Hi, I’m Trish Bogucki from Mahwah, NJ. I am a retired systems director, married to a wonderful man named Vince. In my 45-year systems career, I was a classic workaholic and never made time for regular doctor visits. I knew something was wrong with my walking when I got to my mid-60s but attributed it to some very obvious foot problems. Then I started falling and after a spectacular fall at Step class, I finally sought medical help for my walking problem.
When I saw my GP, he tested me for various neurological problems and I “passed” the test for normal pressure hydrocephalus (NPH) with flying colors. An MRI confirmed his diagnosis and I was referred to a local neurologist and then a neurosurgeon. So, after delaying for years, I was actually diagnosed very quickly! To say I was terrified of shunt surgery is an understatement but it turned out to be much less awful than I feared. The best part was there was almost no pain. Once the surgery was behind me, I started the real work of recovery: I have had several very long rounds of outpatient physical therapy to get my walking and balance back plus cognitive therapy for my memory and attention.
I was determined to get back to the Step class I loved even though by the time I got my shunt I could not walk unaided. My PT place had a special treadmill that my neurosurgeon recommended – the AlterG. Thanks to that wonderful machine and a whole lot of work, I eventually got my walking back. I even made a triumphant return to my Step Class and got through the whole class successfully – my sweet classmates gave me a standing ovation! One of those classmates took this photo of me on the Step:
One unfortunate consequence of all the time I spent on therapy was that I eventually was laid off from my job of 35 years since I could not put in the 50+ hours a week they wanted (I was 68 at the time so this was not a tragedy except to me). But this cloud definitely had a silver lining since it helped open my eyes to the joys of retirement. One of the best things I did was to get interested in the Hydrocephalus Association and ask if I could help in some way. Could I! I knew little about Facebook but soon found myself as one of the admins of the HA NPH Community Network hosted on Facebook.
I also wrote some blog articles about my NPH experiences and learned that cognitive therapy which I had gotten so much out of was not well known or understood. My terrific cognitive therapist partnered with me on an interview which we published on the HA website. We also took our act on the road and did some talks about NPH at local senior centers. Reaction to our talks and the blog pieces was very positive, so we hope to do more along those lines after the Covid crisis has passed. I also took up line dancing and became a daily gym-goer – both of which helped improve my balance and well-being. I can walk just fine now and enjoy Step and Zumba classes – what a difference the shunt and all the therapy that followed have made! Putting a lot of time into physical therapy the first year plus going back to therapy when my balance declined have been critical elements in my recovery. I now think of therapy whenever a new problem crops up and my GP has been of a similar mind.
Figuring out my new normal has been challenging occasionally. Before NPH I was a comfortable swimmer – very relaxed in the water and I could do the breaststroke forever. That completely changed with NPH – just as I had lost the ability to walk, I suddenly could not swim at all. Fortunately, I discovered this issue in the safety of a friend’s backyard pool. I have worked on getting my swimming back each of the last five summers since shunt surgery and I have made progress, but my swimming still needs more work. I have found many other NPH patients with the same problem and some of them had to learn the hard way that they could no longer swim, and it seems that very few doctors are aware of this problem!
On a more positive note, I have learned from my balance therapist and personal trainer that exercises that seem scary or even impossible at first can be mastered with a little repetition and effort and the comfort of a strong trainer nearby. I was leery of the back extension machine the first two times I tried it, but my trainer gave me tips that made it safe and doable. Now I love that machine! The same is true of the pull-up machine – getting on and off it was a bit scary at first but now I do it with no problems. I have learned – albeit slowly – not to be limited by my condition and fears. Just this year I finally decided to focus on walking farther than the distance from my car to the gym. My husband and I started walking around our block which is 2/3 mile. At first, this was a big challenge for me, but now we have logged over 300 miles and met some nice neighbors in the process and even raised little money for HA.
Working with HA has also been a tremendous blessing for me – I have met wonderful people there and have been proud to play a small part by giving my time as a Peer Support Volunteer and Community Network leader. If sharing my story has helped to reduce fear in another NPH patient or their caregiver then I consider my time very well spent!
Additional Blogs by Trish Bogucki: