Tag: HD

The Importance of Positivity

The Importance of Positivity

Staying positive while watching someone you love go through Huntington’s disease is definitely a challenge for all of us. It is much easier to focus on the bad parts and dwell on the sadness. But it is crucial for families going through this awful disease together to find some happiness amid all of the sadness. 

For my family, we enjoy the time we have together. We do a lot of activities together and take a lot of pictures. We tell stories about days passed and reminisce. My mom decided she wants to visit all of the National Parks, so we are working towards getting her to all of them, and my parents travel to new places together as frequently as they can. As I have said in another post, we try to laugh about things as much as possible because it makes everything easier to cope with. 

For myself, writing this blog helps me to deal with everything. I am able to talk about my mother in a positive light while sharing facts and information about this disease. It is cathartic for me, and even if no one reads it I will keep writing. Sometimes I focus too much on what has been lost to HD, so this is good for me to do. Talking about it helps a lot, because then I am not experiencing this all alone or just with my dad. It can be hard sometimes, but we enjoy our times with each other. 

Huntington’s disease is certainly no picnic, but if you focus on everything that has been lost, you will miss all of the time that is in front of you right now. HD can’t stop you from living your life to the fullest while you are able to. 

Thoughts about a possible future with HD

Thoughts about a possible future with HD

As a person who is at risk of having HD, I have a relatively unique point of view. Knowing now for certain that my mother has the disease is both frightening and very sad. Knowing that I have a 50/50 shot at having the disease is not comforting. But the thought that really keeps me up at night is wondering if I have now passed this on to my innocent children. I don’t worry a lot about myself. Whatever happens to me happens; there is not much I can do about that. The thought that I have cursed my children not only to watch me suffer but also suffer themselves is almost unbearable. It is a situation that I’m not sure a lot of people understand. 

I am certain that I will not be able to rest until I know for sure if I have HD, but answers are also terrifying. If I have it, I might not live to be 60. I may never see my sons get married. I might not ever have grandchildren, or if I do I may never see them. They might have this too and then I have not just cursed my children, but my children’s children as well. So many things go through your mind when the bright, long future you envisioned is put at risk. But then, my time could be up tomorrow or twenty years from now. Whenever my number gets called, it gets called. 

My mindset about HD is different than my siblings or my father’s; they could have to watch me suffer through this, but they don’t have the added agony of wondering about the future generations too. This is why those who are at risk and caretakers need so much support, because the weight of the whole world feels like it’s on their shoulders. This is why more people need to be made aware of this disease and its effects, so that those who are suffering in silence right now can stand up and be met with kindness and support and empathy. That is what is needed. An understanding or at least empathetic shoulder to lean on when the weight of the world gets to be too much. My hope is that new research will at least make it more bearable for those who have HD, and that one day we will find a cure. That is the future I hope for: a world without Huntington’s Disease. 

Serious but silly 

Serious but silly 

While Huntington’s can be a very serious and depressing topic, there can still be some amusing aspects to it. This is NOT true for every family or every person who has HD, but I am the type of person who likes to find the bright side of things. Sometimes, to me, HD provides comedy gold. Let me just put this disclaimer out there: I am not by any means trying to make fun of or belittle anyone with Huntington’s disease. It is a serious topic and I take it seriously. Ok, with that out of the way, here is why I feel HD can be funny from time to time.

Some of the falls and accidents are so spectacular, that without HD they honestly would not be possible. Before you get mad and say “that’s not nice!” Let me provide an example. Once, my mother was going down the stairs carrying her dinner plate and a cup, and she slipped and fell down the stairs. The amazing part, was that even though she fell down three or four stairs, she managed not to drop her plate or water and didn’t even spill a drop! She was bruised but ok, so all we could really do was laugh. The number of times she has set the car alarm off is pretty high. I have started shouting “we found the car!” Every time she does it; I’m pretty sure people think we are crazy. Another time, my uncle was using the public bathroom. He had a movement while he was in the bathroom stall and ended up in the hospital. His movement caused him to nearly break his nose and get a black eye within the small confines of the stall. He literally got in a fight with a public toilet and lost.

The kind of scenarios that occur with HD are by no means beautiful or graceful. They can, in fact, be really horrifying and frightening to watch; it is one of the many reasons people with HD are secretive about it. I have found, however, that laughter makes people more comfortable and happier. It is certainly not true of all people with HD and laughter would mortifying and anger most. But in these kinds of situations, you can either laugh or cry. I have cried enough for this disease, so I am choosing to laugh. It makes the burdens easier to bear and makes the time we have together filled with laughter and not tears. 

HD Awareness Month events!

HD Awareness Month events!

Today, we are going to talk about some fun events that are going on this month in support of Huntington’s disease. 

First, if you some time available, do a Walk for Hope. There are lots of them all over the country, and they are a fun event that is easy to do. It is not a long walk, usually less than a mile, so don’t expect to be running a marathon, but it is good to be there in support of all the local families who have this disease. Even if you don’t have much free time, the walk is very fast. You can easily do the whole thing in an hour. There is also usually free food and t shirts and beads, so if you like free stuff, check it out! I am doing my Walk for Hope in Virginia Beach on September 27th, so if you miss your local walk, come join mine! I am planning on having a barbecue after. 

Second, for those in the Annapolis area of Maryland, Ledos Pizza is doing an event on Monday, May 18th from 5pm-closing. If you go to Ledos in Millersville off Veteran’s highway, tell them you are there for the HD event or in support of HD, and a percentage of your meal will be donated to HDSA. Let’s see how many people we can get there! Tell all your friends!