Story of the Prince George MS Self Help Group 2005-2019

The Beginning

I was diagnosed in the year 2000, as my father died of leukemia and a year after my common law wife for 5 years asked me to find a new home.  It was a week after that event that Optic Neuritis took the vision from my left eye for a few hours that lead to my diagnoses.. I ran into an old flame somewhere along that journey and kind of rekindled, but she was damaged with an addiction to alcohol, young kids and that toxic relationship took almost a decade to transpire into the folds of history.  It began to get distant around 2004 as I discovered mental health challenges brought out by MS DMT's used in the MS'ed up initial years.  Coincidentally, I began to get my head about me that year as I quit tobacco that year in August 2005 and became the Facilitator for the Self Help group by very early 2006.  It was a very MS'ed up life with mega extremes both positive in strange ways and very negative without the option for assisted suicide some of which you'll find on previous posts here if you look back through the earliest posts.  Some of the other blogs attached to this blog that I created in those days are pretty strange in some posts.  Somewhere back there I envisioned today and at least the Virtual Self Help Group streaming across Northern BC Including Prince George at the South East Corner of that region.  That pipe dream of mine was international, starting here in Northern BC.  That is now a reality in 2019, thanks to a new creation of the MS Society spoke about in depth below (the Northern BC connections).  For more information on that, please contact the Northern Regional Virtual team  team via the Northern Regional Chapter of the MS Society of Canada.  It's so differently MS'ed up now in a positive way!  Through a very rough first five years feeling alone and MS'ed up finding myself and others, I finally found the group and rapidly saved it from extinction in Prince George as it went through it's own rough time.  I hated the alone part with MS.  All I had to do was quit tobacco use in August 2005 to find myself and others found me.

The first year

I took over from the previous (before me title) President.  It was a "Support Group" then, fully under the Society.  The previous meeting had held about 20 people in the Northern Health Building across from then Prince George Regional Hospital.  I came in not expecting to take over, but as I sat alone with one other member I had known from previous meetings and the "Exercise class" that was held weekly in the Rehab room of that hospital beside where the MS clinic was at that time, I envisioned one possible scenario of the group folding.  The fellow I was sitting with didn't have MS, he was afflicted with Parkinson's.  There were 2 in the exercise group with Parkinson's.  The group I saw supported many and everyone is affected by MS.  Anyway, he and I sat there and talked.  I asked what is was he did for the group.  He mentioned he took notes at the meeting, but didn't do it for anyone but himself.  I asked him, since the last President had left, did he mind if I called myself the "Facilitator"?   I could not be a Chair, or a President" I explained, and I called it a "Self Help" group then.  A facilitator, as far as I understood, set the initial and cemented direction for the group and found key people to manage.   He didn't care he said, and that was his last meeting but I did see him at the MS walks over the years.  He's still a part of our community.  Yea, my community shared in a MSed up way.  Over that first year, I defined what the facilitator would be the direction we would take as an entire micro community within the macro community, affected and afflicted were defined and accepted.  By my definition the MS Society Chapter including the advisory board overseeing the local chapter were considered members when they were in our local community, the Staff of the MS Clinic as well.  Visiting doctors from the clinic and patients from Northern Health's area had an invite to attend if in the community.    There is no one more affected then our support teams.  That is what I thought the Facilitator should do, I would own the position unless someone official told me to stop who wasn't local.  No one did.  I did nothing against MS Society policy to discourage the partnership they had an inkling was developing.  I set a vision and basic goals for the Group that included them. "No MS'er will feel alone with this disease in Prince George, as long as at least one person has it in this city and sits in this position".  It was good and accepted.  We would be here for all affected by MS.  I also set up to connect the group with the MS Clinic in PGRH and the Prince George MS Chapter amid my own personal problems with those support sides I considered "affected by MS", therefore remote members of the Self Help Group.  The Chapter is finical support of activities and advice for the group including some personal and group supports as well.  The MS Clinic is an Educational source for the entire community but not just my community.  My original aim was to have a rep from both sides attend local meetings monthly.

The Clinic

I was diagnosed in 2000, through this clinic.  At the time we had a mobile MRI unit come through for that test that lead to the diagnoses.  A Magnetic Resonance Image is taken of the brain in the most common way a diagnoses is made.   Another way was called a "Spinal Tap" back in the day.  Once a person is diagnosed, they have a neurologist appointment to confirm the diagnoses soon after if you have the required markers happening together.  That process is still happening today but may be faster.  Most in our northern region health authority get diagnosed through the MS Clinic in the Hospital at Prince George like I and others before, after me did).  I needed to connect the group that in my mind existed.   More recently it got an open MRI Table in a lab, after it became UHNBC.  I created an Email address at Google for initial official contact.  This address for this blog in fact.  I saw electronic communication as the best way to connect our 3 sides, the triangle was forming in my mind..  For the clinic, they would need to have several Nurses fill the position after the Nurse who formed the first of the Prince George clinic left the position and new thinkers came to fill that position.  It is interesting to note that write ups about our Clinic in Prince George claimed many other MS clinics in North America were modeled after ours following things done here and staff.  It also services Northern BC and the Yukon through Northern Health.

The Chapter

I began to volunteer with non profit office  in 2005, called the Handy Circle Promotions Society back then.  I first learned about blogging and webdesign there, using a simpler version of HTML for one of their umbrella societies concerned with accessible housing.  That office was beside the Prince George Chapter of the MS Society office. In my personal life, I took an online course from what would become Make a Change Canada called "IBDE".  I would complete that course in 2018 after using Handy Circle's computers to begin in 2005.  That MS Chapter office had to go through a couple of people until the right person was hired for the newly named "Event Coordinator" position I'll describe in the first 5 years part below.  My first contact with the Society on Self Help business was not well received.  The Office person refused to give me a check made to the group, so I could deposit in the account I had just been given signing authority of with 2 other Self Help leaders.  They were honorary members from the time before I took over and seemed to be OK with my leadership and use of funds.  After convincing the office of my status in the Group with their help, I was allowed to take the cheque to the bank for deposit.  I still would not be warmly received as a member (only as a person with a disease) and not be allowed at board meetings.  I had no official dealings about the group and the chapter until they hired the one who was there until it closed but still denied board meeting attendance or knowledge on how to join it as an executive.

The first 5 to 9 years

It was about 7 years into my diagnoses when the MS Society of Canada, at least in the BC Division changed the title of the office position and called the person an "Event Coordinator".  This is the one paid person they hire in a region.  I welcomed this new person with her title who respected my position at the group.  I had convinced her to attend meetings in the new position I created for the group, the Lesion representing the MS Society of Canada, through the Prince George Chapter. I explained because she worked in the office that supported MS people regionally, she was now officially "affected" by Multiple Sclerosis and within the city of Prince George. She did not have to have the affliction itself.  The MS Society was accepting of the time their Event Coordinator spent within the community, so was I.  I should explain, I consider myself a legend in my own mind.  She would also do hospital visits for MS patients in the hospital as there are a few long term residents with Multiple Sclerosis, and that was a job I felt was for the support side as a "Peer Support Worker" or team (a remote version of someone to talk to is linked).  I felt we needed a live person, a face.  However the MS Society paid that one employee do that, it did fit in with the vision of support  I had too so I thanked her the first of many times for our shared interest in the community.   Through that person we learned of MS Society events and my job became promotion of those events to the community.  Those events where our faces and stories are needed to be seen to help the Society to help us.  We became "cash cows" for Health Authority staff and our supporting societies with our diagnoses.  Month of May.  World MS day.  The MS Walk of every year.  Even more!  Promotion in a Pre-Facebook world, early internet no local boards and no coin for advertising.  We needed a medium, a gathering of community members face to face.  One of the first things I did was set up the group to meet in a semi permanent location at the First Baptist Church around 2006.  The Reverend at the time had a daughter severely afflicted by Multiple Scleroses, she never lived to see 2010.  But in that religious world, no one really dies.  Her spirit was in the community.  She taught us what a cure is even today, but MAID should have been here for her.  She also died with dignity but in a very twisted diseased and imho, undignified way so common.  We would continue to use that space until the fall of 2019.  It helped to have a solid meeting space, even if we moved to the street for a couple of years before the local Chapter closed before we would regroup with the help of a new remote Chapter.

Facebook

My first form of support came from a US based website called "WebMD".  It had group message boards back then, in the internet world before Facebook.  A year or so into pondering that, the Event Coordinator and I discussed strategies.  I was just learning about Facebook back then and its power.  The society paid advertising and I got the word out through Handy Circle.  Around 2007 A Facebook page was created.  In that part of the job of Facilitator,  my promotion campaign needed a free outlet.  This page was international and quickly grew to attract an international following of contacts I had made in my first few years with this disease.  It could not be for local events. I had begun to realize the global connections to MS really soon in my MS'ed up life.  Before I found anyone local.  Later in our history the FB Group-Group was formed around 2015 as part of our "regrouping".  If you are from the planet earth and affected by Multiple Sclerosis please join the FB Page,  If you are in the area of the Northern Regional Chapter of the MS Society of Canada, please join our  FB "Group-Group".

Guest speakers

 The chapter suggested a couple of people I could ask ask to speak to our group.  One was from the Tetra Society of North America, who design devices and tools to help people afflicted by a disabling condition like ours live normal lives.  Another speaker we had, had talked about her experiences with a new procedure called Chronic Cerebrospinal venous insufficiency or CCSVI.  She had just returned home from having the procedure overseas. The procedure caused a lot of tension back then.  It was a national headache felt locally by the Society, our community and the Clinic.  Our most attended meetings had guest speakers and the controversial topics like the CCSVI brought the most.  We also had speakers from the Patient Voices Network and other groups I networked along my path through Prince George and the Province.  Only once a guest speaker showed up an no one else did.  Ok 2 times.  Once recently in 2019

 Triangle of support evolves

Around the same time as the Event Coordinator was hired , a nurse was assigned to the Multiple Sclerosis clinic in the newly named "University Hospital of Northern British Columbia" who saw the connection to the group as a positive thing and over time would give input into meetings and at least one guest speaker.  The clinic at that time as well began a relationship with the local chapter office and that brought many educational events into Prince George which the community promoted.  Once we had an annual event called "The  MS Wellness Day" which ran a few years and invited affected persons across Northern BC.  I proposed a "Triangle of Support"  (explained below) in Prince George and submitted a logo based on that, to be used in the event.  It had Northern Health in text running down the left side,  MS Society of Canada running down on the right, and it was all supported on the bottom by the community.  It was MS Red, on blue, black or perhaps white background.  It was rejected anyway.  If I find the logo on my machine I'll upload it here below this block.  About 9 years into my diagnoses, the chapter in Prince George closed which threw a monkey wrench into the triangle of support this city enjoyed anyway.  It could still happen though with the new chapter but not just for Prince George or Northern BC even.  The Event Coordinator for the Northern Regional Chapter is in Kamloops sharing an office with the Southern BC chapter in 2019, and there is another clinic there.  Same in the lower Mainland for the BC Division office and UBC's MS Clinic.  MS'ed up people get under the triangle in British Columbia?  Could see it.

10 years to now

The Event Coordinator for the Prince George Chapter sat with me at the First Baptist Church while we waited for people to come in until the chapter closed.  While we were there, we discussed MS events posted on the Facebook page and formed the FB Group.  Often brainstorming in a mutual uninterrupted meeting of focused minds is needed in many organizational settings.  We had at least an hour a month if needed to discuss MS in the community uninterrupted.  Recall the Legend in my own mind thing I have?  I'd often talk to the Mayor of the time or Council and they would know me by name.  Once a Premier of BC said "Hi Ken" and shook my hand on a street as I passed.  That was in Vancouver.  I  like to think kept MS alive in the Prince George city offices, they know MS lived and worked among them thorough more then just me.    Every now and then a newly diagnosed person would arrive randomly at the church, as it does today and very occasionally.  I debated if our time was useful there more then once and the meetings got shorter.  I facilitated a phantom group.  In the years after the Prince George MS Chapter was closed, the vision of "No one is alone with MS" became more real in the group as I alone attended.  I said good bye to the church and met people one on one wearing a mental hat of Multiple Sclerosis Self Help Group Facilitator.  Facing my own homelessness in my community, I learned that side of living with Multiple Sclerosis.  I learned of MS'ed up people who were homeless and on the street.  How could those people be helped?  I learned of suicides, common among that crowd MS'ers included.  It's not an easy life but even down there, MS meant Must Smile or die trying.  The lesson of the alternative and its stressors was painfully real then.  It was my lesson on how not to let MS beat me.  As long as those MS'ed up street people had someone to talk to, they were fine.  A few had addictions, we're not immune to that.   Many of them were attached to the Clinic at UHNBC.  The group did not meet but those MS'ed up people had my number and coffee was free in the food banks we frequented.  That was a small percent of of the Prince George community I met, many of them were temporary residents of our community.   We also had coffee in some diners but had to limit those meetings to times we had money.  Often they paid for me or we went "dutch".  That was the most common challenge of MS'ed up people I encountered during that time.  Lack of money for social activities all month.  Most MS'ed up people I met were not homeless but many were homeless at risk.  Most I met were Female too, it is about a 60-40 split of the genders of diagnosed people.  I began to wonder if the fact I was male in the Facilitator position was detrimental in the MS'ed up community locally.  No one told me to stop using the tile so I continued as the Facilitator for the Phantom group unless I was told to stop by a society I felt along with with my community had abandoned us in some ways.

