MS Walk last Sunday 2021

Wednesday, October 30, 2019

Cannabis Pain Salve

Prelude

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

Wednesday, September 18, 2019

MS Non-profit leaders and Entrepreneurs

How to keep busy in a MS'ed up life

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


Sunday, September 8, 2019

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

Lets fill this room every 3rd Thusday of the month between Sept and June!
Welcome to our new meeting room!  Our time is between 1 and 3pm

 

Saturday, August 31, 2019

Thrush in MS

 Thrush? 

What is Thrush?

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

Tuesday, August 20, 2019

A Patient Partner post, Patient engagement

What is "Patient Engagement"

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.






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Friday, August 9, 2019

Assisted Suicide is dying with dignity

What is it?

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!

Thursday, April 4, 2019

Perhaps more than a pipe dream

Well, this Blog was always supposed to be promoting life with Multiple Sclerosis  Part of it is dreaming.  Dreams always have a chance of coming true I've found, fantasies fool you into thinking they can be real and often bring a facsimile of reality but leave you broken after you figure it out.  Hopefully before you die trying to make it a true dream of reality.  Such is life with this condition.  Anyway my dream beyond "cures" is accessibility focuses and independent free travel.  I'm willing to wait for free.

I live in Northern British Columbia, Canada.  It's a wild remote land bordered on the south by Via Rail and the Highway of Tears aka Highway 16 West.  I actually live now on that highway,  There are 2 routes between Prince Rupert (PR) BC and Prince George (PG).  PG sits on the southeast corner of Northern BC and is known as the Hub for British Columbia, the gateway to and from Northern BC by water, land and air travel.  All through it's history through before the European invasion.  Settlements discovered in Northern BC may be the oldest on earth, as humans migrated across the Bearing Sea on a land bridge and headed south along the then known as "Turtle Island"'s western shores!    Scattered through all that remoteness north of Highway 16 are diverse communities where the "simple" lives are led.  Well, those of us living in the urban life in PG or PR perhaps next to a busy highway full of noise, it's often a throwback to the simpler life of our youths.  I grew up in a community in Northern BC in the 1970's and 80's.  A community of around 2,000 individuals, 60 Km north of Highway 16 from Vanderhoof  BC.  Up till 2018, Rail and Greyhound Canada serviced our intercity needs.  Transportation for people and goods with costly inaccessible routes between PR and PG and PG to the nation to the east along 2 routes globally.  Prior to 2006 I think, BC Rail went to Vancouver for passenger service and North past my home town.  Also prior to 2006 in Northern BC we were a lot healthier overall, public intercity accessibility wasn't an issue for so many as no one travels to those communities with disabilities. They all had private rides out of those communities for diagnoses, and often treatment aging and eventually settled where they could find housing for their disabling conditions closer to the community housing their individual treatment.  This saves travel costs and time.  Some blessing.  We're the healthiest province in the nation and 3rd Healthiest on the globe.  Woot.  That means the rest of the globe is a lot sicker than the worst ones here. Whoohoo.  Access for all is being recognized all over BC, barrier free design denies no one and helps so many.  Canada is beginning to think so, down to individuals like you who hopefully has realized before you need it.

Civic accessibility is but one part of it.  Communities all over BC are trying to become inclusive and barrier free, however standards for intercity transportation need to be improved all across the nation. That is the responsibility of Transport Canada.  As I imagine they would all be connected with each provincial entity and civic resources within our individual local government agendas.  It includes a definition of independent inclusive and barrier free travel across Canada between the communities, by commercial and private vehicles and the transportation of people, goods & services.  It is amplified by Provincial regulations and Municipal government communities concerning safety and recommendations for improvements within the areas of responsibility.

How has it improved in Northern BC? The change began when Greyhound pulled their lines from Western Canada due to low ridership.  For years, they reduced their services in Northern BC.  They appeared to ignore the Canadian mandate to become inclusive and accessible and physically denied many persons needing travel, with every ride they made.  Some are of the mind they actually caused some of the Highway 16 mysteries along that "Highway of Tears" sensation, indirectly. Their denial of a safe passage between the communities that not everyone can use and that cost.  Not real affordable for most, particularly the ones that needed it most who disappeared.  Meh.  Compassion goes a long way to protect fragile individuals, allow low income persons with afflictions the freedom of intercity transportation with everyone.  People in other areas who had missing people may be like minded but those of us reading got by in our own special way or died, trying to disappear for a shorter time from home life.  The closure of the service left other transportation services to take up and slowly evolve to those standards.  New services across Northern BC since 2017 among the rest of Canada West provide services for some, but so far not complete to connect to the rest of the provinces inclusively within their provincial boundaries.  I personally ran into a few "MSed up" people in that life of hitchhiking. It brought me to PG several times, in my youth.  My personal vision in that National "Transit Future" it would be connecting every community in Canada via inclusive community transits going inter-community between larger centres, connecting that to inter provincial transits on communities closer to the borders separating.  National lines, done in multiple short jumps.  It can only evolve to cover "Turtle Island" aka North America as lines in the US and lines in Canada run close too and through little parts of both our nations now.  But that is in the future.

Today, early springtime  2019 in Northern BC, MS Life is focused on the MS Walks in our region.  This year we are one step closer to stepping on the cure and last year we found out we  (*That's you too-Start here* use this link to look at "FlipGive", a way to get and give at the same time- PG Walk has a Team and I'll report how it's doing in further posts or as a widget below the countdown!!) could be citizen scientists actively working towards finding that cure, in part because of your funds contributed to the MS Walk in our collective community nationally.  Researchers and their studies I've met and looked at  are funded in part by MS Society funds.  Read on here to focus on Northern BC as we see it primarily from Prince George's walk.  Look on top of the page to see the number of days and hours in real time to our local walk (perhaps in your Canadian Community too), it will be updated to the new day in May 2020, shortly after the event in 2019).






Monday, February 18, 2019

You can do so much!

Your normal First Reactions, after the shock of diagnoses

So you're diagnosed, and paid employment is secure.  You have questions I bet, somewhere back in your mind.  I think they are similar to these I had when I was diagnosed at that time.  "How long will I work?"  "How will this disease affect me while I work?"  "What will I do if I no longer work?"  "Can I now use Cannabis?"  All answers will come to the same conclusion and I'll save you the time of doing the life study.  The answer is "when you feel like it", and in the case of Cannabis, "if you want to".  It's legal now in Canada, even recreationally.  My question back then once I discovered it worked for helping me quit tobacco and managing my mental health was "where to find it in an illegal world", but I won't get into that here.

A few years into diagnoses

Your first reaction when you realize your job can no longer be adapted to your changing abilities is likely not healthy.  When you finally "retire at a young age"  without the kind of money you should have to retire that young, most without fore-site or not reading this post will sit back, think they are now useless and perhaps sink into a black hole of depression hard to get out of.  Many with life partners separate now, small wounds get opened up and marriages crumble or get difficult during this part.  No worries.  It will get better or die trying for the best.  It does not have to happen in quite this way, what if it didn't have to die?  What if those thoughts never came up?  In my headwas "What to do now?  Who to ask?  Where do I go for help?  Mental help is so limited in BC, even back then!  I had so many questions about MS and my future!"  Luckily you likely live in Canada, diagnosed since 2010 and are registered with the MS Society of Canada in your local area.  They have a Peer Support service available at https://mssociety.ca/support-services/ms-knowledge-network and by phone at 1-844-859-6789.  That was not available to me back then.  They do so much good now.  I just saved you years of life experience, have your life partner thank me and the Society as well.  I am writing this on Valentine's day 2019 :) Share the love.   I'll put a couple of links below too where you can positively influence the province of BC or your like minded Canadian Community as a whole, Volunteering  with medical care for all people with health care concerns in your health authority and province.  It is but one option to lift your moods.  Volunteering anywhere is one way to lift depression and promote  feelings of worthiness  Another is to get an activity you enjoy.  Walking is one.  Smiling at strangers is another.  Join a swim club, Aquafit is available in many community pools.  A club offering therapeutic horseback riding may be available too.  Let's get into volunteerism actions you can do to feel better.  Or save that for a later date.  I know you mean to get back to reading this, leave it open and come back to it.  Or go for that walk.  If you go for a nature walk or roll, it's considered affordable mental health therapy.

My biggest hats

Online

In my MS'ed up life I have many roles connected to many volunteer groups.  Online, check out and follow me on the Huddol network.  Register with the website behind the link.  I'm "bcbud024".  You can become a valuable contributor earning tokens (money) in a variety of ways explained better onsite.  In my "professional" life I am a student of life and webdesign.  I have designed a couple of websites, thanks to the education i received through IBDE and Make A Change Canada's influence with the Business Abilities course.  They are the Carefree society's website and my own.  Through my own, I manage the updates on Volunteer Prince George's website and if it ever needs a redesign, I do stand ready and able thanks to aforementioned courses which included WordPress training:)  I also manage a couple of Facebook pages for Cannabis, The MS Community of Prince George FB Group (and our international connections in a FB page) and our local MS Walk.  Some of my online duties stem from boards I sit on.  It is another way of feeling useful.

Advisory and working Boards, committees and projects

Multiple Sclerosis

My very biggest claim to fame is my connection to you, the MS Community first in Prince George BC Canada, then to our Global MS connections in Research and the community of MS affected persons.  I have done that since 2005.  I have sat as Facilitator, or your Representative of Prince George to the MS Society of Canada, overall nationally.  We saw this community held together through the loss of a local well established MS Society of Canada, BC Division Chapter office as we transitioned to the newer Northern Regional Chapter Office now located in Kamloops BC, with connections in every community with an MS Self Help group within their responsibility up to Whitehorse, YT to act as Volunteer Liaisons between the groups and the society.  It was a very familiar model, one we had while the chapter was local.  Actually the model we had here was unique and is now followed across the BC Division of the MS Society of Canada   MS affects a community which builds on a bridge of inclusiveness of all affected by the condition of MS & other diseases and conditions that MS lives with.

The Carefree Transportation Society

The Carefree Transportation society has been in operation since 1971.  They pioneered Accessible Public Transportation in British Columbia.  Many improvements in BC Transit's accessible and inclusive design including the development of the HandyDART door to door transportation fleets for those who cannot use the pubic system for any reason started out with the ideas and objectives of the early society.  Carefree was also one of the founders of the Accessible Transit Action Committee (ATAC) along with officials of BC Transit in Prince George (PG Transit) Pacific Western Transportation and PG Taxi.  I am treasurer for the Carefree Society  as well as their Web Designer and past chair of ATAC.  Carefree also manages the Taxi Saver program in Prince George, those are used to pay for trips with PG Taxi and covers the fare for persons with a disability.  A person buys a $40.00 sheet of tickets worth $80.00 of rides.  They are to be used only outside of HandyDART's regular hours for travel around the city only.

