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

 

 

 

Inappropriate Reactions of HD Positive People in Urgent Situations with Law Enforcement or Authority

Inappropriate reactions in time of crisis or urgent situations with law enforcement or authority:

In light of Gene Veritas’ blog (http://curehd.blogspot.com/2015/01/police-killing-of-man-with-huntingtons.html ) and the recent report of the death of Mr. Pacini, I have decided to share a short story of how I also have acted inappropriately during a difficult situation with a law enforcement officer.

One evening, I was driving home, singing loudly, had my music jamming kind of loud, cruising at 40 mph down my 25 mph road in Middleburg Hts, OH.  I was about 10 houses away from my home when I saw the lights.   I don’t know what came over me….I know what to do in this situation.  I have been able to abide by the law and quickly pull over many times before.  But something inside of me made me want to just keep going…pull into my driveway…hide maybe.  I felt that maybe the police officer and I would be safer in the driveway.  So mistake one, I failed to yield to an emergency vehicle.

As the police officer got out of the car, I did as well….mistake two…getting out of the car when pulled over.

The office began yelling at me and said “What do you think you are doing?  Get back in the car and sit down.”

I walked up to him and made mistake number three…I got in his face.  My 5’8” frame had about 2 inches on him.  Being over-towered by a girl definitely ruffled his feathers.

I told him that I wanted to pull into the driveway for our own protection.  As I tried to calmly explain the situation, he attempted to talk over me.  Having someone yell at you without stopping to hear your point of view added to fuel to my fire. Not giving me time to formulate what I wanted to say in order to make amends….I became irritated was not respectful or apologetic.  I stood there yelling back at him while he threatened to take me in.  Mistake number four on my part.

My husband came out.  He was completely blown away at my reaction to this situation.  He approached the officer and explained that I had Huntington’s Disease.  The officer looked at me and said “Mam, you should not be driving if this is the case.”

I was enraged.  Not only did my husband use a very painful part of my life to try to get me out of the situation, but I felt that I had not exhibited any symptoms (except for some light psychosomatic problems).  I didn’t feel that I had to use the “HD excuse” yet having a very long time before I need to explain myself.  I also was mad at myself, embarrassed and surprisingly not willing to just step back and say “You know…I was wrong.  I am really sorry.”  I was mad at the officer for assuming that all people with HD should not be driving….did he even know what HD was?

Objectively, I look at my own life to try and share advice on what I should have done better.

When you are in a time of crisis or urgent situation with law enforcement or authority, and you are at risk or have a positive result for Huntington’s Disease, please consider the following suggestions:

  1. Breathe and take a few moments to think about your behavior before attempting to do something risky. We all have a “Fight or Flight” response and some of us don’t have the ability to gage which to do in certain situations.
  2. If you make a bad decision, you have the opportunity to stop and say “I’m sorry…I will cooperate.” Sometimes, if you make a bad decision, the situation snow balls into a series of bigger and worse decisions. Stop this in the beginning….or as soon as you can.
  3. Cooperate completely….repeat over and over to yourself…”if I stay cool, calm, and collected…this will all go much easier.”
  4. Prepare now on how you will communicate then. As symptoms get worse, it may be a good idea to practice how you will quickly communicate that you have HD…it could be something as simple as wearing a T-Shirt that says that you have it…You can Wear a medical bracelet. Some people feel that this constantly reminds them of having a positive result. I look at it as an opportunity to hold up my wrist and say “I have a medical condition!”….or I could simply say “Please! Look!” This may give my brain time to formulate a way to explain that I have Huntington ’s disease and how I really need more time to explain or to speak. If law enforcement officers are trained in how to deal with people that have HD, the situation will go a lot more smoothly if they know that you have it. You can also store the contact information for someone who can explain better in these situations.
  5. Get your law enforcement training packets from HDSA….they also have cards that say “I have Huntington’s Disease” with a brief explanation of what it is and who law enforcement people can call.
  6. If you have been “partying” remember to stay calm. Be cooperative. Don’t try to talk your way out of the situation because it may only get worse. Call someone who can help explain that it might seem that you are drunk or on drugs but that you really have a condition that makes you act this way. If you shouldn’t be driving a car…..don’t. Call someone to come and get you. My suggestion is that you really should take a more responsible attitude towards drugs and alcohol when you are on your own….even if I have a DD, then I try to cap my night at 3 drinks max. I am way too heavy to carry if I pass-out….and I hate throwing up in strange or public places….so it just seems logical.
  7. Don’t blame….learn from the situation and try to make it better. If you feel that you have been mistreated, think about and seek help on how you can educate those involved about what Huntington’s is…in a positive and supportive way.
  8. Keep tabs on yourself. If you hear people around you making comments about your decision making, write it down in a journal. As you meet with your psychiatrist, share these situations. There may be some medicine that can help you stay calm and cool.

