How to form a peer group for people with Hydrocephalus or NPH

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by Gilda Katz, MSW

I first had the idea of forming a peer support group for people with Hydrocephalus when a teenaged client with the disorder approached me about “wanting to meet people like me.”  I called the Spina Bifida and Hydrocephalus Organization (SB&H) office and they offered written information for my client, but, at the time, had no support group specifically for individuals with hydrocephalus.

Several years later I myself was diagnosed with late onset hydrocephalus at age 62; I too wanted a support group.  I had the triad of symptoms usually associated with Normal Pressure Hydrocephalus (NPH): urinary incontinence, trouble walking, and memory problems.  I was very curious about other people's experiences with the condition, but no group existed for me either. On the social justice adage “be the change you want to see” I decided to offer my services as a volunteer to facilitate a self-help group at SB&H for people like me who are adults living with hydrocephalus.  I felt that my group work experience with diverse populations as well as my personal situation qualified me for the position.  I have worked in groups with psychiatric inpatients, clients in counseling agencies, prisoners, and parents of children with developmental delay, as well as the children themselves.  Shirley Edwards, the SB&H Executive Director at the time, was very receptive, and thus the Adult Hydrocephalus Support Group was born. 

For the past 9 years, we have met regularly and kept an active contact list.  I have developed a number of strategies for the group, and made a number of close connections with the members.  Although my social work background helped my work significantly, I think that a volunteer without such qualifications would be able to do a good job with a little guidance and desire–hence this article.

The Adult Hydrocephalus Support Group meets once a month, and consistent with the SB&H mandate to serve people across the province, we offer a toll- free telephone service to people who want to join us from out of town. Some members bring family to the meetings as well.  The format is open ended, and mostly discussion based. 

Requests and referrals to the group come from our web site, notices in Current magazine and the Current Bulletin regional newsletter, as well as through emails or telephone contact with SB&H staff.

Over the 9 years the group has been operating, we have welcomed some 25 people and their families, and currently have 8 regular attendees.  Usually, new participants and their families are not familiar with the diagnosis or sources of help. We offer verbal support, friendships, publications, and the SB&H Annual Meeting with experts in hydrocephalus presenting papers. We also share our own experiences with doctors, surgeries and shunts at the regular group meetings.

If the person is undiagnosed or has not seen a neurologist or a neurosurgeon for a while but seems to be showing signs of hydrocephalus (walking difficulties, urinary incontinence and memory difficulties), we suggest a variety of medical support services, starting with their current family doctor.  One of our most useful resources is our own diverse experience with neurologists, neurosurgeons and the medical system in general.   We all have good suggestions and strategies for connecting with the best support available.

Just meeting with people with the same diagnosis is in itself therapeutic. Recently several group members participated in a research project on hydrocephalus conducted by Dr. Safraz Mohammed and noted neurosurgeon and member of the SB&H Medical Advisory Board, Dr. Michael Cusimano.  This research is ongoing, and will contribute more general information to aid in more accurate diagnosis of Normal Pressure Hydrocephalus. Alex McGirr, a second year medical student at the University of Toronto with an interest in the genetics of hydrocephalus, has joined us this year.  As with Dr. Mohamed his presence adds richness to the group with medical information.  Also, due to the research interests of these individuals, the group members are afforded a chance to give of themselves through sharing their stories which will add knowledge to the hydrocephalus literature.

CONCLUSION

If there is no Hydrocephalus group in your area, and the chances are there is not, the Spina Bifida & Hydrocephalus Association is there to help you get started. You can begin by piggybacking on to an existing service that may be willing to share space with you. For example, many other neurological conditions have symptoms in common with hydrocephalus. So, you might consider working with an existing brain injury/condition related group to start. 

Staff at the Spina Bifida & Hydrocephalus Association of Ontario is available to answer any questions about starting a group. They have established connections in communities across Ontario. Feel free to contact them and have a discussion about your needs and ideas.

Note: The Spina Bifida & Hydrocephalus Association of Ontario is grateful for the hard work and dedication of Gilda Katz. Her single-minded determination and boundless compassion continue to benefit the people who look to this group for support, understanding and information. Thank you, Gilda.