← Return to NPH (normal pressure hydrocephalus): Let's connect and share

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@colleenyoung

Welcome back to Connect @thegoodwife.
It’s been a couple of years since you last wrote about managing NPH. How are you and you’re husband doing?

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Replies to "Welcome back to Connect @thegoodwife. It's been a couple of years since you last wrote about..."

I had a shunt inserted in 2014 after having problems with balance, incontinence, and difficulty walking.  Gradually, with therapy, returned to almost normal.  Still can’t ride a bicycle, but am able to play tennis with no falls, so far.  Go for it!

Dear Colleen,

Yikes, so surprised to hear from you – I have helped many others, but not received any response – help or feedback from Mayo.

The Seattle area neurosurgeons have been a great help (UW, Harborview and Swedish and a private practitioner), as was the Hydrocephalous Society. We are an active part of a monthly support group at Swedish Hospital , funded by a Microsoftie, who contracted NPH after a fall. My husband’s NPH was the result of a AAA surgery. We are very proactive – unfortunately, his mobility is not the same level as before – good around the house – but not much in distance, but he is mentally sharp and very able. Recently, he has joined a Seniors exercise group – 3X per week and enjoys it a lot. He uses a cane, but for travel or special situations, we have a lightweight wheel chair that I can lift and easily push. I drive us.

I would encourage Mayo work more to return contact requests . NPH is not widely recognized and may people could get necessary information and support to be able and have a high functioning and lovely quality of life.

Many thanks for your email,

The Good Wife

Hi Pedie,

We’re doing well, but you win – playing tennis – hurray! My husband can play golf and that is a great gift for him. He was totally incapacitated by the time he was scheduled for his shunt. We celebrate that he can now walk and joke and have a good life. Distance walking is not in the cards for him, but he is very able around the house and in places that he feels comfortable. Glad you got your shunt and that you are enjoying life! Hope all your serves are aces. Regards, The Good Wife

Good to hear from you too @thegoodwife!
There have been quite a few changes over the past couple of months on Mayo Clinic Connect, the online community connecting patients. I am the Community Director dedicated to this project and we have a team of moderators to help connect people and ensure that every message gets a community response. We’re also updating the design and improving the functionality so that it will be easier and easier to use. Have you visited the homepage? See https://connect.mayoclinic.org/ You will see more updates in the coming weeks and months. And we’re always open to ideas you may have to make it better 🙂

Feel free to private message me any time. Simply click @colleen_young and then click the envelope icon.

This discussion is a good start to increasing awareness about NPH. Thanks to you and @pedie when someone searches for NPH they will find someone to talk to.

Let’s keep the conversations going!
Colleen

Delighted to hear that you are making such a good improvement. I have found that those of us, with a connection to NPH, have found that awareness and support are not readily available. We were lucky to have a fabulous neurologist, who was dismayed with my husband’s sudden decline after the AAA surgery. As with others, we had to jump through all the hoops to eliminate dementia, Parkinson’s, Alzheimer’s, etc. and then get into the surgical schedule after a 3 day drain trial. Our surgeon, was the Chief of Neurosurgery at the UW Medical Center, and he was very responsible making things happen and personally doing the surgery.

It is terrible to see your very able spouse melt into a shell of a person, not even able to turn over in bed, by himself and lose his animation. I can’t tell you how many medical people, I have had to educate on the issue of NPH and understanding that until the shunt is opened to the final setting and the brain has had time to rebalance, the individual, will always have delays on response, whether physical or mental. As the patient returns, the caregiver and friends will often see improvements that he or she is not aware of. Strangers, medical or not, often rush to help or interrupt and can be problematic. Having a support team to cheer and celebrate improvement and success is vital.

It is important not to let the patient being diagnosed to lose important muscle strength prior to shunt surgery – preserve and get ready to rebuild.

Good Luck,

The Good Wife

Hi Colleen, I was directed to this group by John Bishop, and notice that many of the posts are a few years old. Is this group still working? I ask because I have been diagnosed with "probable NPH" and have an appointment scheduled for Mayo JAX in mid August…. Connect has been a godsend, but had missed this group. So wondered….neurologist where I live insists I need a spinal tap, which is a counter-indication when you are an Adhesive Arachnoiditis patient, so have done all I could to get into Mayo, and looking forward so much to the consult and second opinion about the tap….NPH is progressing and symptoms are becoming more and more worrisome. Are you there? If so, all the best, and would love to hear from you and other NPH patients….Best, Joan