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 ON.  If 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:

Teva – Laquinimod: 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