The Patent Voices Network

In the mid 2000's around 2006/07 The Patient Voices Network (PVN) came to Northern British Columbia to Northern Health.  The movement had actually began a few years earlier, introducing the health authorities of BC to an early model of "Patient Engagement".  Our first slogan was "every one is a patent".  We adapted another slogan, "Nothing about me without me"   Wasn't much longer and one of the supporting societies, "Impact BC" provided an umbrella for PVN to grow.   Towards 2015 Impact BC changed focus and PVN began the quest to find a new supporting Partner.   We had thought about one, but their goals were slightly different then the mandates PVN developed over the years since it was formed and we wandered about the province doing "PVN engagements"  with health authorities throughout the province.  The BC Patent Safety and Quality Council (BCPSQC) was formed about 2009 and became PVN's supporting partner by 2015.  BCPSQC had partnered with several Canadian Provincial Health Authorities that were adapting the Patent Engagement Strategies.  In BC our new partnership with BCPSQC  had brought the BC SUPPORT Unit to engage patient oriented research with regional SUPPORT units in every health authority.  They soon joined national PVN Members to SUPPORT units in most of the provinces, with partnerships with the "Strategy for Patient-Oriented Research" (SPOR)  and The British Columbia Academic Health Science Network (BCAHSN).  We've got the healthiest province in the country and 3rd best globally.  Patent Voices played a huge part in making BC that way with patent involvement at all areas of Health Care management.  I am a BC SUPPORT Unit member on the Patient Council and an "Activated Patent"  of PVN.

Handy Circle Resources Society

The Handy Circle Resources Society started out in the mid 1990's as the Handy Circle Promotions Society and became active in the accessibility of Prince George. Founded by Vivian Candy, she was an outspoken advocate for accessible public areas like sidewalks and trails.  Vivian had lost the use of her legs due to Diabetes which took her life by 2009.  She hired Mrs Lorraine Young as Office manager around 1995.  HCRS is a resource center for people with a disability.  Lorraine is still the office manager. I began volunteering there about 2005 and was hired sometime between 2012-2014.  I do some computer maintenance and instruction as well as networking with various organizations like the City of Prince George Advisory Committee on Accessibility,  the MS Society of Canada (Prince George Chapter when we had one), The Prince George Mental Health Consumer Council and various media outlets.  I am the Emcee for many of their public events.

You don't have to be as active as me but...

I am so busy because of my mental health.  You might not be as crazy as I seem, I certainly hope not anyway.  When I was diagnosed with Multiple Scleroses in 2000 and "retired" early in April 2002, I went kind of crazy.  Thanks to a former venue to treat Mental Health in Adults I took a workshop on Assertiveness which gave me the tools to take charge of my life, end a 35 year addiction to Tobacco at 39, and proved to me that in order to remain sane, I would need to do something and I began to donate my time to various organizations.  I encourage you to do what makes you happy.  If get frustrated looking for gainful employment then offer to volunteer someplace.  Most people find that rewarding, and that's just therapeutic in its own way.  You could even volunteer with the MS Walk in your community!  That's coming fast here in Prince George, the banner on top of this page counts down to the event happening at Lheidli T'enneh Memorial Park on 17th Ave in Prince George.  If you are a Prince George resident living with MS I encourage you to join the Self Help group's team (the "Self Helpers") or form one of your own from anywhere in Canada.  You may donate to our team too from that link.  A Self Help Group team's earnings have 10% returned to the community unrestricted for their use.  Thank you in advance and we'll see you there!

Sunday, January 20, 2019

What is the hype about Gut Bacteria?

So much research focused on our guts...

Have you noticed that there has been a lot of research lately about the stuff in your tummy?  They are on We've done our own research through our lives.  We all learned in school about how the stomach aids in digesting food our experiences tell us what makes us well, what makes us sick and what we don't like to eat. We know how some foods make us happy, some have other moods associated with them and some foods cause real problems as many have allergies to it.  Commercially processed food and pesticides, all that food hype!  It's not specifically all about Multiple Sclerosis, all of humanity is affected by what goes on in the gut, even since before we were born.

How does the Gut affect humans?



Overall it has been said that the gut is another brain.  We all have a gut working hard the same way using that bacteria as it has all your life all through the history of humans.  What you eat can really affect your mood, and if you starve yourself, it weakens you sometimes to become immobile.  Same if you eat food that your body rejects or is infected with competing bacteria.  McDonald's anyone?  Generally any fast food has its problems for many sensitive people.  Reactions, silent allergies that develop into chronic illness can all be attributed to changes to the Microbiome (another term for the collective bacteria your stomach holds).  One of the diseases (and the the one I'll focus on, inspired in part by Dr Kim Lee) is Multiple Sclerosis.  It is highly affected by the gut...

