Tired of Suicide Attempts

The last time I wrote on my blog was a very troubling time of my life. All of the sudden I felt like everything I thought I knew about Huntington’s Disease was total bullshit. Here I am, giving my life experiences and advice to the world and all of the sudden the suicide attempt by my father happened. My heart was broken. I could not write anything positive or meaningful. Who am I anyways?

It has taken me this long to gather my thoughts again.

My father is still alive but during the past 2 years, he has made another suicide attempt and has had suicidal tendencies or anger-outbursts sending him back and forth between the ER/psych ward and the nursing home. He is 99.9999 percent sweet and darling.  He walks around with a huge smile on his face and is still helpful to the activities director at the nursing home. BUT…that split second that he …well decides not to be happy…watch out!

I love the heck out of my dad…but I am tired. As soon as we think we get him situated, he “turns”. He flips into a very different person…depressed…lazy…sleepy….lethargic. We (My family) are all just getting through every day…one day at a time. I expect the unexpected. I have to remind myself, no matter how in-control you think you have things…don’t count on it. I am not a dramatic person. Thank God! However, I can imagine someone (less medicated than I am) going into dramatic bouts of crying and self-doubt. You can’t let it take you down. You do the best you can to give the person you are caring for a happy life. If they choose to end their life, it’s not you. I mean, it’s really not.

It’s not you. It’s not me. HD is so unpredictable.

I have also had some of my own struggles and it seems as if it is time to work with my doctors to get me on the straight and narrow again. Too much to think about but I am taking baby steps. I plan to share my new struggles in the weeks to come. They are not as bad as they have been in the past. If that makes any sense. I can still look at myself objectively and say; “Mackenzie you are being un-logical about this”. I am grateful I still have this ability.

I do have to say. I haven’t ever really felt the urge to try suicide. Its not anything I can even understand. What happens when I suddenly feel this way? I’m scared as shit! I don’t want that feeling. I love my life and can still find much happiness. When will I face this new “struggle”? Thoughts of suicide are very common amongst our community. Why in the hell does that have to be on”our list” too?  Its common but that doesn’t mean I’m like…Oh ok…I am going to be suicidal so watch out for me”. It’s not like me to feel that way. I don’t even know how to cope with that one. I look at my dad. He’s giving me the biggest smile and says that he loves me….I would think that if he really meant it, then he wouldn’t want to end his life right?

Uh. I’m tired.

But I have to say….I will never ever give up on my Dad. If he zigs, I zag. He is still really healthy.  I have to keep helping him fight HD.  He could still fall into that bucket of “future HD survivors”.  I want him to be in that bucket so bad.

I have to give a “shout out” to my husband Wayne. He is my biggest supporter and biggest “pain in the ass”. I love him. I hate him. I can’t live without him. He feels the same about me I am sure. I call him my hero. He protects me from so much and he stands up for me. He used to constantly yell at me but I know why (again another good topic for a future blog) and I could not have asked for a better husband. He is really trying not to be so “yelly”. I always second-guess my ability to be a good wife or a mother to his child. He kindly reminds me that I am doing just fine.

So, during the next few weeks I plan on adding more content to my blog. I am dedicated to spreading the knowledge. I know there are so many HD people out in the world that have “been there” or are “just curious”. Keep on living life friends!

 

 

Suicide and Huntington’s Disease

My dad attempted suicide today.

Sitting in the ER looking down at his frail body… his long eye lashes plastered up on his eye lips, snoring like he’s having the best sleep in 10 years, I am contemplating how he’ll feel when he wakes up. Will he be angry with our success at saving his life? Will he attempt to rip his IVs from his arms and flee? Have we taken away his right to somehow stop his suffering? Will we have to re-live that painful year (8 years ago) when we had to slowly medicinally “balance” my father through large doses of Hadol and Depicote at a 24/7 lock down nursing facility?

5 days ago my mom called me and said that my father was blaming her for poisoning him with her insulin. She explained that she has insulin shipped to their home for her diabetes. This week she had received a double order by mistake. My dad started blaming her for poisoning him and said that he wanted to be admitted into a nursing home. She asked me to come over and talk some sense into him.

Knowing how to talk to the “irrational” version that my father had become, I knew that I had to be creative. I pulled up a chair to kitchen table. I could see that his chorea had come back with full force as it often did when he was really stressed out. His hand tapping nervously against his leg, his eyes filling with tears of frustration. I looked at him and said “I don’t care how long it takes you to get the words out dad. I am here to listen.” He looked at me and said, “You promise you will remember.” He knows that I am struggling with my own memory issues. I grabbed a pad of paper from the kitchen and showed him that I would write it all down. He slowly and painfully explained his long list of woes…ranging from how he felt weak and could barely bathe himself to the fact that he was worried that mom could no longer take care of him. She had her own bought of health issues and he said that he couldn’t trust her to even order his medications for him. I asked him about his feelings towards her poisoning him. He said that he felt that way because he was having all of these new troubles …large difficulty with communication, weakness, trouble sleeping. I brought out my phone and googled “is insulin poisonous?” I showed him several articles how insulin is broken down in stomach acid and this is why people with Diabetes have to take injections for it to be effective. I told him that it wasn’t possible that he was poisoned and more importantly, mom would never do that in the first place. He explained that he was worried that my sister and brother in-law were going to kill him with a new gun that they just bought.

