NPH and Caregivers

A normal pressure hydrocephalus (NPH) diagnosis is complex and frustrating. Normal pressure hydrocephalus symptoms like gait disturbance, mild dementia and incontinence also occur with other conditions that affect people over 60 years of age often making diagnosis confusing. These conditions can also coexist with hydrocephalus, further complicating diagnosis and making treatment difficult.

For those living with NPH and their caregivers, staying informed about the condition is essential to managing care. The challenges of living with a chronic illness or caring for a chronically ill parent or spouse are stressful for all involved. Adults with hydrocephalus may resent their dependence on a spouse, child or other family member. Acknowledging emotional responses to this chronic and potentially disabling condition can help all those involved.

Helpful Resources

The Hydrocephalus Association provides essential tools and resources that enable you to have more control of your life. We provide the following documentation and can help connect you with resources for questions or issues you may encounter.

 


Knowledge

Learn more about normal pressure hydrocephalus, treatment options, and ongoing management.


Physicians Directories

Connect with the right healthcare professional to ensure excellent care for all of your clinical needs. We offer Physician Directories as a resource for both families and clinicians.


Hydrocephalus Resource Library (HRL)

Find educational articles about a variety of topics related to hydrocephalus.


Trending Topics

What are the topics we are receiving the most inquiries on right now? Through blogs, articles and videos, we provide you with information from medical professionals and Hydrocephalus Association support staff on the topics that are important to you.


Webinars

Be informed and current about hydrocephalus by tuning into interactive, free webinars on a variety of topics.


Community Networks

Connect with people who are living with normal pressure hydrocephalus, their caregivers and loved ones. Visit these portals:


Other Hydrocephalus Resources

Reach out to other organizations and hospitals for valuable information and support for individuals living with chronic medical conditions.


11 Comments for : NPH and Caregivers
    • Danielle
    • August 1, 2017
    Reply

    Hi my name is Danielle. My grandfather was diagnosed with NPH about 5 or 6 years ago. He unfortunately died of complications of the VP shunt surgery. I was doing research on it awhile aback where i read an article where it could’ve been caused from the radiation he received from his breast cancer. I know i might be wrong but any information regarding radiation and NPH would be greatly appreciated. My grandmother is having issues fighting the VA for herself on his behalf. She is on her last appeal and i did have that website i unfortunately lost it due to a virus. Please link any sites that might indicate this. I know it is still unknown on all levels but any help would be greatly appreciated.

    • Judy Miller
    • May 23, 2017
    Reply

    I am a 71 year old woman who has had a lumbar puncture as part of a diagnosis for NPH. After the procedure my gait was better and the neurosurgeon said the next step would be a shunt operation. I don’t feel there has been enough research on outcomes to warrant leaping into major surgery with possible complications. Your husband’s situation is one of the experiences I fear. How is he doing?

      • Amber Rowen
      • June 15, 2017
      Reply

      Unfortunately, Shunt failure is a possibility. However, the insertion of a Shunt to treat Hydrocephalus – remains the only available treatment.
      If your MD says you need a Shunt, than you probably do.
      I’ve had Hydrocephalus sinceI

      • Amber Rowen
      • June 15, 2017
      Reply

      I’ve had Hydrocephalus since
      I was 3 days ago. I have high pressure Hydrocephalus, not
      NPH. But I’ve had 69 Shunt surgeries, I’m 41 years old.
      Feel free to write back with any questions or concerns. Even if you just need an ear. Please be patient, I will write back to you. Let me know if it’s more urgent, I’ll try to respond quickly.

        • Marilyn Crumbliss
        • August 24, 2017
        Reply

        Hi Amber,
        my name is Marilyn, I was diagnosed with nph and had a shut put in 1 year ago today. My gait and everything improved, but since surgery I have horrible pressure in my head and vision is really blurry. My NS has done a lot of adjustments but it does not help. He said he does not know what to do with me. They give me Percocet for head, which sometimes helps and sometimes not. But now I am showing signs of liver damage from the meds. Have you any advice.

