I was diagnosed in the year 2000. Life changed fast, all MS'ed up. I remained in my job, a multi function 'Drug store' with a computer department where I sold and fixed computers till April 2002. I began the job just before diagnoses in 1998. My skills became diverse and my mind inquisitive as it seemed to expand in my head while I was employed and recalled about 5 years later when I became Facilitator of this Self Help Support Group. I am actually thankful for my MS'ed up life slowing me down to this level to find my intelligence, as diverse as it seams 20 years into it. This AM, I plugged in a question to Google. Is the number of ms diagnosis decreasing or increasing since 2000 in Canada? I realized a question had to be answered first, Why is it so common here in Canada? As always our MS Society of Canada and researcher/blogger, Dr Karen Lee answered the question fast. We have the highest number of afflicted individuals here in Canada.
What other questions must be asked before deciding if the number is increasing or decreasing as to diagnosed people. I guess that is not important as the fact of the number of cases as one case of Multiple Sclerosis affects a community of people. I cannot find information on statistics like populations over the years. We just have lots. And new research for treatments increased over the last 20 years. The cure may be in that we prevent new cases from arriving, as when they start, they usually get worse (but not always). We will die with this, either by natural causes or by Doctor assisted help. That is the only certainty in this unpredictable disease. But if we never start getting sick, the treatment isn't needed. What if no one ever got MS?
Well for one thing, the MS Clinic in your community and the MS Society of your nation with it's divisions and chapters would cease to exist when the last MS'er in the community, in the province and in the nation departed. There would be no need for MS focused Self Help, Peer Support groups, Society offices would be closed and forgotten. I hope the staff we love find other jobs if that happens. Life has other diseases though, injuries and just living with no problems through to old age brings a need for support in a percent of individuals in any collective so the group's and society's mandates and goals would be changed. We leaders will still need followers, leaders will always arrive. We just need a focus and like minded individuals in our collective.
Speaking of followers, I hope there is a way to follow me here on Google Blog. I have it set up at the blog I usually write to, Walknroll.info. Subscribe onsite, I will be posting there more frequently on a diverse range of subjects. I had aimed for one a month but so far, I've got one every couple of weeks or more frequently. I think I have 2 links so far pointing here (for 'Weeducation" posts I have developing in a series) I have it for 9 years. This version of the site started in September 2000. It's presently sitting on a Canadian host at HostPapa. If you consider yourself a Canadian, your Website's server should be Canadian too, Eh? Stay tuned for more!
One of Cannabis's side effects that I've found in myself is painkilling for much of the MonSter's effects within my body. I do credit it largely for my being upright and mobile in this active MS'ed up life I live, 18 years closer to death than I was at diagnoses. Yesterday for example, I sat through a very important meeting with the British Columbia Emergency Medicine Network designing "Exit" forms. I did this wearing my "Patient Voices Network of BC" hat, my community hats of MS and the Handy Circle Resources Society for 6 hrs. We all would love to be discharged from emergency care fast with a smooth ride from the entrance door gurney to home again for wellness. I had smoked at least 2 joints in the early AM before my meeting and was feeling quite good when I arrived to the meeting. It had nothing to do with the cream I will discuss on this post. As soon as I returned home, the person who had gifted this cream to me was asking for a review. OK. So I wrote it. "Post it on my FB Page", she requested. I uploaded a PDF. "Not good", she said, "PDF Too large". "OK" I replied "I'll post it to my MS Blog and share that to your page". Smh. OK, here's the post.
What is Cannabis Pain Salve and how would you use it?
An independent non-government source had provided me a sample of some Cannabis infused salve for me to try on areas of my body where pain happens. This jar appears to contain an infusion of Lavender and Cannabis enriched oils. Nice.I have some condition deep in my elbow, no doubt because of my flat workspace from my laptop computer.Meh.Anyway as soon as I put the cream on the elbow, I could feel it working.As I rubbed it in, the pain was almost instantly reduced.After a span of a few days, it was gone, as long as I kept myself from leaning on my elbows.I do have to talk to my doctor about that part of my body, Pain does mean there is a problem that could be fixed now or long term care later if I wait. I had some dry skin on the back of my hand too.It did help that area hydrate. But why would you believe just me?
