Being Mean

There are a lot of people with Huntington's who can have a problem with being mean to their loved ones.  Sometimes HD can completely change a person’s personality and other times it amplifies what is already there.  My father was a very kind and gentle man and as his HD progressed he became kinder and gentler.  In his case it amplified his existing personality rather than changing it.

My sister on the other hand became very mean; her personality changed for the worst, big time.  But the funny thing is that she was for the most part never mean to me but extremely mean to our sister when she lived with her for a year and during the two years she was in the care home before she passed away a year ago now.  I was never her power of attorney there for it was other sister who had to tell her no to all the crazy ideas my HD sister would come up with.   And because she never recognized her disability she blamed our sister for stopping her from all of the weird things she was wanting to do.

It is not unusual for people with HD to be unable to see their HD symptoms.  My HD doctor told me once that he had clients with severe chorea who would be jerking all over the place and when he asked if they had noticed any chorea they would answer, “No, I have been really lucky so far.”  So I know my sister was far from the only HD person who was completely unaware of her illness.

She worked way more years then she was capable of.  The people at her job could tell something was seriously wrong with her just by looking.  But it was not until we went to Alberta to pick her up and bring her back to BC for us to care for her here that we spoke to some her friends and coworkers and they said they knew something was wrong but had been waiting for my sister to share what was going on with her.  I explained organic denial and that she never would have seen her symptoms because of that.

Crazy that what can be obvious to everyone else can escape the one person who needs to get it.  My sister not recognizing her disability caused her that much more heart break in the end.  And she acted out in anger towards our other sister.  Now in all that time my sister was only mean to me once. We were walking into a restaurant and I made an off-handed joke and she turned in front of me face me and raised her hand to my face. I made a joke about look my sister was going to hit me trying deflect her action and to defuse my sister.  But inside I was going holy crap...she was going to hit me.

Anyway, in that three years my other sister cried many times because of our other sister’s meanness to her.  I spoke to her regularly about being kinder but it did no good because she did not recognize her behavior or forgot as quickly as she was told.  But I have no idea why other than that one time she raised her hand to my face she was never mean to me.  Was it because I was not the one who had to tell her no to having another baby, going on the Dr. Phil show, becoming a realtor and selling houses, getting remarried, going back to work, going back to her relationship, raising her son, all things she was incapable of doing? Was it that because she did not see her HD, she saw our other sister as just being mean by saying no?  There are other HD people like my father who are very mellow and a lot easier to care for then someone who is making you cry all the time, but the person with HD cannot for the most part control themselves.

There was a good example of the HD emotional flood gate on a video I watched years ago.  It gave an example of a farmer branding cattle and he would open the gate grab one to brand then open the gate again to let it go.  But suddenly the gat starts opening and closing on its own and the cows are getting mixed up and the farmer can no longer control the flow of cows. That is what happens with HD - the emotional flood gate starts opening and closing on its own and the person with HD can no longer control their emotions. They cannot react at all which is apathy, or they under react or over react depending on what their emotional flood gate is doing at the time.

I was having some issues with my emotional flood gate as well.  I was over reacting to things and crying too quickly and too often. I spoke to my friend and owner of this site Marsha Lynn and told her I was thinking about going on antidepressants because I had been more short tempered and was over reacting a lot. She told me that is not YOU.  You are not short tempered and you do not over react so if that is happening with you it is the disease and your neurotransmitters may need some help.

I went to see my nurse practitioner and went on lexpro back in June. I had refused antidepressants for years and had been taking St John Wort instead of the prescription meds. I was afraid of the side effects of the antidepressants for years and I did not want them to change who I was as a person or be some drugged out version of my old self or to have it just shut my emotions off.  I was told I had clinical depression back in 1997 after I tested positive for HD. But I was on the wort for years and at some point it became no longer effective so my chemical imbalance from the HD became much worse over time. That is why depression is part of HD because you lose the ability to make your own happy juice over time. So because I can not make my own I have to replace it chemically. Emotionally I did not feel depressed and was happier then I have ever been in my life. I have my family and friends close to me here, an amazing boyfriend, a sister who is now at peace and every reason to be happy and smiling all the time. But chemically I had bottomed out because of the HD.   I understand now there is a big difference between being emotionally depressed and chemically depressed.

Things have been going really good in my life for a while now and with the addition of the pills I am chemically balanced for the very first time in my life.  I had a lot of HD symptoms back when I was in school as well and because of a very stressful childhood I believe my HD came on a lot earlier.  I can see that I had depression as young as 10 years old, but because we did not find out I was at risk for HD until I was 28 there was no connection made till years later.

I was thinking it was the HD taking my energy all this time and it was the depression that was wrapped up inside the HD that was doing it.  I have a lot more energy these days which has been great.  For the first time in my seemingly entire life I feel "normal". Well as normal as I can possibly get because I am still me.  I had a problem with headaches and tiredness for the first few months I took them so I suggested to my NP that I half my dose which I did and that took care of that.

I am thankful to all the people in my life who love me.  I have a very large support network. I still do a lot of singing and enjoy playing the guitar.  I was thinking I need to write myself a new bucket list. There was a book I read years ago called 20 wishes I believe. And a woman writes a list of 20 things she has always wanted to do, to have or her absolute hearts desires. I wrote my list of 20 wishes back then. And a cure for HD and cancer were two of my wishes.

With the gene silencing trials they are doing at UBC we have the cure in sight. They shut off the bad gene in ALS and now they are doing it with HD as we speak. The first trial will be 18 months and involve 6 people who will be used to test the safety of the dosage amount and then it will open up to pretty much every one else with HD after they know the safest and largest amount they can give. This is what we have all been waiting for for many generations. Because of its rarity the great thing is the line ups will not be very long to get the gene silencing as there are only so many of us compared to any of the other neurological conditions.

Remember : "A pessimist sees the difficulty in every opportunity, an optimist sees the opportunity in every difficulty."