      • Jim
      • October 21, 2017
      Reply

      The shunt operation on April 13, 2017 improved my 73 year old wife’s condition, but she refuses to work at improvement, so she has made little, but some, progress in the nearly ten months since. I am not trying to offend anyone, but to me, the shunt is a pathway to strong improvement and my wife is not taking that path. She has never been sick with anything, not even a lousy cold, so she doesn’t know what to do with this. The surgery was the end-all as far as she is concerned, but I don’t think it works that way. You will get out of it what you put into it. You must walk, you must do yoga, or stretching exercises, and you must tone your muscles. Especially your core muscles (Lower back, obliques, abdominals) and your hamstring and quadriceps upper leg muscles. You must do mental gymnastics with simple math and crossword puzzles. If you’re going to watch television watch Wheel of Fortune and Jeopardy, and watch local news so you can visualize what and where they are reporting on. Everything I listed has been what I have envisioned what I would want someone to help me accomplish if I were in her shoes. Both her surgeon and neurologist have endorsed this plan for my wife and she accepts it in their office, but it is a nose bleed once we get home. I helped her get off of her walker in a month and now she walks well enough that she forgets her cane at least 50% of the time, but it took me two months to get her on the treadmill. She started at 6 minutes a day in June and is now up to 12-minutes a day, which is virtually no progress, but she added 12- minutes of stretching exercises on her own). She should be on the treadmill at least at 30 minutes a day–I feel in two 15 minute sessions would be best–and she has committed to get there before Thanksgiving. I also got her started at the gym nearly a month ago. Three days a week we go there and she exercises all major muscles with either only machine resistance, or with 5 lbs. or 10lbs. We see her surgeon on 10/24/2017 to discuss and probably adjust the shunt to greater drain. He wanted to wait until at least eight-months to do so, to avoid whipsawing the setting and I concurred with his reasoning. BTW, her short term memory is terrible, so we started on memory pills at half-strength six-weeks ago and just went to full strength last week. I am praying that her memory improves.

        • Samantha
        • November 1, 2017
        Reply

        Hi
        If you would feel ok speaking on the phone with me, I have some ideas. I think we can get her back on track. You need to know how violating this process is. A lot of people struggle emotionally for a bit. You sound delightful making suggestions, raising the bar, but for some people they are not processing like that so you need to learn how to get on her level if you hope to get her on yours. Here’s my email let me know if your interested. iamsamantha28@gmail.com

      • Diane
      • November 8, 2017
      Reply

      Hi Judy
      I was diagnosed with NPH after my high volume spinal tap showed immediate improvement in my symptoms. I had a VP programmable shunt placed with no problem. I went into the hospital in a wheelchair and walked the hallways within hours of the surgery.
      That was Feb 2017, and I’m still fine.
      I would think that a doctor who would do radiation would check the medical records.
      Amber’s story is upsetting.

    • Mary Jo Balistreri
    • February 12, 2017
    Reply

    I need to speak with someone about my husband’s shunt failure–we are waiting 6 weeks to a new shunt–but is it the right thing to do? His life right now is precarious. Please have someone call me. I need help.

    262-951-8755 cell–during the day
    262-547-6087 home–at night

      • Amber Rowen
      • June 15, 2017
      Reply

      I don’t know who you are trying to reach? I hope you know that the Hydrocephalus Association staff does not get these emails. They are written by & read in most part by members of the Hydrocephalus Association & their friends & family members.

      I have Hydrocephalus myself, but not NPH. I would not be a big help to you. Hopefully, your questions have been addressed by your husband’s MD by now..

      I am definitely available if you just need an ear, by email.

      Just keep in mind, that I know very little about NPH. As I have had high pressure Hydrocephalus since I was 3 days old

      • Samantha
      • November 1, 2017
      Reply

      This is an old post but do you still need help?

      253-335-9074

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