A second and third opinion
I spread the salve on another lady’s back.She had a deep bruise across the rear of the shoulder blade with no outward discoloration at that time.She reported a similar reaction to the pain reduction which overcame the pain of initial discovery of the bruise, which then healed painlessly fast after a heavy application of the cream.Her friend had a medical problem with her lower spine and took a handful of salve, smearing it down there.She reported it did help above her non-effective painkillers about as fast as me and the second lady.
Don't forget the cautions
The product itself is simple to make at home, or it’s the one thing you might get from a legal dispensary but won’t be as good as stuff you get from a homemade batch as long as you can verify cleanliness in preparation and try it on a small part of skin before spreading to open areas.Do not use on broken skin until healed over
You may know your MSed up life and think "What can I do with it? Education is diverse and does not always come with a teacher other than life itself. 4 walls, brick and mortar formal educational institution is good and all but many potential businesses and non-profits can be owned and managed by the MS'ed up community with a diverse range of realized skill sets they turned into a profitable business helping other MS'ed up people like you and themselves among the diverse range of potential clients in Northern BC. I took courses through "Make A Change Canada" themed for Business Development in Canada and Web Design which included basic instruction in graphic programs like Adobe Photoshop and design tools from coding with HTML to Bootstrap, PHP, SEO Tools, Blogging for Business which helps SEO on WordPress and other domains even here with this blog on Blog spot. That was all done at home with my internet connection. My latest website is ending soon, "walknroll.info" is my domain for now. Sometime over the decade I was enrolled, I had to borrow internet access from the Handy Circle resources Society. I am hoping now to have you support my next venture in creating a "Web Design Company" by looking at getting your own website and hiring me to help you manage it. Yes with all my volunteerism I do hope to start a business someday like others I've met along this journey wearing my MS'ed up hat.
Employment from others
When I was first diagnosed I was employed by London Drugs in Prince George in the Computer Department. Between 2002 and late 2007 I was unemployed with a diverse range of skill sets now including technical and a severely MS'ed up mind. This could be your story too, change the dates and place of employment. My Volunteerism, after focusing my MS'ed up mind, honed those technical skill sets and increased the web design skills I now use to help the Non-Profits. My Most notable use is the Website for our Carefree Transportation Society which I built and gave to them and the one for Volunteer Prince George which I help with site maintenance. I also facilitate the "Prince George StopGap Ramp project" through the Handy Circle Resources Society. I have met a few MS'ed up people working long past diagnoses at lumber mills and in other administrative roles for many businesses. Many volunteer in non-leadership roles too just as important sometimes working as labor intensive as any paid job.
Speaking of Volunteerism
I've met a few MS'ed up people in the field of Volunteer Management. MAID receiver Jenifer Werk was the President of the Carefree Transportation Society for around 3 years. It is a recognized non-profit which has been influential to BC Transit Accessibility since 1971, managing the HandyDART fleet in Prince George since long before accessibility was cool with public transit. She was also involved with a few other Non Profits as pure volunteerism too. Tetra Prince George is managed by Nadine Lindstrom, an organization that helps MS among all disabling conditions including age to live comfortable lives from home. Ask her all about what else she does on the Tetra Website linked above. She manages other volunteers who think outside the box to overcome challenges to life, as the basic aims of her organization. She, like myself, gets a minimal wage for the volunteer services provided. Our official, often unspoken, title then is "Professional Volunteers". I've come across other MS'ed up individuals volunteering time at places like St Vincent de Paul's clothing store, serving food at the Drop In centre and at the Salvation Army giving out groceries, sometimes hope as needed. One calls the numbers out at Bingo held weekly at the Activity Centre for Empowerment. That MS'ed up person helped us get the room we now use there.
