By Cameron Howard
To all of my family and friends,
I am writing this letter for many reasons: some of you I have lost touch with, some of you have questions that you may feel uncomfortable asking, and there are some whom I would like to explain my situation to but cannot take telling the story over and over, or I cannot articulate it all correctly. Some of you that I have not seen or spoken to for a while do not realize that anything has changed in my life, and those of you who I do have contact with see me at my best and do not realize that those moments are few and far inbetween.
For instance I have been trying to write this letter for about four weeks, as I have great difficulty starting and stopping projects and articulating my thoughts. I hope this letter comes out clearly since it was written with pages of notes that I can barely understand or read. It was also written with a lot of quotes from other people, and an amazing thing called spell check. My hope in writing this letter is to educate (not everything on the internet is true), explain why I do the things I do (my great fear is that I will hurt people’s feelings, or make them feel that they are unimportant in my life), and to let you know how you can help so that my family and I can live as normally as possible and enjoy our precious time together and with our family and friends.
For those of you whom I have not kept in close contact with: I was diagnosed with Huntington’s Disease (HD) in February of 2013. Prior to that, I battled with symptoms that varied for roughly two years ( and probably more) and was not sure what the cause was. I tried many different avenues and the doctors found nothing, so I finally turned to my last resort.
I decided to get an HD test done, as it is a hereditary disease and runs through my biological family. The test was positive. In some ways, the result was devastating, but in other ways, it was a relief. I finally had an explanation for the symptoms that were slowly worsening, I now appreciate all that I have much more, and it has brought my husband and my children much closer together. We were already a very close family, but testing positive seemed to bring out amazing, (sometimes hidden) graces, and strengths within all of us that we had not been aware of before.
However, it is very disheartening that my mind can hold maybe 25% of the memories that my husband and children have. But we try to find humor in this unfortunate situation as much as we can.
My husband is a master at making me feel “not alone” in my shortcomings. One time, I left my van running outside the gym for about three hours, so the next time we went to the gym together, he also left the van running! I burn myself on accident many times while cooking, and every now and again he will come into the kitchen and tell me he burnt himself. I have burned and completely messed up many recipes, but he always eats what I make, telling me with his mouth full that it tastes perfect.
My 17 year old daughter and I joke quite a bit about the fact that we can now understand each other better now that I have the symptoms that she has just by being a “teenager”, with the selective hearing, goofy sense of humor, and lack of focus and motivation. My 16 year old daughter follows behind me and fixes my mistakes without saying a word, and if I am irritable and “fly off the handle,” she tells me to settle down over and over until I comply. My 9 year old daughter is very protective when there is an excessive amount of noise (as I am very sensitive to it) and she’ll pop up behind me out of nowhere to put her hands over my ears and protect me.
To give a very shortened explanation of the HD test results: When I got my test back, my CAG (copies of a gene) count was 40. At 39 and up, the gene is in “full penetrance”. The gene repeat number does not change over time, and it does not tell you how bad your symptoms will be. It simply tells you when a majority of the symptoms might appear. Generally, the higher the number, the sooner symptoms will show, but everyone is different. For example, if 35 to 45 is the average age of diagnosis, then a repeat of 36 to 45 is usually the gene repeat number for that age group.
Having a disease that, in its early stages, is not always visible on the outside is extremely difficult. Just because you can’t see the changes does not mean they are not real. People with HD tend to be very clever at hiding symptoms so that a lot of people are not aware of the changes. For instance: I try to not wear tennis shoes very often because it is difficult for me to tie them, I only eat certain foods so that I don’t choke as much, I try to listen in on a conversation for awhile so I can hopefully figure out who that person is by what is being said, I change how I hold things so that they are easier to use (like holding bread to spread something on it or squeezing my cell phone very tightly so I don’t drop it), I try to make one dish meals because it can be very overwhelming to cook more than one thing at a time, I may sit on my hands to make the movement look less obvious, and subconsciously, when I am extremely restless and the chorea becomes more obvious, I allow my body to kind of just “go along with it” to make the movements look more purposeful.
I would like everyone to know that just because I have a disease does not mean I’m not still a human being. I have to spend most of my day being very careful of what I do, and if you visit, I may not seem like much fun to be with, but I am still me, stuck inside of a sick body. I still worry about my friends and family, and I am interested in what is going on in their lives. It just does not always look like that on the outside.
That being said, I would like to offer some suggestions that are extremely helpful to me, which in turn are extremely helpful to my husband and children as they are the ones who are there to comfort and help me through horrific panic attacks, among other issues. Anything that I or anyone else can do to lessen the occurrence of these attacks is my main focus. Please understand that being able to socialize, think clearly, understand words that are spoken to me for five minutes does not necessarily mean that I can continue for ten minutes, let alone an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover by some time in complete silence.
We have found that if we stick to one “event” per day (like a trip to the grocery store, a birthday party, visiting a friend, etc.) is much easier on me mentally. If we do not stick to that plan, then the next couple of days are not enjoyable for anyone. My symptoms may vary suddenly, meaning I may need to cancel an invitation at the last minute, and if this happens, please do not take it personally. My symptoms may also change when my doctor switches up my medication for the better of my symptoms. I am very sound sensitive which was very debilitating for a long time, but by using some coping mechanisms suggested by one of my doctors, that sensitivity is still there but extremely lessened. Please understand that if I say I have to leave, take pills, or have quiet NOW, that I do have to do it right now, it cannot be put off for later or for an instant. If it is put off, the reaction in my brain and body will not be very forgiving.
Although HD is a degenerative disease that is incurable, it’s symptoms can be alleviated by different mixtures of drugs. At some points, I will be on a “trial” basis to find out if a certain drug is right for me and I may be better, I may get different side effects, or I may get worse. When taking my prescriptions, they wear off before the next ones kick in. That can mean a wait of 40 minutes or so. I try to schedule things accordingly when I know I will be at my best.
Please do not call me on my home phone, I will not answer it and the ring makes me anxious, texting is best because there is no startling sound, I can refocus on what I was doing after, and I have time to respond and think about how to put together what I am trying to say. I can also understand it better when I am able to reread it. Most of the time when things are spoken to me, I don’t hear it the way you said it, and I have a hard time finding my words, so it is much more difficult to concentrate while speaking to someone.
Just a few more helpful tips: calm environment, avoiding stressors, constant reminders, maintaining familiar routines, breaking tasks into small steps, patience, avoiding asking open-ended questions, and speaking one at a time with one conversation in a room can all make a huge difference in my life. Keep chairs, shoes etc. close to the room walls to keep me from tripping.
But most importantly, I need you to understand me.