharmaceuticals, Olivia Handley from EHDN, Joe Kim from Eli Lilly, Tim McLean from EHDN, Maribeth Meijer from Huntington Society of Canada, Simon Noble from CHDI, Meghan Norman from Pfizer, Mackenzie Platten (Your Favorite Patient Advocate), Jimmy Pollard from CHDI, Rachel Vann from Lundbeck, Ottavio Vitolo from Pfizer, George Yohrling from Huntington’s Disease Society of America and Laura Zumpano from Pfizer.

The experience was very eye opening.  We need to start filling trial studies and improving the lives for people with Huntington Disease.  The underlying message was very clear THE TIME IS NOW.  My greatest fear is that no matter how many treatments might come our way, if we do not fill these trials, then pharmaceuticals may soon start to turn their attention to another cause.  This is not what we want to happen.  We need to keep them engaged.  Here is how I propose that we do this….

  1. “Enroll in Enroll HD” – You just have to. Please. We need you to come forward and at least register for this very easy once a year visit. It is really short and sometimes they can schedule it around other visits if you attend the same hospital for other doctor appointments. We currently have 4000 registered in the US…We need 20,000. This is a huge issue because this is how we also encourage CROs (clinical research companies) and pharmaceuticals to start trials. If you have been waiting or dragging your feet. Please make the jump and get involved. http://www.hdsa.org/research/clinical-trials-1/enrollhd.html
  2. I can’t participate in some trials because I don’t have chorea yet. If you find that you are in my same boat, then consider doing a mailing (or email or Facebook) using the following as a sample template:

A call for help.

Hello,

My name is Mackenzie Platten. I am the Northeast Ohio Chapter President for the Huntington’s Disease Society of America.  I also have a CAG repeat of 42.  I recently attended a very informative meeting at CHDI in Princeton NJ to discuss how to encourage people to enroll in the upcoming and current HD trial studies.  I am currently an Enroll HD participant and I am part of a pool of wonderful people who have dedicated themselves to the mission of this very important observational study.  This makes me very proud, however I am sorry to say that as eager that I am to participate in more trial studies, I am unable to due to the fact that I do not meet the criteria for some of the studies.  This puts me in a very nervous state.  I understand how long it takes for a drug to pass through the various trials in order to get approved through the FDA.  I am reaching out to my friends and family through the HD community (you are all my family) and pleading with you to participate in these studies.  The following is a list of studies that I do not qualify for:

TevaLaquinimod: A Clinical Study in Subjects with Huntington’s Disease to Assess the Efficacy and Safety of Three Oral Doses of Laquinimod http://www.hdsa.org/research/clinical-trials-1/laquinimod-for-hd.html

Teva – Pridopidine: Pride-HD is a Phase II clinical research study of an investigational drug called pridopidine in people who have a diagnosis of Huntington disease (HD). The purpose of this study to see what effect pridopidine has on movement, thinking, and behavior, compared to placebo (a capsule that looks like pridopidine but has no active ingredient), in people with Huntington’s Disease. http://www.hdsa.org/research/clinical-trials-1/pride-hd.html

Pfizer – Randomized, Placebo Controlled Phase 2 Study of the Efficacy and Safety of the PDE10a inhibitor, PF-02545920, in Subjects with Huntington’s disease http://www.hdsa.org/research/clinical-trials-1/pfizer-pde10a-inhibitor.html

**Please know that this request is coming straight from me.  No other company has asked me to send this letter.  I do this on my own accord.

3.  If the issue is travel arrangements or the ability for your caregiver to help you attend the trial study visits, then please let us know. We can work with your HDSA chapter or affiliate to help you and your caregiver with these items that may be small “road blocks”.

4.  Speak up – if there are things you think that HDSA/HDBUZZ/Pharmas/CROs etc. can do better to get you the information or to help you better understand, please let them know (you can always send your questions to me as well – I will connect you with the right contact).

I would love to hear from my peers on how they feel about the trial study enrollment issue…..please email me at mackenz76@aol.com or post to this site.

All my best,

Mackenzie

Instant Gratification

Instant Gratification:

I don’t really know if this is a symptom of Huntington’s Disease but I certainly have a problem with this.  If I see something I like or get the idea that I have to have it, I’ll find a way to get it.  It could be food, clothing, household items, accessories, plastic surgery…you name it. The problem doesn’t necessarily rear its ugly head until I find that I have spent my entire paycheck on things that I shouldn’t have. I also don’t share what I am spending with my husband.  That’s bad… or so I am told.  I finally paid off my debt but find it so hard not to rack up the credit cards again.