An interesting volunteer experience and a personal drive to #EndMS
You might have seen his face in Mimes shared on social media. A blond man blinking some replies to comments in a GIF. He's used that volunteerism to raise money for Multiple Sclerosis Research. If
you’ve spent any time looking at reaction GIFs on the internet, you
know Drew Scanlon’s face. He’s the blond-haired man who shakes his head,
raises his eyebrows and blinks, in a series of expressions that seem to
say, “Oh … Wow. OK then.” His face, his blinking eyes actually, has raised well over $20,000 towards the MS Bike event. When we got diagnosed we became cash cows for the MS Society as well as our health care teams. Some of us use that to help research. We really are the face of Multiple Sclerosis. Not all of it is negative. Check out his efforts here
True successful Entrepreneurs
Health and Wellness
Golden Rays Apothecary
With life experience of MS Treatments, accredited study and self care of her own younger MS'ed up body, Ashley Provencher owns and operates (with a partner) "Golden Rays Apothecary and Wellness" on Quebec St in Prince George. This MS'ed up business has herbs and essential oils, Reiki training and general wellness information and products services. The Prince George MS Community is proud to recommend the services offered by this business and including them within our diverse community. Ashley is also a proud volunteer for the annual MS Walk in Prince George and can often be found managing the business community who have booths at our major event
Ocean Rehab & Fitness
I attended the MS Connection event in October, 2019 held at Richmond British Columbia, it was held in the Weston Wall Centre by the Vancouver Airport (aka YVR). There were all sorts of booths, and I happened to run into Megan Williamson, an adaptive coach & certified Personal Trainer at it. She's all that and while overcoming her own MS with a BA degree. There is a very cool website she likely designed supporting the adaptive fitness business she I assume she owns and operates. If you do not live in her area, she trains online as well. It's focused on Spinal Cord Injury and MS, among other disabling conditions. We could see Megan on the Virtual Self Help Group as a guest speaker. You should register for that monthly support if you reside in the Northern Regional Chapter of the MS Society of Canada's BC and Yukon Division's area. Contact them to find out more about it.
There are others I am sure across BC
I have limited knowledge of what conditions any business proprietor I encounter have. We may have a relationship with frequent business but it's always so professional and non disclosing. Well, often I encounter other disabilities managing businesses. None have volunteered our mutual condition like Ashley who I had personal knowledge of her condition. If you are a Canadian MS'ed up business owner or operator please contact me from my business website with your Business information and Web links. If you have a connection to the Prince George MS Community, or in Northern BC including the Yukon that would be nice too. I would love to update this blog post with your information
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 calledChronic 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
I am writing this as the burning sensation that I ignored for years (randomly and sporadically) in my mouth and over years is identified. I recognize it from occurrences long past in my personal history. It would happen as teeth were removed from my skull 1 by one over the years of my MS'ed up life from way before it was officially MS'ed up but with all the fun. I was just messed up back then, that "legend in my own mind" thing was building in the background of a busy life. Funny in a messed and MS'ed up dark way, Candidiasis is present in all humans. Thrush has a real name. It has a low possibility of being caused by Tobacco use. I'll go with that as I blame it for everything in my life, even some positive connections over the years (rarely), those problems now id'd and being treated with more than Cannabis.
What is isn't
It's not is a sexually transmitted disease however it has a slight chance of being transmitted that way between immune compromised individuals or group sex with infected individuals resulting on multiple exposure shared between that network. It's usually controlled in us by a unique balance of internal natural chemicals and bacteria as far as I understand, likely is tied into the Gut Bacteria Hype. There are worse things to worry about with a risky lifestyle. Healthy individuals should remain unaffected by human transference of the bacteria in normal interactions. Flair ups of "growth" happen with painful results in arm pits, groins (uncircumcised males), anus, folds of loose skin, and yes, the oral cavity and throat
What causes Thrush?