I suggested that he work with his doctor and mom to see if he could take a tweak in his medication. He agreed and made an appointment last Tuesday. We also discussed working with an occupational therapist. He looked at me and said “ I don’t think any of this is going to work. I am going to die this year.” I explained the new advancements in medical treatment trial studies. I said “Dad if you die this year, you could miss out on some very exciting treatments coming. Please hang in there!”

He agreed to work with mom and his doctors. That was 5 days ago.

Today he wrote a letter. It said “I don’t want to live anymore. Huntington’s Sucks.” He swallowed a full bottle of Resperidone, a full bottle of Divalproex, and a full bottle of Clonazepam.

I see a lot of my dad in myself. I love my life. Every single moment. I know that my father had this same love of life at one time. He prided himself on his ability to provide for his wife and daughters. He was our rock and our strength. What Huntington’s has done to my dad has robbed him of this love and desire. It has robbed him of his manhood, his human need to communicate, his freedom.

My mom and I talked today about how people would perceive my father after this incident.  I think that most would feel sorry for him.  My mom struggles with a huge sense of guilt and failure.  She explained no matter how many times people tell her “there’s a large risk of suicide attempts for people with HD,” it doesn’t matter.  She feels guilty.  She feels heartbroken.

Now he lays in a hospital bed and sleeps. What’s to come? I don’t know. Our story will continue and for now all I can do is open my heart to your words of advice.

Love,

Mackenzie

*Share with me privately through mackenz76@aol.com or comment through this blog.

Love,

Mackenzie

Life with Huntington’s Disease and Taking on a New Career

My long break from posting blogs is officially over.  After a few weeks of life changing events, I felt as if I have left my peers and friends for far too long.  My apologies.

Today’s blog reflects an overall statement about my work ethic and how I encourage others to strive for positive change and be the initiator that is often lacking when life gets stagnant.

This is my “Jerry Maguire”

I have decided to make a change in career that was very difficult for me.  Considering I absolutely adore the company I work for….actually it’s more than “adore”, OverDrive is my family and what I consider to be my second home.  The challenge that I face is that I am a point in my life where I feel the best that I ever have.  With a CAG of 42, will I continue to feel better as each year goes on?  I don’t know.  I do know that I have passion and an innate desire to make positive change happen where I feel it’s really needed.  My current role was not where I felt I should be and unfortunately, I felt as if I was underutilized.  I felt like the dork in the class room yelling “Pick me! Pick me! ME! ME!”

Well I wasn’t picked.  So I had to continue the daunting daily tasks that were completely different from what I am an expert in.  Boredom set in.  I lacked the challenge that I feel I need to keep my mind fresh.

So after a few years of “waiting and seeing” I decided to move on.  I felt as if I was ending a relationship with a boyfriend with whom I gave everything and he gave nothing.  That statement is not entirely true and I have to admit my perks at OverDrive where wonderful.  Yoga, Cross-fit, holiday parties, Zumba, beautiful work environment.  But I started to feel as if it was sugar coating over what was really important:  My feeling of self-worth and having to sit idly by and watch people struggle fighting fires that I feel should have been resolved …but it was never the right time to fix them.

For those co-workers I leave behind.  I have some words of wisdom for you:

Live every day like it is the most wonderful day of your life.  I am a stage 3 breast cancer survivor with Huntington’s Disease so seriously I cherish every day.  Do something wonderful for yourself and others around you.  Sometimes it annoys people when I am over-caring or happy (especially when they are in a bad mood) but who do you think sleeps better at night?  I do.  I can sleep through a Sharknado.  It’s because I go to sleep with a clean conscious. Don’t be annoying though…

Challenge the system…the right way.  When you make suggestions for improvement, always provide several ways that you think the issue could be resolved.  Remember that you will be rejected from time to time…or you may be ignored.  But I say “Keep on Keeping on”.  Don’t be annoying though…

I am sometimes told that I have too much emotional attachment to my workplace.  I say that my dedication to my place of business is what drives me.  I fight for my team and am the best cheerleader.  Try to encourage others around you even if you don’t get it in return.  Don’t be annoying though…

Don’t be afraid to admit your flaws or mistakes.  People will relate better with you if you don’t try to hide your issues.  If they are big issues that require some fixing, be genuine about your desire and efforts to fix them.  Don’t be annoying…be genuine.