The Northern Regional Chapter of the MS Society of Canada

A few years of that and a newly diagnosed lady came forward to where I work at Handy Circle, around 2015. She said the community needed a meeting room to attract diagnosed people, she was feeling alone and wasn't real impressed about sharing a disease with me alone.  I discussed with her about the lack of a society being a challenge to that but I would do what I could to save her from that fate of our shared diagnoses.  A day or so later, I got an Email and learned of a new chapter, could I find time to meet with one of their board members who was local in my community?  I did that almost right away and the first thing on our agenda was setting up a meeting room.  The newly diagnosed lady attended as well. The new chapter mirrored the region covered by Northern Health's MS Clinic in UHNBC.  That new region covered Northern BC and up to Whitehorse in the Yukon Territory.   I contacted the Church shortly after that who welcomed us back and we had our first meeting with the 3 of us in place.  I placed the diagnosed lady in the position of Board Chair and the Society Board member as our Lesion.  The new chapter was formed in Nelson BC with a newly hired "Event Coordinator" who would retire less then 2 years after that, which moved the Chapter office to Kamloops.  The new job of the Self Help group was to help the society repair the damaged feelings of the Prince George MS community and funders including the City of Prince George who had hosted the chapter for better than 20 years.  The group moved ahead.  2019 sees us in a new home partnering with the Mental Health Community.  It's another community that MS lives in.

Northern BC Connections- Virtual Self Help group

In 2018 the Northern Regional Chapter decided to sponsor a "Zoom" based once a month conference call to MS affected individuals and group leaders found throughout their area of responsibility for a remote "long distance" Self Help group.  This virtual group meets once a month on the 4th Friday of the month.  As stated above, contact the Northern Regional Chapter to be placed on the mailing list for invites. It has shared information on grief counseling, some minor drug addiction suggestions, a toll free number for the Regional MS Clinic, general support for MS and non MS stuff. Oh yea.  Cannabis research too.  We're basically just a fun MS'ed up group mostly not tech savvy & mixing rural and urban attitudes of life with MS

My impression how it stayed together in Prince George 2005-2019

It began in a time of change in Northern Health.  Well, BC health overall.  OK The macro society of British Columbia as a whole went through big changes since 2005.  Prince George is ground zero for Northern Health,  2005 was the beginning of what was to come for health which ultimately drove all other changes.  I quit smoking in August with Northern Health support as well as QuitNow Canada. Unofficially Cannabis had the biggest effect on my heath and research is finding the health of our community.  My doctor and the MS Clinic wanted to see me again after booting me from their offices in 2002.  The alone feeling is very scary.  Our futures are never written.  We make the path we follow.  Mine led to this group first as part of my therapy and connecting Multiple Sclerosis to other like minded groups like the Patent Voices Network of BC, the BC SUPPORT Unit and its regional centers and local groups concerned with accessibility and transportation.  We all need connection with like minded individuals.   One mind is needed at first with an idea, then to connect at least one mind to collaborate and grow with connecting ideas to reach others.  The MS community when singled out in all its diversity needs that triangle of support the group offers.  For the triangle of support to exist it needs those collective individuals to share that network.  It would not be complete if one side was missing, it is a symbiotic relationship.  Patents and affected people would not survive if the Medical support or the collective support of the Society, which also supports the medical support, in a never ending flow of support to the community which if no one had MS the whole system would fall apart so the group holds us together as we find there is never enough support.  Like I keep saying, it's MS'ed up.  We stay together as it has to exist even if only one MS'ed up individual exists in a community.  The local MS'ed up Community of patents, affected individuals and a mixture of the 2 sides forming the base, MS Society and Health Authority MS Clinic along each side growing across the region collectively with all communities to cover the province collectively in every province where Multiple Sclerosis lives nationally.

Future of the group?

As of  09(Sept)-10-2019 our group officially moved to the Activity Centre for Empowerment (ACE's)  located at 1139 - 6th Avenue in Prince George.  Just off of all the construction downtown that is occurring in 2019 to continue a few years into our collectively MS'ed up future you will find a parking lot between ACE's and the Downtown Motel.  If you use a walker, go chair, cane the entrance off of 6th is accessible.  If you have a wheelchair, some may find it challenging in a narrow hallway.  There is an entrance beyond that before the Cost recovery kitchen.  There is also a door on the parking lot side but it's not accessible.  Our first meeting will be held there on September 19th of this year.  If you are restricted to a larger device, it is recommend to use the bathroom before arriving so you will be in comfort at the meeting.  Perhaps in all the new construction another meeting area will open up, but in the meantime I am so glad we found a home for however long it lasts this time.  I do hope it survives me.  Well, if I couldn't kill it, it must have a reason for existing so it will always be around for the newbies and vets.  I have to find that person to succeed me someday and I cannot just walk away...  Roll even.  This new location was due to networking.  I have been a board member of the Mental Health Consumer Council, an established advisory board looking for an advocate to speak for mental health when it clashes with Northern Health for a number of years

Welcome to our new meeting room!  Our time is between 1 and 3pm