Tag Archives: death

Losing my mom to HD

Sunday night, my mother died and her earthly existence ended. But I had lost her to HD years and years ago. She and everyone close to her were victims of her primary symptom: the ever-renewing anger loop. Only during the past couple of years did she take any medicine for HD. She refused until, somehow, doctors convinced her that she would feel better if she took medicine to slow her chorea and when she started taking that medicine, a lot of the anger went away.

Her anger, that is. I have spent years in therapy dealing with the hell that she put me through before I knew she had HD and started realizing that the problem wasn’t me. I have spent those same years trying to forgive her for hurting my family and other people I love because her behavior was caused by a disease.

Our disease.

Now, just my disease.

I have Facebook friends who have lost their moms to HD and they love and miss those moms. I wish that my mom was like theirs. I feel that way about my dad, who died of kidney disease, and was never abusive. I grieved when he died and I have an empty spot that he used to fill that I carry around now.

But with my mom, all I feel is relief. Disbelief that her dynasty of terror has ended. Part of me never expected it to happen. There is no longer a microcosm swirling around her demands or reacting to her use of the most hateful words she could spit out.

For her memorial service, we are putting together a presentation of the good in her, before the disease changed her. We have to go far back. I hope that being reminded that she was a healthy, kind person once, a person who did nice things, will help me in the forgiveness department.

Even more, I want to be happy for her. Happy that she is free from the disease. Happy that she is no longer out of control. Happy that she is at peace.

But someone asked me how I was feeling yesterday and before I could think of what I was supposed to say, I replied, “Fuller.”

And for now it’s true.


Help the Rodino family: whole family is HD +

I don’t know these folks, but I’d like to try to help them stay together and be able to take care of each other.

If you would share their go fund me site on your social media, and donate if you can, I am sure that would help. Sharing it is the most important thing, though, because it will expose their situation to as many people as possible. So if you can’t donate, know that by spreading the word, you can help this family.

Their story:


To help:


Information from the Go Fund Me site:

Rachel M. Rodino (3/21/02 – 4/7/10)

Rachel and her adoring big sister Gianna.  They were 2 peas in a pod and spent countless hours cuddling and loving one another.  Rachel was a precious little girl.  It was absolutely heartbreaking when at the age of 5, she started having unexplained seizures.  Nine months after her first seizure, Rachel was diagnosed with the Juvenile form of Huntington’s Disease (HD).  Sadly, 18 months after that, Rachel died from complications of HD.  This was obviously devastating for the family in so many ways, but little did they know that this was only the beginning of their trials and tribulations with this debilitating disease.

Rick Rodino  

He was the second family member diagnosed in 2008 with Huntington’s Disease at the age of 53.  Unbeknownst to the family, Rick had been suffering with HD symptoms for almost 10 years prior.  It wasn’t until Rachel’s diagnosis that the family learned that this hereditary neurological degenerative disease was in their family.  Rick worked for Millionair at The Albany International Airport  when he was first diagnosed.  He was immediately put on disability and now only receives Social Security Disability.  Rick currently lives in his home in Guilderland and is currently in the latter stages of HD.

Anthony Rodino

Rick and Lori’s son and Rachel’s older brother, Anthony was the third family member diagnosed with HD at the age of 19 in 2011 just 1 year after Rachel died.

Gianna Rodino

Rick and Lori’s eldest daughter and Rachel’s older sister, Gianna, was the 4th member of the family to be diagnosed with HD in 2011 at the age of 17.

Lori (Bernard) Rodino

The caregiver who never complains (honestly never) but her family and friends know that she worries terribly about how she will continue to care for her family 24 hours a day and still keep the house, pay the bills, put food on their table, and put gas in their car.  For many years, it has been a struggle to make ends meet while she leads her family through the misfortunes of this terminally debilitating disease – Huntington’s Disease.

Donations, we can keep this family in their home. This is vital as it plays a significant role in maintaining the mental stability of each family member.  Reducing the financial stress of a mortgage payment would allow the family to enjoy life and focus on living.

It’s important to know that this is the Rodino’s first home.  They moved here in 2005 after losing their past residence to a fire.   Many memories have been made here and it would be an absolute gift to enable them to continue to make more here.

Please help the Rodino Family by starting a Chain of Love and by donating whatever you have been blessed with to spare.