This interview was conducted with Brian Thomas who received his first and only shunt approximately two years ago. Brian has kindly shared some of his experiences and challenges since just prior to his diagnosis of having normal pressure hydrocephalus.
When were you diagnosed with hydrocephalus?
I was originally diagnosed with pneumonia then meningitis and put on antibiotics for both these conditions. I eventually went back to work after which I was diagnosed as having vertigo as I was still suffering with dizziness and the sensation of the room spinning when I got out of bed.
When my condition did not improve, I saw a neurologist who diagnosed Normal Pressure Hydrocephalus and advised that even though the condition cannot be cured it can be managed. I was approximately 57 when I was diagnosed.
Has living with hydrocephalus changed your life and/or your relationships?
There has not been any change in my relationship with my wife. Some of my family are a little standoffish because they do not want me to get hurt.
Were you working when you were diagnosed? What was the impact on your manager and job?
Management seemed to be concerned that I would have an accident at work resulting in a large payout for me and seemed to be trying to determine if I was still fit for my job which I have now held for almost thirty years.
Do you have a programmable shunt? Have you had any revision operations? Have you needed any adjustments?Outcomes of the revisions and/or adjustments?
I have a programmable shunt and have not needed any revision operations. I have had a couple of valve adjustments, the last one being approximately 18 months ago. Everything seems to have been fine since then but I do have a couple of concerns. My concerns are I was not provided with any information re my shunt or any limitations such as not being scanned when passing through airport security.
What have been your biggest challenges since developing hydrocephalus?
I think incontinence and short term memory issues have been my biggest challenges with the pressure changes in my head when a storm is brewing being the third worst challenge. My long term and mid term memory are fine but I have a few issues with my short term memory. This can be problematic when trying to complete a task or
request. I often have to ask people to repeat themselves.
However, I would say my good days far outnumber my bad days. The best experience has been returning to my old self after treatment and seeing my family becoming more relaxed around me.
How did you learn about the HSA?
I Googled the hydrocephalus condition and support when I was diagnosed. The Hydrocephalus Support Association was one of the entries showing in my search results.
What made you decide to join the HSA? What have been the benefits?
I joined the HSA because I did not want to be alone. I had never heard of hydrocephalus before my diagnosis and I wanted to be able to talk to others who knew and understood the condition and the effects it has on you.
Since joining, I have learned a lot about hydrocephalus, the experiences of others with hydrocephalus, the pressure monitor that is being developed, and come to realise that everyone else with hydrocephalus is as normal as I am.
Are you aware of the NPH Peer Support group?
I am aware of this group but have not participated yet. I think it would be a good networking and support group.
Thank you Brian for sharing your experiences with the HSA community.