Moving on…

Now I will be moving on to consulting and working from my home more.  This terrifies me because I hate working by myself.  I work better in an environment where there is people to collaborate with.  This is my new challenge, however I face an opportunity to go into companies and make positive change happen….better their workflows and business process, cut their data entry time down to minutes instead of days, encourage internal staffing professional development by providing the training for new systems.  This is what makes me happy.

As far as how I deal with my Huntington’s symptoms, I think I have a good game plan. My husband is very nervous about this change.  He knows if I am not on my meds, then it’s possible that I will be sleeping most of the day or getting distracted.   I have a long road ahead of me.  But I feel that for the past four years, I have learned what works and what doesn’t.  I get up each day.  Shower and dress as if I am going into the office.  I have skype to face time with my co-workers.  I schedule my meetings and business lunches like usual.  I push myself to stay connected to the outside world.

I have 3 weeks left at OverDrive and I’m feeling as if I am “losing my sense of belonging”.  I’m a little jealous of exciting new developments, future events and programs that I am no longer able to participate in.  My mentoring programs have to end and this breaks my heart.  But I have to let go and see what happens.  Maybe I can join OverDrive again one day when the right position opens up.

So now on to bigger and more challenging opportunities.  I leave my friends at OverDrive with a sad heart but also with the knowledge that I have shared my experience and expertise.  I feel as if I have a new world ahead of me and new adventures.

Ok, I’ll stop being annoying now.

All my best,

Mackenzie

Feeling Trapped, Overcoming your weaknesses, Gaining Strength and Persevering

Last night I was watching the Lifetime movie “Cleveland Abduction” about the three girls in my hometown of Cleveland, OH who were abducted and held captive for 10 years.  I couldn’t help but watch this movie with tears in my eyes.  As I tried to pull myself away, I kept seeing familiar images much like the actual events that took place 2 years ago.  My heart told me to keep watching this movie as I knew that I had to learn from this amazing story of survival.  It is an outstanding example of the strength to keep living through the worst “Hell” imaginable….and persevering through and making it out…escaping the evil that held you for so long.

Sometimes, I feel trapped like these girls.  Unable to get away from the ugliness that is Huntington’s disease.  It beats me down, makes me so exhausted until I can’t even keep my eyes open.  It robs me of my time with my son and husband.  I feel like there is nothing that I can do to better my situation.  But then I see amazing stories like the tragic events on Seymour Avenue and I think to myself “I can beat this.  I am tough.  I can get through.”

But it’s hard.  Sometimes, you don’t just have HD standing in the way, sometimes there are many other factors that are also weighing you down…money problems, marital issues, uncooperative children, other health issues (for me it was breast cancer), job woes…you name it.  All the shit can pile up so fast you can’t even breathe.

But we do breathe.  I remember back to a time when I was helping women in childbirth.  I was certified as a Doula and part of a program where I helped women who needed additional support through planning, birthing and caring for their child.  Many times during labor, the pain would get so bad that woman would cry “I can’t breathe!”  I would lightly whisper in their ear “But you are breathing.  You can do this.  Get your control back”.  I would lightly put my hand on their chest so they could see it rise and fall.  I would help them recover from the intense contraction….and then we would rest until the next contraction came.  We then would breathe together…finding a rhythm and focusing on that survival and the ultimate goal of bringing the baby into the world.

Sometimes we forget the pain of the past but when you have Huntington’s Disease, a new struggle seems to find its way into your life over and over and over again.  So, what do we do when we are feeling this way?

Drink lots of alcohol.

Just kidding…but yeah sometimes, that feels like the best option huh.  I would say that alcohol abuse adds more shit to the pile.  However, the tone of this comment is lighthearted and humorous right?  My point is, you have to have a good sense of humor to get through some of the crap that life deals you.  Know when to take things seriously though.

Find something that makes you happy every day.

That’s an order.  Everyday go out and take a few minutes to focus on something that makes you really happy.  A special coffee.  A picture of a fluffy white bunny.  Chris Hemsworth on the beach…whatever.  Find something.

Vent if you have to.

Cry.  Have a pity party. Punch a punching bag.  Run around the block.  Scream on the top of a mountain.  But then regain your cool.  Take a cold shower.  Take a nap.  Wake up ready to get back on track again.

“This too shall pass.”

Remember these words because they are true.  Tough life experiences come and go like labor pains….giving us a little break in between to catch our breath. Remember that there will always be good times ahead.

Do your part to make the escape.

When the time comes and you see your window, escape from the hell that you are surrounded in.  Don’t sit there and wallow in your own despair.  When the opportunity comes to get on that new medicine that may help your symptoms…take it!  When you have an opportunity to make good positive changes in your life, don’t delay.  Sometimes we have very small windows of opportunity that can quickly pass if we are not paying attention or we are too scared to get out of the hell that we are in.

Do not lose hope.

Focus on what you really want in life and believe that it can happen.  It’s what I am doing every day to cope.  I hold on to my hope and it’s what helps me prepare for that day that we have found the cure or treatment for Huntington’s Disease.  When that opportunity comes, you better watch out!  I’ll be punching through that locked door to freedom.