As far as I can understand, Candidiasis outbreaks on the body exterior can be caused by a number of factors including but not limited to simple hygiene, hot and humid weather, chemical imbalances and stress. In the mouth, same but other factors include drugs after surgery, antibiotic use affects the entire body in and out. Who suspected there are sweat glands in the mouth? Not actually called "sweat" glands, salivary glands in the body are located just below the ears inside the oral cavity. Candidiasis outbreaks begin at those glands where they produce moisture. That link above in the preceding paragraph should explain fully much better then I, with my limited understanding
Treatment
It begins and ends with Hygiene. Best tool is self care, a beginning and end to many things about life is Hygiene, it can be washed off with minor outbreaks. If Candidiasis is left untreated too long, a doctor may prescribe an Antifungal drug, but never ignore good hygiene. Untreated may do damage to skin, and internal organs may be affected by thrush. I think it could be a factor in the famous "tickley throat" of MS that makes us gag on a glass of water or gulp of air and in severe cases, new food and soups. If you have that often, best get it checked by a medical professional. MS and Candidiasis is the least of the reasons it could be, having an immune condition is enough to bring out random unexplained outbreaks of choking and Candidiasis which in the combo is likely deadly, particularly if something else not diagnosed is present. It is the most common way we perish naturally with this condition naturally. We'll always die with this condition too, often trying to live in comfort. Practice good hygiene before that point for the best protection against sudden death. Boil toothbrushes or get a new one. Even if you have no teeth and just gums, bush them with a soft toothbrush the wider the better. It helps remove food and dead cells, latent bacteria lingering and feeding the Candidiasis where it has potential to begin. It also improves blood flow in the gums, a very important thing for overall health. Any medication will always assist good hygiene, it never means to replace that basic part of self care. Here is a 5 minute video to remind you in case needed. It is geared to a younger market to lead your memory to a parental figure drilling it into you as a child and again as a teen, perhaps a spouse. Prevention is better than curing with medicine, what they should have drilled into you at those ages:
If you didn't understand above, here's a video that should help clarify:
It's 8 minutes, 37 seconds of education on Candidal. Thanks for producing this, osmosis.org:
Comment below if you've been affected by Candidiasis and how you treated it! I love home remedies, in all cases, protection beyond self care should always focus on natural prevention. Your way may prevent it in me and others! Thank you reader for viewing so far
According to the World Health Organization, it refers to the process of building the capacity of patients, families, carers, as well as health care providers, to facilitate and support the active involvement of patients in their own care, in order to enhance safety, quality and people-centredness of health care service delivery. It starts at a personal interaction between you and health staff attending you while you receive healthcare until you are healthy and continues with interactions with your family doctor.
https://youtu.be/Elmx1nkQDI8
My MSed up definition:
That is the world scope, above. I've had lots of practice with executing Patent Engagement from long before my time with the Patient Voices Network, unofficially prior to 2009 and often at the risk of being shunned by the healthcare service as an individual because of my personal views on my MS'ed up treatment. By the way, I'll just say "Cannabis saved my life" and be on my way with a puff from that part of patent engagement. My story told of my personal successes such as ending a tobacco addiction and staying upright and active 18 years into my diagnoses of Multiple Sclerosis which impressed many in the health care field and I feel helped Northern Health accept PVN when approached in 2009. It was a good networking tool. That attitude helped change the health care system slowly toward accepting it at my personal healthcare team's level and a large part of what I saw in the Patent Voices Network who have our own definitions of Patient Engagement with shared discussions, based on the life experiences of patents from all professions from health care to homeless. O and it's not always about Cannabis but a few of the best engagements had some involved. Once a patent has that relationship with doctors and fitting with the theme of this post, Patent Engagement is a collective effort in groups as well as found by the health care experts.
How do we affect the health Care System?
Here is one blog post I found through the Patent voices Network. Overall at many levels of the health care industry appears positive with these partnerships as far as I see. Here in British Columbia overall, people with life experience in health care working together with professionals in the Health Care profession have influenced many other patent's and their health care progress through out their life journey, while interacting with BC Health from family doctors to specialists in every health authority. Projects we worked at with the health care authorities included and influenced emergency room procedures, Person and Family Centered Care, procedure specific reactions, other problems faced by medical professionals in communication with their patients and many more situations specific to conditions. That's the work of Patient Engagement and where it leads. At the BC SUPPORT Unit in Vancouver BC, it's defined as this and what it isn't, in a collective sense.
