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By Matthew Santamaria (msantamaria@hdsa.org)
 

Huntington’s disease (HD) can not only affect the patient but the caregiver as well. Twenty-eight-year-old New Mexico resident Savannah Wilkes has seen HD firsthand.

HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

About ten years ago, her mother tested positive for the gene that causes HD. Savannah spent her teen years taking care of her mom as the symptoms started to progress.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“From the mood swings, random outbursts, severe depression and rage, to forgetting where she was randomly at the grocery store or not knowing how to count change to pay for her items at checkout,” said Savannah. “I dealt with it all and saw my mom slowly become a person that wasn’t her identity anymore, it was the disease. It was a lonely time and I often felt responsible for her wellbeing even though I was still a child myself.”

Her mother’s condition put a lot of stress on her father. He was trying to provide for his family and get the best care possible for her. He was only home two out of the seven days because he worked in another state for years.

“No one believed how bad things were at home, not even my dad because, with HD, it’s like a light switch they can flip on and off in the earlier years,” said Savannah.

Once she graduated high school, Savannah moved out of the house. Her parents were in denial for years about her mother’s condition. For Savannah, the denial made her not want to go home. At nineteen-years-old, she got married and moved away because her husband joined the military.

“I talked to my parents every day on the phone but we barely got to see each other due to the distance,” Savannah explains. “This caused so much stress on me as I felt like I needed to be there more for my mom. She always tried to portray the best attitude despite how she was really feeling.”

As the disease continued to progress, her mother just stayed at home. According to Savannah, she was at peace when she would go outside but her mother did not want anyone to see her symptoms of HD.

“I think this caused a lot of her depression but she was afraid of anyone seeing her “movements” so she secluded herself and shut the world out to hide the disease,” said Savannah. “Regardless of what she went through, she was still the strongest person I’ve ever known.”

Her father then decided to quit his job and be a full time caregiver for her mother. However, it would go downhill from there as her father became stressed with the caregiver role.

“A lot of patients with HD have much more debilitating symptoms by the stage my mom was in, but she was still driving (when she should not have been) and refused any type of medications or treatment to help with her behavior and movements,” said Savannah. “This caused a lot of heartache for the whole family as she was constantly getting injured and having “episodes” of depression and hysteria. My dad also started secluding himself and seemed sad and hopeless every time I spoke with him.”

Then, Thanksgiving came and Savannah was excited to see them. However, it wasn’t what she was hoping for. Savannah had her first child who was just a one-years-old at the time. Her son refused to sit on her lap because he was scared of the movements and wouldn’t go near her. They ended up leaving three days earlier because her mother couldn’t handle being out of her normal environment and was having outbursts the entire time.

“I tried to get them to stay but my dad just wanted to get her home so they left and I remember her telling me it would be the last time I would see her,” Savannah explains. “She said she couldn’t live with the disease anymore because it stole everything from her and that she didn’t want to keep being a burden. I asked my dad if he was feeling suicidal at all and he laughed at me and told me of course not and that everything was fine.”

Less than two months later, her parents took their own lives.

“The whole situation was devastating and to this day is still so overwhelming and confusing,” said Savannah. “We believe that he got so worn down and brainwashed from her delusions that he just decided to give in to what she wanted."

Savannah went through a dark time dealing with the loss of her parents and what her future could be.

“I felt trapped in this bubble of sadness that I just didn’t know how to get out of,” said Savannah. “But I decided to take control of whatever this life had for me and live it to the fullest.”

She found common allies in the HD Community.

“I got very involved in the HD community for support,” said Savannah. “I found friends that became like family to me because they understood what it meant to have family members with Huntington’s or had it themselves. They knew a lot of the same pain as me and it felt good to have that comradery. I used my pain as motivation to get healthy no matter what my test results held and ended up losing forty pounds and getting my life back on track.”

With the support, she decided to get tested for the disease.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

She tested negative and immediately felt numb.

“I should have been ecstatic but mostly I just felt relieved that I didn’t give it to my son,” said Savannah. “I remember going out in the parking lot and hugging my husband and crying with him for the longest time. I felt like I had lost a limb because this had been hanging over my head ever since I was a child and I just assumed I had it.”

She continues:

“At twenty-five-years-old, I was planning for my death and when I was told I didn’t have the disease I didn’t have a clue how to go on from that. Several other family members were not so fortunate so I also felt tremendous survivor’s guilt for them having the disease and I didn’t.”

She thought that she was not allowed to be in the HD Community anymore because she tested negative. Savannah learned quickly that was not the case.

 
Savannah has a message for the HD Community:

“There is going to be very painful moments in life that will alter your entire world in a matter of minutes. These moments WILL change you. Let them make you stronger, wiser, and more kind. Feel the pain and learn from it, grow despite it. The hurt will never go away, but I do believe that you can heal from brokenness.”

“Always remember to take care of yourself. Self-care isn’t selfish and I firmly believe that if my dad had practiced this that he would still be here living his life despite what he was going through. Tomorrow is a fresh start; a new beginning. Reach out if you need to and never be afraid to ask for help. There’s always someone out there who cares so let them. Alert them to be there for you when you can’t show up for yourself.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families. To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org