Freedom from this horrible Huntington’s Disease Abduction.

Financial Best Practices when you have Huntington’s Disease

In a world of “quick and easy” electronic payment setup and credit card points membership rewards, we often lose sight of what is actually happening with our own finances.  Add a layer of Huntington’s Disease related dementia and memory struggles and you can find yourself in a pile of debt.  As some of my own personal “oopsies”, I have list several areas to watch out for.  This is a list that many people might benefit from but I really think that it is worth mentioning to my peers with HD so that they start thinking about the way in which they handle their personal finances.

 

Nasty Marketing Scams to Watch Out For

  1. Do not sign up for anything that requires you to try a “trial membership” …then requiring you to opt out of an item or you will automatically be billed. Guess what.  The entity in which you are signing up for membership is banking on the fact that you will forget to opt out.  Also, they purposefully make it extremely difficult to cancel your membership.  I promise you that you will be wasting money on items that you may never use just because you may forget to opt out.
  2. Try to avoid memberships that are automatically charging your credit card or bank. Again.  The entity in which you are signing up for membership is counting on the fact that you will forget to cancel if you are not using the membership. Also, they purposefully make it extremely difficult to cancel your membership.  I promise you that you will be wasting money on items that you may never use just because you may forget to cancel.  If something were to happen to you, your loved ones may not know which memberships they have to cancel on your behalf.
  3. Avoid memberships that will automatically send items to your home, and then require you to return items if you’re unsatisfied.  You can bet that they are counting on the fact that you will forget to return the item or your busy life will make it too difficult to make a trip to the post office.
  4. If something states that is “free” on-line but they still want you to register your credit card, watch out….read the fine print very carefully because you could be accidentally signing yourself up for one of these opt-out type memberships….Nothing is free! Personal story: I recently had an issue with Experian. I was just trying to get a quick copy of my credit score to share with my husband so we could refinance our house. I accidentally signed myself up for a trial membership in the process of registering my credit card for what I though was just a $1.00 fee. I started getting billed every month and getting membership emails. When I went to go cancel, the website stated that you have to call a certain number. When I called that number it took me to a marketing team in India that was trying to sell me something else. I was beyond pissed.  Finally I was able to find another customer service number…but it wasted a few hours of my precious life and Experian ended up getting 25 extra dollars because of my stupid mistake.
  5.  Avoid sales that require you to use the store credit card.  Know what your APR is on every credit card and be honest with yourself about what you are “actually paying”.  After taking this into consideration, is the item really on-sale?
  6. Unsubscribe from all email communications. As hard as it may be for you to not the get latest sale information at Macy’s or Pier One….you will be better off. This type of communication is a constant temptation including direct links to buying items that you want on-line. It is also a distraction at work. I can’t tell you how many times I had to remind myself to not be tempted to open that email from Victoria’s Secret…I just had to find out when the semi-annual sale was going on and then it lead to browsing the on-line catalog….probably inappropriate browsing material when I was at work.

Creative Banking

  1. If you get electronic bills – make sure to also send paper bills to your house – just in case anything were to happen to you.
  2. Avoid setting up recurring payments unless you have an automatic reminder to make sure you have enough money in the bank. I use my Outlook Calendar to remind me to do everything from checking my available funds to brushing my teeth.
  3. Find a bank that offers a 24 hour grace period (24 hours to get enough money in the bank before you get charged the overdraft fee). Huntington Bank in Ohio has this beautiful thing and it had saved my butt so many times!…and it’s called Huntington Bank which is even more cool.
  4. Reduce complicated transactions. So if you have your Amazon account linked to your PayPal account which automatically deducts money from your bank account every month…you better be on-top of what the fuck is going on. Just sayin.
  5. Consolidate your debt so you only have to pay one source.
  6. Ask your caregiver to pay all of the important bills and make sure that you give them that money first before you spend it on anything else.
  7. If you have one, take advantage of your 401K as an option to save. I know that this sounds strange but I don’t even think about the money that is taken out of my paycheck that goes directly to this account. I hope I can use it for retirement if I don’t make it that far…it’s a way to pass on a bunch of money to my beneficiaries. Some people may say to put your money into an interest yielding saving account…I say that a savings account is probably an area where you will draw money from. A 401K account is very difficult to get money out of …thus making it more likely for you to not touch it.

Getting Rich Quick?  Not Happening.

