Needing an Advocate

The time will come for each and everyone of us when we will need someone else to do our talking for us. A few months ago there was something that happened that made it clear I had gone from needing a part time advocate to a full time advocate. I relocated again last winter and had to go through the process of getting a new dentist and family doctor. I have run into problems in the past with dentists as they do not understand that I have to be medicated for them to be able to work on me. It is not safe to be doing dental work on someone who jerks suddenly and involuntarily, drills and sharp metal objects can be a major hazard. I did not have my usual prescription on me when I suddenly had a painful dental problem that I needed to have fixed. I tried to explain my need for medication over the phone but was told it was up to the dentist.

Unfortunately my family was away at the time so it was up to me to deal with this alone and to try to educate the new dentist. Well things did not go well from the very beginning. He was impatient and did not understand why I needed him to give me medication to relax me. He gave me very little time to verbalize anything. He did not agree with medicating me at all and in the end after taking several x-rays and examining me, he found nothing wrong. His attitude toward me was disdainful then, like I was some kind of drug addict making up imaginary tooth problems because I was looking for a quick fix.

So I waited until I received a new prescription from my HD doctor so that I had MY OWN drugs in hand before I made an appointment to see the only other dentist in town. Because of what had happened with the first dentist, my HD doctor put a note into my file from him for any future dentists that said it was at his request that I be medicated before I have any dental work done. The really crazy thing in this was that I was not getting any dental work done because I could not sit still for it and it was hazardous. It was my HD doctor who suggested medicating me years ago so I could get the needed work done and any future work done. So now that the note is on my file all I need to do in the future is ask my clinic to fax a copy of it in advance before I see any other new dentist.

Anyway, I saw the second dentist before the note was accessible. He had no problem medicating me to work on me and he also found the dental problem the first dentist had missed. One of my lower molars was cracked and was actually in two pieces. The inside and outside of the tooth were detached and had to immediately be removed the following day. I felt like going back to the first dentist's place and showing him my removed tooth in order to vindicate myself and restore my pride. But in the end I did not bother.

My family was very upset that my experience with the first dentist was so upsetting and highly stressful for me. My brother in law remarked that he thought they would have taken me a lot more seriously if they had been there to walk me into the office and if they had been the ones to explain my need for medication. He felt it would have had more weight coming from them, and I have no doubt that is 100% correct. He was the one who said it seems to me that in the future you are going to need an advocate every time you interact, because every time one of us is not there to speak for you that is when these things seem to happen. And that was such a true statement. So with every single future interaction he would ask me, in advance, before I got out of the vehicle, if I needed him or my sister to come with me. They are both always ready by the sidelines to jump if I need rescuing. In such a fast paced world a lot of people do not have the time or patience to wait for a delayed response.

I don't do well with having to verbalize my thoughts in a hurry, making quick decisions, having to explain myself, or any sudden change in plans. I can get locked onto some things and can have a hard time rolling with it when things suddenly change. It can really throw a wrench into my head. I just asked my HD doctor about it this July at my last appointment with him. He said it is called cognitive inflexibility. For people with HD when a plan gets locked in our head we are on a set path one way and then if there is a sudden or complete change of plans we are unable to process it and reset it in our mind. The best way to deal with that, he said, is to try to prepare yourself in advance and reprogram your brain to expect changes. That way when things or plans do change you are not as immobilized by it. I thought that was good advice.

My HD doctor also explained that the whole delayed response thing is because in our brains the place where messages are received and where messages are sent are two completely different places. So we receive a verbal message in the one place and then it must travel inside our brains to another place in order for us to respond to the message we have received. Thus the delayed response which is the travel time. In a conversation we would need to keep going back and forth. I personally like to understand why I do certain HD things. So much of the strange little things we do can make perfect sense once we understand the logic behind them. Sometimes the delayed response in answering questions is because my mind is retrieving the information.

I noticed not very long ago that I no longer recognize my handwriting as my own. It has become sloppy and hard to read. I still get those rushes of speed as well. It is almost like every once in awhile someone unexpectedly cranks up my speed setting and I am suddenly rushing. I make a point of slowing myself down several times a day. I can accidently wipe stuff out a lot easier when my speed rushes than at regular speed.

I have learned that having HD does not have to stop you from living life to the fullest or trying new things. There was a time that I had given up on learning new things because I was afraid of losing even more abilities to HD up the road. But I now see that logic was seriously flawed. Even if it does give me more to lose, in the end learning new things is soul food.

I have always loved singing but the first time I actually sang in public was three years ago and it was Karaoke. It actually started as a favor for a friend who wanted badly to go up on stage and sing, but he was afraid to go up there alone. So he asked me to go up on stage to sing with him. Our very first time we went a half hour early and went through the song indexes to find a few songs that we both felt comfortable singing and we handed in three song chits. While I was looking at the songs I had come across "Leader of the Band" which is my all time favorite song but seeing as my friend did not know it at all I had decided to sing it solo because I knew I could sing it well and strongly. Just try to imagine the look on my face when my solo song chit was not only the first one called of the four song chits we had handed in, but it was also the very first act/song of the evening.

I am proud to say I did not faint or bolt. I bravely stood when they called my name and then lifted my first alcoholic drink of the night and took about 5 good pulls off of it before I walked ALONE up to the stage. It was equally thrilling and terrifying.

I knew from my table of friends and the audience that I had done the song justice. Getting up there and belting out my favorite song was very powerful and it touched something deep inside me. In enjoyed it so much I went with friends weekly on Wednesdays for almost a year. I have sang a lot of song on that stage now.

A year later I was asked to join a Rock and Roll band as one of the singers. I cannot tell you how much of a boost it gave my confidence to be asked like that. I performed last New Years Eve up on stage with this same band. I sang three songs solo and one with my sister. My only limitation was that I had to sit on a chair to sing as I have a hard time standing still for any more than about ten minutes. My body can get really tired standing, but walking is fine. Singing loud and strong takes a lot of energy too. But sitting worked really well for me.

Another thing I have wanted to do since I was a kid was to learn the guitar. So as of a few months ago I took up playing the guitar. I can play two different songs now so I am happy with my progress there. I have made a few bucket type lists of things I would like to learn or experience. I have gotten quite a few off my original list. There is so much I want to be able to experience while I am able. I have also gotten back into songwriting and just recently wrote a new song. I am going to write a few more too. I have always wanted to write a book about my life story as my life has had a lot of strange and unusual things happen to me.

As of this year my family has been reunited after we've been living way too far apart for way too many years. Having them all back together brings me a lot of happiness and contentment. My Dad, two sisters and brother-in-law all live in the same town now, and I am talking like eight minutes down the road. We bought some family property that we are building a place on which is cool too. In the past I could go years in between seeing my various family members because we lived up to three provinces apart. I am blessed to have them right on my doorstep step.

After 22 years in an unhealthy and unhappy marriage I had fully resolved myself for a bunch of extremely good reasons to live the rest of my life alone when I left there three years ago. So I was quite surprised to stumble across someone extremely special. Someone who sees me first and the Huntington's second. He is a very kind, compassionate and gentle person. I really enjoy his company and his incredible intelligence and sense of humor.

So what I have now learned is that no matter what stage of HD you are at, it is never too late to learn new things, or leave a bad marriage, or learn to play guitar, or to start singing, or to go dancing, or to start a new romance. Never regret anything that made you smile or laugh. The many confusions in life are there to give us strength and teach us lessons. Our minds are like parachutes - they only function when open.

Remember--"A psychologically mature person looks for the positive in every situation, for no experience is entirely negative..."

Live well.