I would love to hear from my peers on how they handle intense situations with law enforcement…..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

Initiation

Initiation = The action of “beginning something”.

I begin my blog with this simple topic as it seems fitting that my attempt to reach out and help those who share my struggles falls in-line with this very simple act of beginning something.  The “beginning of something” such as discussions about topics that scare people.  Topics that are sensitive.  Topics that are raw and dirty; exposing the truth about what happens in the minds of HD patients.

Please know that we are not all the same, however there are many similarities.  I share only to help.  Please be aware that I rarely sugar-coat my experiences.  I am very positive and up-beat in nature.  At times my enthusiasm may annoy you but I only hope that it in some ways inspires you to cope in a similar nature.

So let’s talk about the act of initiation.  I struggle with this and have often mistaken this struggle with a character flaw: procrastination.  But is it really procrastination?

Some may mistake the lack of initiation as laziness.  Is it really laziness?

Apathy is also a symptom that many of us struggle with…but in this instance, is apathy really the correct term for this struggle?

If you are unsure or you feel that you don’t share this struggle, take a moment to ask yourself the following:

  • Does my partner often begin sentences with “Why don’t you ever…?” or “Why didn’t you….when I asked you to?”
  • Does my employer mention that I struggle with meeting deadlines?
  • Do I have a hard time completing daily activities or simple tasks at home or at work?
  • Do I find that a full day has gone by and I may have laid in bed or sat in a lounge chair without accomplishing anything?
  • Are there activities that I used to enjoy that I no longer participate in?

If you find that you struggle with initiation like me, here are a few steps that I take to overcome this struggle.  Define what might keep you from the act of beginning the task at hand:

  1. Do you need Clear Direction?  The in-ability to multi-task and prioritize are other struggles that can add to my initiation process.  Do you feel that these may play a part in “disregarding” the importance of completing the task?  Do you say “Ah, I don’t know where to begin so  Screw it?”
    1. Sometimes I feel like I don’t know where to begin….like I have “writer’s block.”  As I find myself in this situation, I will ask my spouse or employer to give me some direction.  Sometimes just someone to help define a clear path may be all that you need.  This may be embarrassing for you to admit but it will save you mental turmoil in the long-run.
  2. Do you need to take more time?
    1. Don’t fault yourself or feel embarrassed that you might need to start writing down a simple “To Do” list.  At first, don’t take the time to write everything in sequential order.  Just write down everything that you have to do for the day.  Sit down, re-read your list, cross out the un-important stuff or “Clutter” and then prioritize your list.
  3. Do you take the time to define the sub-steps in each task?
    1. I have a background in technical writing so breaking down the steps of a job or work flow into “baby steps” comes very natural to me.  But many of you may over-look this very important piece of the puzzle.  I have loads of documentation that I put together as I complete a new project.  As I find projects that I am having a hard time remembering, I document those as well.  I’m in front of a computer all day so it’s easy for me to keep electronic lists and documents but you can always find yourself a nice binder to store hand-written lists too.
  4. Do you leave yourself breadcrumbs?
    1. As mentioned above, documentation is key to quickly performing tasks when you struggle with initiation.  But what about organizing the documentation/lists/sticky notes that I keep?  Will we remember where to find them when they are needed?  At work or in electronic format, you may consider a master “Table of Contents” for lack of a better term.  List each task and then create a note section as to where the document is filed.  This is especially handy when you handle the finances and other major household planning.  This is a great way to share information with your spouse/caregiver in the future.
  5. Do you get distracted?  Can I get an Amen?  I am in a constant state of distraction.
    1. I often refer to ADHD documentation.
    2. I keep my workspace clear of distraction and learn how to politely ask others to leave me alone while I finish a project.  As social as I like to be it often gets in the way of my day.  But I do take a little time to circle around to my friends and let them know that I still love them…well you don’t have to go that far.
    3. I openly discuss this issue with my psychiatrist and am taking medicine that helps….tremendously.  This medicine has saved my career.  I ask you to talk with your doctor about options that are right for you.
  6. Is it a task that at the time is was asked, you were unable to communicate how you felt about performing the task? Are you ashamed of uncontrolled movements that may interfere?  Are you embarrassed that you have forgotten the steps to complete the task?  Are you overwhelmed by your entire task list for the day?
    1. The key to overcoming these struggles is to take the time to communicate and share how you are feeling.  Take the time to write down the following:
      1. Task
      2. Why you are uncomfortable with performing the task
      3. Three possible solutions to help make performing the solution more bearable.
    2. Discuss what you have written down with whomever asked you to perform the task.  Listen to what they have to say and then share with them your three possible solutions.  Ask them if they want to make suggestions too.  Be open for compromise.  Be firm if you feel that this task will put you or the people around you at risk for injury (Both mental and physical).

I have many other ideas to list but I would love to hear from my peers on how they handle initiation struggles…..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 fair better than those of us that hide and live in denial.”

All my best,

Mackenzie