  1.  Signing up for the next big Direct Sales Scheme? If it is something that you are selling, then you totally love it right? If you totally love it, I bet you a hundred dollars that you will spend more money that you earn on purchasing your “demo items”. You may also earn free items but you will always get nailed on shipping and handling. Always. So, if you think that this is a way to bring in a bunch of extra household income, then it’s probably not going to happen. Maybe it could be a good business if it is your full-time job. But if you have another full-time job and a busy social life…sorry…probably not going to happen.
  2. Do not invest a bunch of money on something without consulting your caregiver.
  3.  This includes stocking up on specific items because you think they will sell like wild-fire on eBay.  Remember, if you are not a skilled eBay-seller then, you should probably take it one baby step at a time.  Also remember that selling items take research, trips to the post office, and difficulties with unsatisfied customers etc.  Is it really worth the pain?  It may be too much stress for you.
  4. Also consider the pain of dissolving “your business” if something were to happen to you.  My mom had to take time to research the price of guitars, gold jewelry, baseball cards all because my dad developed these “get rich quick visions” and started mass-hoarding things he thought that he could sell.  He had them hidden in his office so we didn’t find out about these items until he was sick.

Consider hiring a daily money manager

  1. Have them challenge each item that you spend money on. They may find things that you forgot about such as if you have magazine subscriptions automatically deducting from your credit card.
  2. Their objective opinion may help matters. Having your spouse manage the finances is one thing, but trying to take financial advice from them? Yeah right!! Sounds like fighting words. Having another objective opinion in your life may help you see the light….

All of these suggestions are seriously as a result of stupid shit that I have done throughout the years.  I only offer up my experience to you as my humble way of saying “watch out”.  I still struggle.  On-line marketing schemes get me every time!  If you have it all under control…Congratulations!  Please share tips if you have experienced some of these things…or if you have success stories!

All my best, Mackenzie

Caring for someone with HD when you have HD

Double slap: How do you cope when you are caring for someone with Huntington’s Disease and you have it as well?  The turmoil of seeing someone you love deteriorate right before your eyes and knowing that you have this coming in your future.  How does that dig into your head and your outlook on life?

My experience is with the “beginning of the bad” stage of caring for my father.  There was a time when he had conjured up this fantasy of idolizing me and my sister as his “trophy women”.  He wanted to exercise with us to watch us.  He wanted to be out with us alone so he could have his opportunity to proposition us.  HD did that to him and I have forgiven him completely.  However, looking back to when he was un-medicated and out of control, I often think of when I am “so gone” that I can’t even control my feelings towards my own child.  I know that I love my son Logan more than anything in the entire world.  But will I ever mistake my motherly affections for some feeling that is totally and completely wrong?  Will I ever attempt to French kiss my own son?  This terrifies me and has definitely fucked with my head.

I know that people will say, you can’t think that way.  There are so many new advancements in science coming to help with these issues…but I say…I still worry.  It’s natural.  I love my son so much that I am willing to do whatever it takes to save him from my future self.  It took a while to get over this fear.

As far as the physical changes, having someone to care for that is a potential sample of your future…always staring you in the face…it can be quite exhausting.  For a short period of time when I was working out of my home, I would take care of my father during the day while my mom was at work.  He would sit in my office and just watch me work.  So here’s two people with HD…my dad’s ruminating about how much he loves me…and I’m ruminating about how much I think he’s lost his mind and that I might be losing my own mind.  It was a vicious circle.  And his movements!  They were the worst.  It was a constant distraction and always made me feel anxious.  I started getting little phantom twitches in my height of anxiety.  I also lost a lot of sleep because I knew what had to be done.

I finally had to plead with my mom to find him other day care plans.  That was hardest thing to do because I love my parents so dearly.  But it comes down to what had to be done to get my head straight again.  Sometimes you just have to break yourself away from being part of the care team.

Let’s take a moment to give a “shout out” to my mom Janet.  She’s been the primary care provider for my father for these past 10 years of “Hell”.  She has had to endure the pain and embarrassment of his mental episodes…imagine how you would feel if your spouse tried to French kiss your children.  My mom is an angel.  She still cares for him in as loving a way as if nothing happened!  God bless her. How it is that she never left him is only in God’s understanding.

So with an attempt to help this magnificent woman, I have found ways to cope while I am caring for my father.  These are some benefits I have found that help me get through the hard times:

  1. If you have mild symptoms of Huntington’s Disease, you have a unique understanding of what is going on in the head of someone that is unable to communicate every well. This makes you invaluable to the overall care of your loved one.
    1. My mom would often wonder why my dad was so fidgety or why he would just stand there and hover over her while she was doing the dishes. I had an opportunity to be my dad’s voice and explain to her that he was unsure of how to initiate a project or a conversation. I explained the benefits of using positive direction instead of yelling at him or nagging him. She found that after a while he didn’t hover so much. He was also happier and healthier.
  2. You can face your fears head-on.
    1. Seeing it head-on over and over gives you an opportunity to build up a natural protective numbness to the intensity of how sad this disease is. It is important to give yourself a break from time to time.
  3. You have an opportunity to educate yourself on ways to creatively adapt to your own changes.
    1. My dad is 66 and can’t climb stairs. My husband and I moved our bedroom downstairs so I can start getting acclimated to a safer environment.
    2. I see how medications and stress effects my dad. I can use his experience as a learning tool for myself.
  4. You have a unique connection with your loved one that can be very strong.
    1. Sometimes I tell my dad “I understand you daddy, like no one else.” He just smiles and nods. His eyes glimmer with little tears. We both understand each other without even having to share words most if the time. This feels really good.
  5. Helping in the care makes you feel really good about yourself.
    1. Feeling good about your involvement in caring for your family is very beneficial to your own mental health.
  6. As a team you can help educate others.
    1. I often take my dad to my speaking engagements to the medical community. He is the perfect example of what Huntington’s Disease looks like. Often is it a great way to show “the before and after”….me as exhibit A (the healthy business professional who will one day have serious problems) and dad as exhibit B (obviously HD afflicted). This gives my dad an opportunity to help me educate. And he always tells me if he’s in the mood…I respect his privacy. He has given me permission to share his story as much as possible in order to educate everyone on what HD really is.
  7. You can be a role model to your HD-afflicted loved one.
    1. My dad is so proud of my accomplishments and my strength. As I can be an example to him to get up and be the best I can be every day, he is inspired to stay healthy for as long as he can. We made a pact that we want to be cured together.

Wishing you all strength and health,

Mackenzie

Staying in the Workplace when you have HD: Find a Mentor

One of the recommendations that I give people when they have Huntington’s Disease and they would like to stay in their career for a long time is to find themselves a reliable mentor.  A mentor is a guide who can help the mentee to find the right direction and who can help them to develop solutions to career and communication issues.

Benefits of having a mentor include having:

  • an insider’s perspective on navigating your career
  • someone to bounce ideas off
  • a champion to cheer you on
  • someone to hold you accountable
  • receive critical feedback
  • exposure to diverse perspectives and experiences
  • someone to provide you with impartial advice
  • someone to boost your career prospects and growth
  • someone who has greater knowledge of career success factors
  • someone to help you to succeed if you do the work
  • access to your mentor’s network of contacts
  • insight to real-world experiences
  • a chance to learn specific skills and knowledge that are relevant to professional goals
  • increased capacity to translate values and strategies into productive actions
  • increased self-awareness and self-discipline
  • someone who may be able to help mediate in heated discussions

Where to start?  Maybe your company has a mentoring program?  Ask you HR director if they have such a program.  If they don’t then prepare a few examples of people within the company that you feel may qualify as a good mentor for you.  Request that the HR director talk with these potential candidates and their supervisor in order to determine if they have available time to mentor you.  Of course also keep your supervisor in the loop.

People with HD often have difficulties with time management, multi-tasking, project initiation or completion, memory, and communication.  Explaining to your mentor that having someone who can provide you with additional clear and concise direction will help you succeed in accomplishing your company’s objectives.  It will also provide additional support to your supervisor if they are not able to provide you with such direction.

“Reverse mentoring” or having someone “lower on the totem pole” mentor you may also be an effective strategy.  You would be surprised at the great advice and direction they may be able to provide.  They may have a new and unique perspective on situations and projects that may be very beneficial.

Meeting with your mentor should be fairly regularly such as twice a week or monthly.  Keep the meetings professional.  Spending too much of their time talking about your social life could hinder the overall objective of keeping you work-worthy and on-task.  It could also cause your HR manager to request that you end the mentoring relationship.  The meeting should be no longer than an hour.  Sometimes meeting at lunch, the gym or on the basketball court is helpful too.

Eventually consider becoming a mentor sometime in your career.  I feel that this gives me the opportunity to share my knowledge and expertise while I am still able to communicate.  It makes me feel valuable and confident.  It also helps me look at myself objectively.  If I am providing advice on good business practice, I better be following it myself.

Benefits of Being a Mentor

  • Satisfaction knowing that you are helping someone to achieve their professional goals.
  • Affirmation of professional competence.
  • Opportunity to build your leadership and management skills.
  • Opportunity to give back to your industry.
  • Opportunity to build an enduring career network.
  • Gain insights and different perspectives from future members of your profession.

My father owned a dental laboratory.  Towards the end of his career, he had alienated all of his colleagues and employees.  He had no one to work with except for his clients.  He work alone in a big laboratory…no one to talk to…no one to bounce ideas off of.  This is when he experienced the deterioration in his ability to see reason.  He conjured up the most absurd ideas and then ruminated on them.  And no one was there to stifle this strange development.  He got worse.  Then his dementia boiled over to where he took his anxiety, anger, and inappropriate thoughts out into the real world where he could harm people.

He’s better now but I want people to understand that there are ways to prevent these types of scenarios from happening.  You can keep your cool and stay in the workplace for a very long time.  Having a mentor can only help you as the disease progresses.

Thank you all for the wonderful comments!  Keep them coming!  Share my blog and please stay positive and hopeful.  We will all get through this together.

Love,

Mackenzie

Dealing with Anosognosia

Anosognosia, I don’t have it…or do I?

