Tag: causes

Huntington’s Disease Awareness Month

Huntington’s Disease Awareness Month

In light of May being Huntington’s Disease Awareness Month, I wanted to revive my blog and give an update on where things stand for me right now, as well as highlight some events that will be taking place in the near future. 

Since we last chatted, I have been traveling a lot. My children and I have been here and there and everywhere, sharing life experiences and enjoying everything as thoroughly as is possible with an almost one year old and almost two year old. Were there problems? Of course there were. But we made it through them (with a lot of help from friends and family), and we have grown so much together that all the trials and tribulations were worth it. I have put off getting tested. I am still unsure whether it would be better to know or not. I have been trying to become more involved with HDSA, but our schedules are never compatible; whenever they have a meeting or event, it is invariably on the days that I am not in town. When I am not working on projects like this one for HD awareness, I have been volunteering at a humane society and making sure my kids know they are loved. They are only so little for so long, and they grow up entirely too quickly. While being a mommy sometimes makes me want to pull my hair out (and will most assuredly give me gray hair), it is honestly one of the best things I have ever done with my life and I could not be more grateful for it.  

Image courtesy of Brian Gordon at Fowllanguagecomics.com

We also recently were very fortunate to buy our first home, which has been wonderful for our family. I know our children love the space to run around, and I am thrilled that we no longer live on the top floor of a 3 story walk up. I will not miss those stairs!

My mom was fortunate enough to be a part of a test group for a new medication for HD. While I think during the trial she was on a placebo, since the end of the trial she has been able to take the actual medication which, in my opinion, has helped her tremendously. She has a very good memory now; her memory is actually better than mine in most cases, and she is more focused. It would appear that this medication doesn’t affect movements, so those are still there, but overall this has seemed to be a very positive experience for her. I am proud of her for being a part of the test group because I know it wasn’t easy for her. I admire her commitment and perseverance, and that is something I will never forget.

This year has also had a loss that greatly impacted me. They say that you never know how much someone means to you until you lose them, and in the case of Mary Nusser, that was most certainly true. I took her so much for granted that I actually couldn’t imagine a world without her. While we weren’t the best of friends, I did know her for my entire life and counted her as part of my family. With every project I started or dream I dreamed, Mary was always among the first to tell me that I could do it and support me. Even with this blog, she was one of the first to read it, was one of 3 that subscribed, and was at our last pizza night fundraiser. She was the kind of person who wholeheartedly believed that one person could change the world, and she lived every day in that way. She did so much to help others and affected so many people, that her loss was felt by her entire community, her family, and most certainly by all those who were lucky enough to call her a friend. 

So this year has had its ups and downs. 

Some exciting HD events and fundraisers are happening very soon! Of course, since May is HD awareness month, most of the Walk for Hope events are this month across the country. There are a few exceptions: Maryland is having their walk on June 16th; New Jersey has a walk on October 1st and October 22nd; and Virginia will have their walk on September 25th. Be sure to sign up for a walk in your area! Additionally, the HD conference this year is in Baltimore, MD on June 2nd-4th. A lot of great information about new treatments and medications will be presented and the conference is a great way to meet others who are affected by Huntingtons Disease. More events can be found by clicking the link to the HDSA website here. 
Event information courtesy of hdsa.org/donordrive

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. 

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!