So where does this drive come from?  Why is my impulse control so “out of control”?

I know that people with Huntington’s Disease have a hard time with obsession.  I can see that if there is something that I want, I have a tendency to obsess over it until I have it.  The act of buying things or what I call “retail therapy” gives me a tremendous sense of happiness.  It’s like I have used my bad habit as a way to relieve stress.  I’ve forgotten all of the other areas of my life that are badly affected because of this need for instant gratification.

Eating reasonable amounts of food also is a struggle.  It’s like my taste buds are so happy that I totally ignore the fact that my belly is screaming “No more!”  Yes, the Oreos and Reese’s Peanut butter cups are my weakness.  Sometimes, I’ll even sneak them in the middle of the night.

So how do I figure out a way to control myself?

  1. As hard as it may be…I actually try to sit down and think about the pros and the cons of what I want. Usually this happens after I’ve already ate the entire bag of Doritos or purchased the $2000.00 Louis Viton….and I’m debating on whether to barf or to return the purse.
  2. My remorse …it’s gone. I don’t have any really. I guess this is where someone would say that I have a loss of apathy. Sometimes I say to myself “I deserve it, I’ve been through so much.” Other times I’ll totally forget the bad things that happened last time. In this step, I’ll usually have to refer to my personal journal containing the Top Ten Things that make Husbands Freak Out. If all signs point to “yes”…then I try to put it in my “Wish List” or ignore the box of sugar cookies.
  3. Keeping my mind occupied by filling my time with healthier habits…such as exercising. I have just started this up again because I took about 5 years off from running. 60 pounds later, I’m feeling a bit like a slug. But I am working my way into this new healthier habit…and I don’t shop during my lunch break anymore.
  4. Three years ago, I started openly sharing my finances with my spouse. Yes, I know that’s a hard step for a lot of us out there. If you live in a household where finances are managed by one person or you have split your accounts, this can be a really hard area to deal with. Yes, it could cause some marital strain. However, I have found a tremendous sense of relief by being honest. I share my credit reports with my husband and he has all the passwords to all of my accounts.
  5. When it comes to food…I just don’t know. I could use some advice on this still. Peanuts and chocolate always freaking get me…every time.

I would love to hear from you if you also struggle with instant gratification.

Keep your chin up.  We are all in this together.

Love, Mackenzie

Medicinal Support and Body Chemistry Changes

This week’s blog reflects a current struggle that I am having in regards to some body chemistry changes.  As a write these blog’s I often think of the ideas and suggestions that I make as a “suggestion list for my future self”….not only helping my friends and family but also reminding myself how to handle the stupid shit that comes along.  Typically, I am a very positive upbeat person. I feel that with the right balance of nutrition, exercise, structured/stress-free life style, and medicine, the psychosomatic issues that come along with HD can be handled.

It’s been a rough few weeks for me.  All of the sudden, a medicine (Ritalin) that I rely heavily upon to do my job was just not working.  It frightened me to the point of sending me into a mild depression.  Every night after work all I wanted to do was eat and then crawl into bed (I didn’t even take off my makeup or change into PJs).  Typically, I can tell that my Ritalin has worn off when I have trouble remembering simple words.  I cannot stay focused and I get easily distracted.  I will sit and day dream and not complete projects at work in a timely manner.  When I try to explain processes or discuss topics in meetings, I feel that I speak too slowly and lose my audience’s attention.

Listed below are items that I have chosen for myself that potentially can alleviate the situation:

  1. Reduce workload or extracurricular activities. I work full-time, I am involved with my son’s cub scouts and basketball, I sell jewelry as a side business, I spend 30-20+ hours a week dedicated to HDSA and my role as chapter president….I am an over-achiever that is over-loaded. My husband finally says enough is enough. Ok I surrender. I’ll keep you posted on what I am able to down size….it’s a really tough decision for me because I love being so involved. All I can say is, I’ve made a list and have started asking people to take over the things that I have to take a break from. My husband and son are top priority so I know that whatever I do, I’ll get to spend more meaningful time with them.
  2. Be honest with my family and people that I am surrounded by, that I am struggling….AND…that I am doing what I can to find a solution. This is important because I think that often people will say that they are having problems and they don’t communicate that they intend to try to make things better. This has a negative impact on your caregiver if you don’t fully discuss your game plan. For instance my husband had a bad feeling that I might be slipping into a bad habit of going to bed too early every evening after dinner. I explained to him that I needed time “to heal” and that I didn’t intend on going straight to bed every night. I think that most people would worry that I was falling down a slippery slope. I totally agree… but the main point is to be reasonable about “down time”. Everyone deserves to have a little down time. But don’t make it a habit and don’t take too much of it (unless of course you are advanced stages HD and have no choice). Keep in your head that you have responsibilities and that you are a part of a working-well-oiled machine called life. Others depend on you so communicate with them and do what you promise.
  3. Stay ontop of what’s happening. This adds to the above ….to do what you promise. But you can’t wait forever. As soon as you notice changes or others are mentioning that they notice changes…make notes in your journal. Make an appointment with your doctor. Be open to making some changes especially if your doctor and caregiver feel passionate that it will help.
  4. Don’t try to adjust your own medication. As hard as it has been for me this week….I have not taken extra Ritalin. It’s killing me because I am really having a hard time. However, I will be patient for when I can see my doctor. Often my HD friends will tell me that a drug is not helping or it’s causing negative side-effects (weight gain, inability to climax etc.) so they just stop taking it. This is the worst thing that you can do. Honestly, it took me a full year to get “my balance”…but I knew that I couldn’t just think of it in terms of popping Advil for a headache…I had to commit to taking it every day at the same time. I had to work closely with my doctor to find the right amount to take for me…and the right time of the day to take meds also plays an important part of your balance. It’s all different for everyone.
  5. Think about other life-style changes that would influence the sudden changes. Write down in your journal anything that you have changed about your routine that could have an impact on your body chemistry. For instance, with the New Year I have decided to exercise every day for at least 60 minutes, quit smoking, and change my diet so I can lose weight…all of these I am sure added to my new struggle. I am no medical professional but I feel that the reduction of caloric intake and nicotine also definitely effected my mood. I am trying so hard to do the right things to be healthy but maybe I should have planned better (with my doctor) before I started changing things around. I encourage positive change but I also caution you to consider how to make these changes with the least negative impact as possible.
  6. Don’t Freak Out. Sometimes your psychosomatic health can change because of temporary stress or environmental influences….once the environmental influence has been eliminated or the stressor has been removed, things may go back to normal. For instance Christmas this year almost made me have an emotional breakdown. I had to keep myself cool and calm. I had to keep telling myself that this was temporary and that I would probably feel better after the holidays.

I would love to hear from my peers on how they handle medicinal or body chemistry changes…..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

Face to Face Social Interaction

In today’s society, people are more likely to communicate via computers than traveling to see someone face to face or even making a simple phone call.  People are more likely to use the ease of Birthday Messaging in Facebook instead of hand writing a note on a card.  This is becoming the norm and as a method of social interaction, I feel that we are losing a large piece of ourselves and what makes us uniquely human.

As someone who suffers from Huntington’s Disease, my own feelings of embarrassment add to my desire to hide away in a hole with my tablet, using Facebook to sugar coat my life.  I edit my family pictures or my “selfies” so I come across as being a woman who has it all together.  My “new stutter” and very apparent loss of vocabulary…or inability to find the right words to say, makes me so embarrassed to even say anything at work or in social situations.  Those who know me, will attest to the fact that I am very out-going and out-spoken.  My husband often complains that when I don’t attend social get-togethers with him…people are complaining that I never come out to see them.  It has a negative effect on him and on our mutual friends.  This was never my intention but as I look at my life and how long I may have in this world, I have a very difficult decision to make.  To go out or to stay home.

Today was a weird day at work.  I was disappointed in our department manager for forgetting two birthdays this week.  I reminded her on Friday of last week and when my co-workers birthday arrived and no cake or card was presented,  I felt an extreme sense of anger.  I felt as if she was very disrespectful.  I felt as if she essentially was saying “I’m sorry, I’m too busy for you.”  I explained that others in our department as well as myself felt that celebrating birthdays was an important way to maintain our social interaction.  Being in an Accounting department can be dry as it is.  If getting 15 minutes a month to celebrate combined birthdays enhances our overall department morale, isn’t it worth it?

But how am I acting any differently when I fail to take time to go out and see my friends and family?