I remember talking with my father one day about how his twin brother was dealing with the symptoms of Huntington’s Disease.  My dad looked me in the eye and said “Your uncle says that he doesn’t have it.  He said he believes the Lord has healed him from Huntington’s Disease.”  I remembered sitting in silence for a moment.  “Dad you mean that he’s not going to see a doctor?”  He just shrugged.  I thought to myself how nerve-racking that must have been for my aunt.  My father was in his early 60s and had severe enough symptoms where he could not drive a car and he was having other psychotic episodes where he was not able to function in society without taking some medication to keep him stable.  The rumor was that my uncle was having the same type of symptoms.

I couldn’t understand how he could just ignore the uncontrolled movements.  How stumbling and falling all the time hadn’t made him stop to think about the cause.  I have strong religious faith and feel that sometimes we can be miraculously healed…but this time I felt like he was ignoring the facts.  And I felt that he was putting others in danger. Yes, yes.  “Respect others wishes to not know”….this is what I would repeat to myself whenever we got together at family functions.  How could I hold my tongue?  I love my uncle like he was my own father…he does look exactly like him.

Finally, one year at the national HDSA convention I attended a presentation on the symptoms of Huntington’s Disease.  One of the symptoms was called Anosognosia.  What?  This term describes a deficit of self-awareness.  Otherwise, a condition in which a person who suffers a certain disability seems unaware of the existence of his or her disability. Whoa.  It took me a few times of practicing to pronounce it correctly.

I finally could understand that sometimes people who have HD don’t even know that they have it.  This seems weird to me because I am someone who is kind of preoccupied with appearances.  I check the mirror at least 10 times a day.  I check at least three times that I haven’t tucked my skirt into my underwear. How could someone live without knowing they have a disability when it is so apparent?

I also wonder if people who are around me notice symptoms that I don’t.  I am not the type of girl to ignore such symptoms but if I don’t even know that I have them…then what?  I try not to over-think the progression of my disease but sometimes it sits on my mind for a little.

Does it help to have someone tell you?  If you have chorea and you don’t even notice it, what good does it do to know?   I suppose if I am putting myself in situations where I could hurt myself or someone else, this would be helpful.  But what if I refuse the information?  I can’t tell you how many times my father would say “Janet, I’m fine!  Leave me alone!”  What if I become this difficult?

As the years progressed, luckily my uncle came to terms with his condition.  Eventually you have no choice.  But it still worries me that there are others out there that may live in this darkness and not know any better.  They may not have anyone in their lives to monitor them.

I would love to hear from others if they have had issues with anosognosia either with themselves or family members.  Please share how you cope.

Best Wishes,

Mackenzie

Effective Communication with your Employer and Co-workers when you have Huntington’s Disease

Let’s face it, in today’s society we are all still suffering from post-partum-economy-crash-oh-my-god-I’m-gonna-lose-my-job-fears from the early 2000(s).  Some of us still have nightmares from when we were laid off from large down-sizing initiatives.  I worked in the mortgage industry…it crashed hard and I felt the pain…twice.  I was laid off 2 times.  But I was able to learn from this experience and learn to develop better “best practices” for communication and increased job performance.  I still fear getting laid off …every day.

Now, add on an additional layer of fear…how do I tell my employer that I have Huntington’s Disease and not make them subconsciously “freak out”.  How do I build a trust with my employer and let them know that I am committed to doing my part to stay healthy and productive?

With the GINA Act (Genetic Information Nondiscrimination Act – in the US), we are protected from being laid off because of our genetic information. But how do you explain the scenarios that arise when your symptoms are causing inappropriate or incapable side-affects that may otherwise have you fired?

Think about the following:

If I can’t focus long enough to sit in a 3 hour meeting, how does that make my colleagues feel?

If I am making inappropriate sexual remarks (just to be funny) at the wrong place and time, how does that affect my surrounding co-workers?

If my boss notices that I can’t complete projects on time, what kind of difficult position is he/she put in?

If I can’t hold a scalpel steady when I am performing brain surgery, how is that going to hinder the outcome of my patient’s recovery?

These are some difficult questions and this is a very touchy subject with many people.  But here I go…I’m gonna lay it all out on the line.

If you are diagnosed with having a higher than normal CAG repeat or you are at risk, you are responsible for the way you manage your career, your symptoms, and for the education of those who will have to work with you.

You are still allowed to have a career.  You are still allowed to have goals and continue your education.

You are responsible for educating your employer and co-workers on Huntington’s Disease when the time is right.

There’s no way around it.  You can’t expect people to just know what it is or what you are struggling with.  You also have to understand that there is a limit to what an employer can have you do in the work place if you are struggling.  But the way in which you communicate and show your genuine desire to continue to work for your employer will better your chances of continued employment.

So how do you know when the time is right?

