Living With NPH Part 2: Tips for Living With NPH

May 30, 2023

Written By Frank Salamone, L.C.S.W.

Frank Salamone, L.C.S.W., is living with normal pressure hydrocephalus (NPH) and is grateful for the help and encouragement he has received from the hydrocephalus community. “I feel confident that, with the support of my family, friends, medical team, and my fellow NPH’ers, also known as, “hydro warriors” in my support groups — whom I am so blessed to know and learn from — that I will be okay”, said Frank. To assist others in their journey, Frank has compiled a list of 18 tips to help individuals living with NPH.

Frank’s Tips for Living With NPH

Join as many support groups as you can find. I am a member of the Hydrocephalus Association’s (HA) Community Networks that meet virtually on Zoom and two private groups on Facebook for normal pressure (NPH). HA’s NPH Virtual Meetup is held on the 3^rd Wednesday of every month. You can join our next NPH meeting on Zoom by registering, here. You can join HA’s NPH Community Network by clicking here. These groups gave me hope when I felt hopeless and the courage to advocate for myself in the healthcare system. I also value the ability to provide support to others. Receive and give back. The definition of “support.”

Be your own advocate. Become educated about the condition. Do your research. Inform yourself by reading everything you can find about NPH, the treatment options, and ongoing management. Watch HA’s webinar recordings and NPH videos, and Ask the Expert Video Series on NPH to learn as much as possible.

Be knowledgeable about the make and model of your shunt system and valve. And if your valve is programmable, the settings of the valve. Download HA’s mobile app, HydroAssist® to store your medical history. Store your CT and MRI images, record changes to each individual treatment, track your symptoms, store personal and medical emergency contacts, and so much more.

Find a neurosurgeon who is well-informed and that treats NPH. Most doctors are open to second opinions. You can find a list of neurosurgeons, neurologists, and neuropsychologists in your area by searching HA’s Physicians’ Directory.

A shunt allows individuals to lead full lives, but like any other long-term medically implanted device, it can fail. Learn the symptoms of shunt failure. I am on my second shunt revision, but in the world of NPH, I am a “newbie.” Many of my group members have had more shunt revisions and surgeries. Their courage inspires me every day.

You may encounter a doctor who is dismissive of your descriptions of your NPH symptoms. Remember, no one knows your body better than you. Trust your instincts and be prepared to share feedback. This is why HydroAssist® is extremely useful because you can track your symptoms, export your symptom diary and send them to your doctor. I complained about the return of symptoms for almost a year before I finally had a new neurosurgeon take my suspicions seriously. I learned from him that for some people their CT scan and MRI do not always show whether or not you are in shunt failure. Some doctors may send you for a shunt flow study, which also may be referred to as a shunt patency study or shuntogram. Shunt flow studies can determine in real-time if cerebral spinal fluid (CSF) is flowing through the shunt system. By injecting a small volume of contrast dye or a radiotracer into the shunt reservoir, the flow of CSF through the catheters and valve can be measured. Reflecting, I believe that the neurosurgeon ordered the test to “humor me” and was surprised when the images confirmed that none of the tubings showed any evidence of CSF flowing to my abdomen. I went into surgery within the month.

Give yourself “grace” for not being able to manage some of the challenges you will face daily. Yes, you may lose your balance. Yes, you may misplace things. Yes, you may repeat yourself sometimes. Yes, you may experience apathy about activities that you used to enjoy. Yes, you may wet your pants. Your dirty dishes and laundry may pile up. Just remember this. You are not a failure. You are not lazy. You have NPH. As one of my heroes, Stephen Hawking wrote: “… concentrate on things your disability doesn’t prevent you from doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.”

If you have Medicare and struggle with “activities of daily living” (ADLs) or balance and gait problems, consider requesting Medicare Home Health Services. I had difficulty with dishes, mail, laundry, and personal hygiene. I was feeling overwhelmed and frightened. Did it mean that I could no longer live independently? I started working with an occupational therapist (O.T.) to learn tools to manage my ADLs. Once approved, you will also be eligible to work with a nurse, a social worker, and a physical therapist, all from your home. Yes, technically, you must be a “homebound” senior. But giving up driving for that period is a tradeoff that I can live with (Some agencies may allow you short drives for medical appointments and grocery shopping, but some agencies will not allow you to drive). I am 74 and live alone, so that may have helped me qualify.

Meditate, eat healthy food, walk, and enjoy your hobbies. Stay connected to friends and family and educate them about your condition. Do volunteer work if you are able (I volunteer in the Neonatal Intensive Care Unit [NICU] at my local hospital as a “baby cuddler.”)

Break down projects into smaller increments, even if it is “I will wash one dish” or “I will clean the bathroom sink.” Celebrate the small victories. Say it out loud: “Yay, me!”

Place as many of your bills on auto-pay as possible. Do whatever you can to simplify your life. Keep your “to-do lists” manageable and flexible (“Does this need to be done today, or can it wait until tomorrow?”). I use a digital calendar, post-its, and a dry-erase whiteboard to help me stay organized.

Maintain your sense of humor, especially about yourself and your imperfections. Read comics, watch stand-up comedy, and laugh aloud a few times daily.

Ask for help when you need it. This has been the most challenging concept on this list for me. I have always been “the helper.” But, if you are not getting the help you need, you may have to “play the brain surgery card.” It’s a last resort, but it works every time.

Share your story or write a blog piece for HA’s website about your experience living with NPH. Your insights will mean the world to their readers, many new to our NPH experience. They are often confused and frightened. You can make a difference. I wrote a piece for them with my advice for preparing for shunt surgery. To read other NPH stories, click here.

Participate in your local HA WALK to End Hydrocephalus. Although it meant challenging myself to drive much further than I had in 3 years, I participated in a WALK in 2022. My next local WALK is in Orange County on Saturday, October 21, 2023, in Huntington Beach, CA. Check HA’s website for WALKs in your area.

Make a donation to HA. They are working so hard on our behalf. Read their website; there is so much valuable information there.

Learn to differentiate between your actual limitations and your fears. Sometimes, you will still fail, but sometimes you will succeed! Recently, I have pushed myself beyond my fears and self-limiting beliefs on occasion. I succeeded a few times. And I failed a few times. But I feel it is necessary to challenge myself – within reason — when I am able. It has been encouraging and self-affirming when I “feel the fear, and try it anyway,” irrespective of success or failure. But I practice “mindfulness,” and sometimes a little protective voice in my head says “Enough, Frank. Time to stop for now. Tomorrow is another day.”

Finally, practice acceptance. My occupational therapist said: “You have to realize that the ‘old Frank’ is gone. This is a new normal.” I have a framed card that hangs on my wall. It simply reads: JUST KEEP GOING.