From pre-birth to post-death, your gut is actively working.

Your individual collection of Gut Microbiome were given to you from your birth mother and all the diverse genetic line of women before we were who we appear to be today.  It is unique, just like the body it inhabits.  It can be influenced more by what you eat than the environment you live in.  Upon birth, your entire body is new.  Before birth, the bacteria grows and develops individual reactions from the ingestion of nutrients derived from the mother.  The microbes prepare the infant for the world they will arrive in approx 9mo from the spark of life.  All through the life it influences emotions, health outcomes and energy levels and more including mental health.  It continues after death to help the body decompose

There is a similar disease that brews completely from our Guts

Up to about 15 years ago as of 2019, a few diseases were misdiagnosed as Multiple Sclerosis.  Most commonly, it was Lyme Disease which manifests in similar fashion.  For confirmed cases of Multiple Sclerosis, some MS Flareups could be attributed to artificial sweeteners and tobacco use,  Coincidentally, those do change the structure of the Gut Microbiome in a negative way.    Helicobacter pylori (Hp) Hp Sydney Strain-1 antigen is a disease very similar to Multiple Sclerosis born in your guts.  Some of us have both or even just Hp misdiagnosed. If you are new to this disease, or even if you are a "Vet" (more than 5 years of diagnosed life) and you have questions about your diagnoses, talk to your MS Specialist about that. It could be possible it was overlooked to test for it.  Who knows.  You may be "Cured" of MS before death.  I'll leave you with a question:  Does Cannabis affect our Gut Bacteria?  Perhaps a subject for a new post perhaps on Walknroll.info


Thank you for reading about our guts

And in the end, it all gets flushed out with oils and toxins.  There is a saying about your personal plumbing system.  Just like your house, it can get backed up or have other issues voiding waste.  This sometimes can be attributed to changes in that Gut Bacteria.  Some of it is in the Lower Intestine where the Bowel voids solid waste aka Feces. For more information on Gut Bacteria. Multiple Sclerosis, misdiagnosed conditions etc, the MS Society of your nation (in Canada, the MS Society of Canada) will have accredited information they give free of charge. In addition always maintain a good relationship with at least one accredited medical professional that knows your disease and you.  If you would like to help change the path of Health Care in your Canadian health region there are links to provincial Patent Engagement teams found via the BC Patient Voices Network on their website and connected partner sites like the BC SUPPORT Unit on theirs.  At the SUPPORT Unit in your Canadian province you could even become a "Citizen Scientist".  How cool would that be?

Support more research on the Gut

To help fund more research on the Gut and other subjects leading to MS and it's effects, as well as supporting those of us living with the Disease nationally, consider a donation to our MS Walk in Prince George through our Self Help Group's Walk Team. (link will come active closer to the date where our top banner says the walk is happening soon, about 150 days before I think.  All other links should work). 10] of the money donated through our team stays in Prince George to be used for our local community.  For news about the MS Walk and other events in your community, refer to the MS Society of Canada's website and locate your area of support.


Wednesday, January 9, 2019

How do you handle negitive stress?

The science of Stress:

We have ample knowledge of what negative stress (NS) does to us.  Well, those of us who live with MS for more or less than than half a decade are aware of it.  In 2018, Researchers finally proved what we knew.  Awesome.  But what good is knowledge and facts without knowing how to avoid NS?  Do we just sit at home and avoid it?  Is that even a good idea?  Experts such as health authorities say "No" very loudly.

What is Stress?

Stress is your body's way of responding to any kind of demand. It can be caused by both good and bad experiences. When people feel stressed by something going on around them, their bodies react by releasing chemicals into the blood.  There is positive stress.  That gets infants from crawling to walking.  Learning new ways to overcome barriers.  Improvements in life.  Success in goals affecting lives including your own and family.  Those affect our disease in positive ways.  Negative stressors like arguments, angry thoughts, actions, pain are the things that do damage to those of us in all autoimmune diseases.

How to reduce stress in your life

This post would be useless without telling you how to avoid that stress.  Fact is though, you can never avoid negative stress.  You can only change it to positive stress.  But how do you do that?  There are many ways to learn "Stress Management".  The most basic way is to recognize internal negative thoughts and change them to reflect positive.  One way to do this is to force your face into the shape of a smile and hold it 10 seconds.  Try it now.  I'll count for you.  10----9----8----7----6----5----4----3----2----1.  Breath in slowly and deep, exhale just as slow.  How do you feel now?  Try it as soon as you open your eyes. This is known as the "10 second smile" exercise.  I guarantee your day will go better when you start in a good mood.  Go for a walk, but be prepared for the weather and environment you walk in.  You could even try yoga.  There is some poses for chair bound individuals and is so simple to do at home with no real expensive training or specialized equipment.  Some other activities are listed below the video posted

Mindfulness to relieve negative stress

This is a powerful way of calming your thoughts to reduce NS   Simply put, it involves sitting or lying in a quiet comfortable space, closing your eyes, breathing deeply and steadily not too fast and not thinking of anything except sensations in your body occurring during the exercise.  Be aware of your body and try to block harsh sounds distracting thoughts and interruptions.  There are free courses offered in this exercise, I will encourage you to learn and practice it often.  if you live in the region covered by the Northern Regional Chapter of the MS Society of Canada, (much of British Columbia outside the Lower mainland east of Victoria but includes Haida Gwaii and the Yukon Territory) there is a "Regional Self Help Support Group" that meets electronically or by telephone on the 4th Friday of each month.  Contact the Chapter to learn more.  Sign up for their "Messenger" newsletter sent out once a month to be aware of all MS activities affecting our MS'ed up part of the world.  We live here with a huge percent of Canada's large MS population.  The Northern Regional Support meetings are facilitated by an instructor in Mindfulness.  We also have a very active Self Help group in Prince George, as do many communities throughout the region and caregivers are as welcome as people diagnosed with Multiple Sclerosis, just like the face to face groups in our communities

Social activity to combat stress

Social activity is great to combat negative stress.  If your community has no "live" self help group, perhaps you can start one.  For a number of years, I facilitated a group of one here.  If you would rather, join a walk group at a local mall or park or just call a buddy and set up a walk.  Find new friends on a  public transit bus. Almost all communities have some very diverse social groups and activities, many are free and all are welcome.  You will enjoy yourself if you let yourself feel free.  Accept that some NS must be ongoing, particularly grief.  It helps keep memories alive and knowledge that death is only hard on the surviving contacts.  Truly enjoy life and smile lots to overcome NS, even if grief.  Practice that "10 second smile" (described above) now.

Ending stress and this post

Simply said, Stress will never end.  This post must though.  Practice changing it all to Positive Stress.  Smile at strangers, it is incredibly therapeutic and self empowering when they smile back.  Start each day with a smile.  Laugh more often.  Praise, don't criticize.  Practice good hygiene and always find the silver lining to every situation, take value in experiences good or bad.  Try to relax at all times, and live well.  Till next post, practice smiling!

Did you enjoy this post about Stress?


Consider donating to the Prince George MS Walk through our Self Help Group's "Walk Team".  You may join there and help us inspire your contacts by raising money collectively, or simply donate to a member of the team securely with all our thanks.  10% of that donation and other monies collected by the team gets returned to the Prince George Multiple Sclerosis Self Help Group to share through the community unrestricted from MS Society restrictions and obligations.

Inquisitive mind, a Thanksgiving post

 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 ...