  1. If people approach you on something you did or said that made them feel uncomfortable and if this happens more frequently than just normal everyday bullshit office politics.
  2. If your job performance review reflects comments that show that you are struggling in areas where you never had problems before.
  3. If you are put on a probation period or you are demoted, you might have waited too long. This is especially true if you haven’t taken the effort to communicate and educate.
  4. If you are sleeping on the job or constantly late for work.

How do I conjure up the strength to tell them?

What do you have to be ashamed of?  You are a genetic anomaly.   You are special.  All right, I’m being a little silly.  However, you should be able to look someone in the eye and say “I have a higher than normal CAG repeat and am at risk for developing Huntington’s Disease.  What that means for our working relationship is…”

This is all situational because everyone is unique but this is what I might tell my employer at my stage of the game:

I have a hard time multi-tasking

I have a hard time staying focused

My balance is not great

My memory is poor

I have a hard time communicating or finding the right words to say

I get antsy sometimes in meetings

My driving privileges will be revoked at some point in time

**please note that a job interview is not the right place to share HD info unless you have chorea**

The key to your discussions and the source of your strength should not be in the explanation of the symptoms of Huntington’s Disease but instead of how you handle or intend to handle these symptoms.  This is where you build trust between you and your employer.  You also have to be very genuine.  Don’t fake it.  For example, I would say “I have a hard time multitasking.  I have worked with my doctors to be placed on helpful medication and I feel that I am performing quite well.  I am always open to feedback and am willing to do whatever it takes to get back on track again.”  If you “fake it” or don’t really intend to follow through with what you are saying, your performance will show it…your employer will comment on it and after a number of times you will finally lose that trust.

How do you incorporate a “stay in the workplace for as long as I can” maintenance plan?

Politely request job performance reviews or something similar.  Some employers do not have a formal review process but you can ask them to give you periodic feedback of how you are doing.  A quick email sometimes is just fine.  Once or twice a year.  Your employer will appreciate your ability to take constructive criticism.

Share your job performance reviews with your doctor or care support…therapist, clergy etc.  This gives them the opportunity help you tweak your healthcare plan.

Follow through and document.  This is very important.  This is important for proof that you are trying to work through your symptoms.  Most importantly this is necessary when trying to qualify for long term disability/social security benefits.

Be proactive and knowledgeable of what may happen to someone with Huntington’s Disease.  This way symptoms won’t take you by surprise and it will be easier to cope with them.

Share ways in which your employer can help you adjust your environment so that you are safe and productive (adequate lighting/desk free of clutter/minimal distractions/move to first floor workspace).

How do I educate them on Huntington’s Disease?

Some people take information best in small doses.  Just don’t jam the info down their throat.  This may take a few months…a few years even.  It is also important to show them where they can get “the correct” information.  Whether it be on-line through HDSA or another quality organization…make sure that they are not shooting through YouTube videos watching somber images of people really badly afflicted.  This could send the wrong message.  You can suggest that they attend an HD educational event.  You can suggest that someone you trust come out to speak with them.  Don’t be upset if they decline your offer, however be upfront with them that you think your working relationship will be strengthened if they have a good understanding of what the disease is.  I personally had my boss attend a Celebration of Hope Gala where I was presenting.  I think it really impressed her and was a great way to show her the wonderful things we were doing to help find a cure.

How do I ensure them that I am not just using HD as an excuse?

My passionate and genuine communication with my employer has been the best route for me.  If you are noticing that your employer is complaining over and over again about something that you are constantly saying “well I struggle because of my HD”.  There is a problem here.  Either they are not listening to you and have not taken this responsibility off your plate or you are not being real with them.  You are not doing your part to manage your symptoms and have instead just relied on “the excuse”.  This puts a negative strain on your professional relationships and can end very badly for you.

What if I get “shut down”?

Sometimes people can be assholes.  I’m sorry but sometimes you have to face the facts that not everyone will be willing to work with you.  I suggest that ultimately, you build some kind of relationship up with your co-workers/employer. You will be the best person to judge whether or not they will handle the news well.  You never know though until you try.  Compassion comes from the most unexpected places.

How do I cope when I really have to step down?

I’m frightened of this part.  I don’t know how I will feel when I am told “Mackenzie, we just can’t have you doing what you’re doing.  You’re making too many mistakes and it’s affecting the organization in a bad way.”  I have nightmares about this at night.  The last thing I want is to be “the heavy”.  I do know that I’ve built a lot of wonderful relationships at work through many different departments.  I am hoping that they will have a fit for me throughout my various “Stages”.  My method of coping will be that I know that I did what I could to stay healthy and productive for as long as possible.

Thank you for reading.  It’s my peers that keep me going…especially when I have to write about really hard topics.  I know that we are all in this together.

All my best,

Mackenzie

Battling Your Obsessions When You Have Huntington’s Disease.

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

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

6 years.

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

We’ll, get to that in a bit.

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

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

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

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

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

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

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

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

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

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

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

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

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

All my best,

Mackenzie