How will it evolve?
Patent Engagement is also encouraged while medical students go through courses at UBC and UNBC, as far as I understand. We're all patents, even medical students. The Northern Medical Program began at UNBC in 2000, to overcome to a severe doctor shortage we face in Northern British Columbia. That was the year I was diagnosed with Multiple Sclerosis in UHNBC (then known as the Prince George Regional Hospital) while my dad died in that hospital. The school has graduated well over 100 new doctors who remained in our areas, while UBC educates doctors for use in the south-coastal and island health authorities local to them. People like myself are even sitting at national research boards on patent councils at the BC- Regional SUPPORT Units and within the PVN influencing medical professionals as well as their profession nationally with Patent Engagement. That's a great question on how it will evolve. Perhaps we all need to learn self care and not depend on the health care profession except for serious medical problems and regular checkups to prevent chronic development, all of Canada has to get on board with it as well. Most of the provinces have a Patent Voices Network and a SUPPORT Unit now, and in the USA much information comes from Patent Advisory groups like ours. It will evolve globally however it manifests.
Do other MS affected people sit on these boards?
Yes, we do. I've made provincial MS connections on both the Patent Voices Network of BC and at the BC SUPPORT Unit. I have found similar mindsets in many from just our local MS Community and widespread across our MS'ed up province taking on civic roles of accessibility awareness, healthcare in the province or your local health authority. I hope to find them trough the Regional SUPPORT Unit I'm making contact with this afternoon too! What's this Regional center? We're passing on our knowledge of overcoming barriers that we face to people that see those barriers while in their professions dealing with people with all abilities and can make the changes so many of us need. Be the change, it starts with you. Not just with research. We make life better with our wisdom of life experiences and having the time to sit on these needed boards to address these issues. We can become accredited citizen scientists. This makes life better for everyone with any level of ability. Access blocks no one from anywhere, it's needed in public spaces as well as healthcare for everyone.
What is "Assisted Suicide"? It's 'Dying with Dignity', Medical Assistance in Dying (MAiD) . Beyond being the cure and from what I understand, a person makes a personal decision at any stage of their MS'ed up or otherwise afflicted and potentially imprisoning body and whatever life they lead at that particularly sound minded point in their lives and realize the only escape is death. It is the only cure for MS in 2019. Well, providing they meet the criteria in the link I posted above. You cannot set it up in advance for it to be done if things get worse. In the past, it was illegal to commit suicide even if the person was unable to do it themselves the person assisting would often be considered a murderer by many and the law, or worse if the person survived. Self monitored suicides often resulted in the person living much worse off then previous too, costing much heartache and health care costs. But it is deeper than that. I can only imagine that to be the end of things. I have yet to see this discussed at the Patient Voices Network, but I am sure it will "arise", All patents will have this as a personal decision in the back of their minds perhaps. But talk to your primary care doctor (*including at "walk in clinics") found in many places in Northern BC and elsewhere who can direct it from there.
What is the procedure?
I honestly have no idea at the moment. I can only imagine. This is Canada wide too. As I wrote above, then posted the first link and verified, a visit to a Primary care doctor is step one. Beyond that is I assume a series of appointments with mental health persons and other "life management" professionals and specialists. This link from Northern Health may better explain it. It also contains contact information from a doctor trained in the procedures local to our health authority. They may be able to provide local contact info if from other areas. The Prince George Multiple Sclerosis community has had the first 2 persons who chose this way to go. We were sad to hear of the first one, a free sprite named Patricia Irwin. I had a personal connection to that person and do miss her. No mater what the cause, death is hard on the survivors. We often only hear about the end and the cause. This is another end to a life with Multiple Sclerosis in Canada though. Better to do it "professionally" I feel when walking and rolling or strolling in front of a semi is not on option. Control your life and your end with style and dignity, just like an MS'ed up life should be. I may get a story from a person I talked to who was speaking on behalf of the second one I learned about, Mrs Jennifer Werk in August 2019, which will update this post. Stay Tuned!