I try to send emails and Facebook Messages as often as I can.  I have never been a “phone” person.  I get too antsy to sit and listen or engage in conversation.  Honestly I feel that when I am sitting around a table with friends,  I have a hard time sitting still (even lengthy work meetings are torture).  I am worried that I come across as being rude or unsocial.  It’s hard for me to explain to my husband that this happens to be one of the reasons why I don’t come out as often as I should.

I know that some of my HD brothers and sisters can’t even drive themselves and they are at the mercy of their caregiver.  But I would like for you to consider the benefits of Face to Face Social Interaction and consider these ways to help give yourself a little “kick in the pants”:

  1. If you haven’t taken a bath all week, this gives you the perfect opportunity.  Do something good for your health.  Grooming is an important part of staying healthy for as long as we can.  This is important as we all want to be alive and healthy for when the treatment for HD comes.  Feeling clean also has a positive emotional effect.  Take a bath or have someone help you get showered-up.
  2. If you ever have gone to an event or visited with family just because you “knew it was the right thing to do”….i.e. going to your second cousin’s baby daddy’s birthday party. Keep this up.  It is the right thing to do.  I know that everyone can’t always make every thing, every year….but at least make an effort.  It may be an event that turns out to be unexpectedly fun.
  3. Try your best to not be embarrassed about changes in your body or language that you can’t control.  I have a hard time with this still.  I know that inside of me is a very beautiful confident woman but outwardly, I feel am appearing a little more “trashy”.  I don’t sit up straight, my hair is crazy, my face lacks expression, I clench my teeth.  I have to get over this. Self image is really hard to overcome.  I think that my only advice is to call a trusted friend and have them help you get ready ….just try your best to keep it together and in the long run remember that it doesn’t really matter…the benefits of being around people will out-weigh your insecurity…I promise.
  4. Some people have shared with me that they have incontinence issues and they feel that they can’t be anywhere with out a bathroom nearby.  I say…it’s ok…pee happens to everyone.  Yes, Shit Happens.  Lord knows that a full bladder and a cough or a hard laugh will occasionally make me have to look through my purse for extra undies.  It’s ok.  The 6 P(s) come to mind…”Previous Planning Prevents Piss Poor Performance”….or in this case think 4 P(s)….Previous Planning Prevents Piss. Pack extra wipes, undies, incontinence pants…these are getting really cute lately.  Stay on top of your body’s internal bathroom clock.  Make sure to “try” before you go on long trips.  It’s ok…we are all human.
  5. Remember that the written word can never express the full nature of what you are trying to communicate.  Face to face communication will allow this to happen more effectively.  Also, as HD symptoms progress, it is typical for us to misinterpret something…even facial expression!  It is still best to meet face to face with someone especially if it is to communicate something very important.  For those of us that can no longer use verbal communication, using a communication device is very helpful.
  6.  Pack a bag of things to make you feel comforted if you start feeling anxious.  A warm fleece jacket, a book, some snacks…anything to distract you from being anxious or antsy.  I find that if I start showing people the pictures on my phone, I feel more relaxed.
  7. Keep outings simple.  I used to be the Martha Stewart type where I had to make the perfect dessert or side-dish for an event.  Now, I lack the attention span to cook well.  If I bring a bag of chips to share and keep the visit to an hour or so, I feel like I have made “My Appearance”.  Sometimes I want to stay longer….and that’s ok but if I at least think to myself…I’ll go for a bit and I’ll keep it simple….it at least gets me out the door.
  8. Remind yourself that some people just don’t care for dirty jokes or foul language.  I have a mouth like a Longshoreman…or a truck driver…whoever you may know that has a tendency to say naughty things…uh…that’s me.  Sorry I have no filter…I cross the line.  I hear it’s common for people with HD.  I have to remind myself at work that when in the Accounting department, I have to be an angel…in the IT department I can be myself.  My advice is to know your audience.  Listen to what your friends, spouse, co-workers tell you….if you are getting “TMI!” shouted at you….hold your tongue and apologize.  Don’t be embarrassed.  Just take the extra effort to be polite.
  9. Just your presence is good for those that are around you.  Make your time count with those who care about you.  Every day I tell myself that the last image I would want my husband and son to have of me when they think back to how I was….is that of a girl who would lay on the couch and type away on her cell phone.  I want to be remembered as someone who appreciated life and physical and social connection.

I would love to hear from my peers on how they handle Face to Face social interactions…..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