Looking Back…Moving Forward: Diagnosed with Hydrocephalus at 44
Our history as an association is a reflection of the richness and diversity of the engaged and committed members of our community. That is all of YOU…all of US! As we continue our interview series commemorating our 30th anniversary, we take a moment to hear reflections from individuals around the country who have interacted with the Hydrocephalus Association (HA) and supported HA throughout the years. This week we chat with Angela Lacey. Angela was 44 years old when she began having acute headaches, intermittent incontinence, and kept falling at work. This prompted her to see her primary care physician and convince him to order an MRI. She knew in her gut something was not right. She was diagnosed with normal pressure hydrocephalus (NPH) but is currently not treated, only monitored. She is now 45, is a mom to her son Ryan, and continues to bring her humor and positive attitude to living life with hydrocephalus.
HA: How did you find HA?
ANGELA: I did not know I had hydro (as I call it) when I first began to show symptoms. I was taking a medication for bladder control issues and a medication for depression, treating issues individually without understanding there was a bigger picture that I could not see. Somehow these meds caused a profound balance issue in me. It would come on unexpectedly, though. I found myself at the grocery store pushing a cart full of groceries when my balance went bad. This, to me, felt like someone had tilted the ground under my feet. When I felt this before, it would sometimes cause me to start walking backwards quickly, and I would fall. But this time, the ground shifted so that I was leaning forward on the grocery cart. I had no choice but to run down the aisle at full speed with the cart. It had to look hysterically funny to on-lookers, as if I were responding to some silent alarm and needed to vacate the store immediately. [Laughing] I have since stopped those meds and, although I now have to deal with the bladder issues on my own, it is so much better to be able to walk with a cane or walker and not be put into a run. But clearly I knew something was not right. I just didn’t know what was happening.
Once I had my diagnosis, I looked up “hydrocephalus” online to find out more about it. That led me to a link for the Hydrocephalus Association website. I “liked” HA on Facebook, and then followed the page from there to see how others dealt with living their life with hydrocephalus.
HA: Do you feel HA has made an impact on your life?
ANGELA: Yes, in as much as it has helped me to know that I am not alone in this fight against hydrocephalus. I met Amanda Garzon from HA when she responded to one of my comments on a blog on the website. She has been in contact with me ever since. I also try to keep in contact with HA through Facebook and my connections there. I have made some Facebook friends who have children or whom themselves have hydro. Sometimes we exchange stories.
When I was only dealing with hydro, I would have good days and could do a lot more about blogging and reaching out. Now, however, I have an additional illness to deal with, and that complicates things. Still, I subscribe to my grandmother’s life philosophy, which is: “If I can open my mouth to complain then I must be alive. Therefore, what do I have to complain about?” She never believed in griping or in throwing your hands up and giving up. She believed in fighting, living, going on with life to the best of your ability. That is what I try to do every day. I try to find the humor with things in my life, even when they are stressful or NOT funny.
HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?
ANGELA: Speaking to law makers and politicians, making public this illness that so few people recognize by name.
HA: What else would you like to see HA do?
ANGELA: Try to reach out to someone famous who may have had their life touched by hydrocephalus in some way. Use their story and presence on a commercial to truly reach more people with something/someone they can relate to.
HA: Where would you like to see HA 5 years from now?
ANGELA: As a real “go to” source for making all forms of hydrocephalus known and educating the public that there is not only one way to get hydrocephalus and that it does not only affect one age group.
HA: What message do you have for individuals living with hydrocephalus?
ANGELA: Be strong, keep on keeping on, and focus on what you CAN do, not what you can no longer do. Don’t let this beat you down. On the outside, I appear to be a healthy, middle-aged lady, so people assume I am just lazy when they see me walking with a cane or using an electric grocery cart. So, I fight against the ignorance of family, friends, and strangers on the street who think they know why I walk with a cane, and get incensed and treat me poorly when I don’t appear sick or old enough to be getting help at the gas station, for example. On the plus side, I have learned what is important in life and what doesn’t really matter. You learn to be grateful and thankful for everything and every day. Some strangers will step up and ask if you would like help, and I have learned that it is also okay to ask for help when you need it. Keep on keeping on!
HA: What message do you have for the general public about living with hydrocephalus?
ANGELA: That I am dealing with my daily life the best I possibly can. It may take me longer or I may be slower or require wheels to do some things like shopping, but on the inside I am just the same as I was before. I want to be treated normally. Even though I am relatively young, that does not mean that I am not in need of certain aids and considerations…and, most of all, people’s patience.
HA: If you could have one wish around hydrocephalus, what would it be?
ANGELA: If I could have one wish, it would be that a cure be found, of course, and for improvements in shunt technology to continue. But I know HA is always working on these issues, so my wish right now that would significantly help me would be that the treatment, surgery, follow up doctor’s appointments, and, when surgery isn’t a possibility, the cost of incontinence products and other aids be covered by insurance. This is especially important when the person with hydrocephalus has lost their job and their ability to pay COBRA for insurance. It should not take a year to get Social Security benefits going. We need better support for individuals living with chronic health conditions.
“You accept what you cannot change, adapt, and keep hopeful for a cure or treatment in time that will work for you.” – Angela