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

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10 Responses to “Looking Back…Moving Forward: Diagnosed with Hydrocephalus at 44”
  1. Angela Lacey says:

    Also, much love and thanks for all the help my mom and sisters provide weekly.
    What would I do without them???
    Love you guys!
    Angela

  2. Sandra says:

    Thanks for sharing your story. I have recently been diagnosed with hydrocephalus; the radiologist who interpreted my two MRI’s (one with contrast one without) described my hydrocephalus as massive!!
    I am also a 45 year old female and also have one son…we have a lot of similarities. I am seeing a neurosurgeon next month. Can you tell me why they did not offer you treatment and instead chose to only monitor for now?
    My symptoms are quite severe and constant; headaches, vertigo, nausea, lethargy and I can not imagine having to continue with things as they are without some sort of relief.
    Thanks again for your story and I wish you the best.
    Sandra (Ontario Canada)

  3. christine says:

    I’ve been diagnosed iwth NPH Feb. 08, 2013. Not reallizing the seriousness,or impact on my life, this is all just about to play out.

    I am thinking so… I have the shunt surgery, off of 6 – 8 weeks and I’ll go back to work. However, the more I read the less I feel this will be a reality.

    I believe that my NPH is the long term effect from being in an abusive marriage 22 yrs ago. I have so many questions: Will I be able to drive? Will I return to work? should I start my SSI application now? I am completely out of sick time at work, and we don’t even have the full diagnosis from the Neuropsychologist.

    I worked so hard to get into my job, I have been there 5 yrs, and when this came about I was in the beginning stages of writing a grant for a Community based program just for persons with disabilities that do not qualify for social service criteria other than food stamps.

    So will I continue to work after shunt surgery? Should I apply for disability? How can I know what to do when the specialist appointments take so long to get in? Scared to death of my demise, and will I be normal. I am 47 yrs old. and I have too much to do. I try to remain positive as I’ve been thru so much in my life that hey? whats one more hurdle? But the truth is I am not so sure, and I can’t admit this to my family who depend on me for so much. Any insight on the process would be helpful. Thanks

  4. amandagarzon says:

    Christine, I have forwarded your comments on to our Director of Support and Education. But everyone is different and there are many individuals who have been diagnosed at your age who continue to work and do other things in their life before their diagnosis. We’re really glad you’re trying to stay positive and we are always here to help. Don’t hesitate to give us a call. You should also join our Facebook community. It is very active and many people will respond to your questions based on their own experiences. But, again, everyone is different. You are not alone in this journey, however.

  5. christine says:

    Thank you Amanda, Many of my friends have told me I am wasting too much time planning my demise. That I need to get back on track of being my old positive self. They are right. But a tiny part of me can’t help to think it’s easy for them to say…. as they are not the ones going through this. I feel so alone some days and even my own family members have made me feel like I am making more of this than need be. So next question. How accurate are CT scan resluts? And what does the comment remarkable mean? Is it remarkable I am still functioning? Or is it remarkable that my brain lobes are so strong that I shouldn’t have any isses?

  6. sue skinner says:

    Hi I was diagnosed with NPH at the age of 29, struggled on until i was 41 when the falls and the incontinence became to much to cope with. My surgeon wanted to shunt me years ago, but i was so frightened incase it went wrong i had three young children at the time. I finally begged my surgeon to shunt me, i was put on an emergency list and was shunted soon after.. I seriously would will anyone who is scared not to be ive never looked back my life is completely transformed, admittedly my directional skills, memory and figuring things out is hopeless but on the whole my life is so new and each day just gets better.. Please dont be worried your in good hands and life really does begin again :)

  7. Lisa Burns says:

    I was diagnosed at 52 with NPH after some strange symptoms which affected my hearing of all things. I had the headaches that Angela describes, but no motor symptoms. I had the headaches for years and thought they were migraines. The hearing symptoms were decreased volume and a loss of pitch perception – since I am a musician, this was crippling. I had shunt surgery in August of 2010. I still wear hearing aids but the pitch symptoms are gone. Thank God! I am symptom free at this point. Thank you Angela, it is great to hear from other NPH sufferers.

  8. Hilary says:

    I was diagnosed with NPH at age 51 after years of symptoms and misdiagnosis. I didn’t wait too long to get shunted after I was diagnosed. I belong to a Yahoo support group, NPH Friends, which is a great resource. I did have to retire from my job, as I have a lot of lingering cognitive problems, despite working hard on my brain.

    Lisa, it is funny what you say about losing your sense of pitch, as this is something that came back to me as well. I lost my voice and the ability to carry a tune before I was shunted, and while I was having trouble with shunt adjustments. In addition, I used to play flute quite well through college, and then life got in the way. I picked it back up several months ago, and it only took a little while to get my skills back. Making music is so therapeutic!

    As for going back to work, everyone is different, Christine. I know people who were able to return to work after being treated for NPH. For me, I am still able to drive. You may have a few weeks right after surgery where you aren’t permitted to drive because of general anesthesia, but if you are driving now, you should be able to drive.

    NPH and other forms of adult hydrocephalus are getting much more attention now than when I was trying to get a diagnosis. Great job, HA!

  9. Kelly Lojen says:

    Thanks for sharing your story Angela, and thanks to all leaving their comments. Its so comforting to hear there are many of us Diagnosed in middle age. I was diagnosed at 40 ( 2 years ago ) As I was feeling off balance and getting headaches, both are foreign to me. After many tests I demanded a CT scan and they found my Hydro. My neuro team believe I have had it for a long time. So far no Ops just wait and see. Doing well living a normal life. I notice I feel it when I’m run down and not looking after myself. I totally freaked when first diagnosed but was told they don’t think a shunt or ETV will help. Once again thank you all for sharing, I don’t feel alone in this journey.

  10. Eileen Layman says:

    It’s been 1 month since they put a shunt in. I’m feeling pretty good but I am still off balance and it makes me worried that I will fall again!
    Will the off balance part just. Be a part of my life and will always need a cane?

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