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

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

Voices. In my head and in front of you

I started this blog back in 2010.  As of the last post I posted, just a few days ago and never really shared anywhere but everywhere in the mainstream of people who may be looking in on me from many public talks I have given,  2 eyes have seen it.   Thank you for looking in.  I hope at the very least you'll see this one.  My writing was used during my rebellious teen years living in a functionally dysfunctional family and that continued to the first few years with this condition but life post-MS and mental health treatments took some of that skill as well as my confidence as I took care of myself.  Years ago, the MS society helped me with a membership to Toastmasters.  A particular chapter of that international organization is still is connected somewhere back along my personal timeline.  I managed a blog for them in my past.  That was around the start of this blog as I began to work on my technical Blogging skills.  I have always thought that a good speaker is a good writer, and I have been told I am a great speaker and my writing at times has impressed, inspired and directed.  The MS Society was willing to continue paying my membership to Toastmasters but I refused.  The limited times I spoke there, once or twice it came back and I realized my voice again in sporadic passionate speeches themed towards that I confidently have knowledge of.  It's not good at all times but when I need it, it's powerful and strong.

My voice training had occurred in my youth.  Around 15, I joined up with a new chapter of a Royal Canadain Sea Cadet Corps that began in Ft St James in around 1981 and died around 1992.   By 1983 I was a Senior Cadet in charge of a Division of 20 or more cadets and in 1984, I aged out and often led a group of 40 or more cadets on and in Parades and at Sea a couple of times on a ship, my position was a "Sea Training Officer" long before there was standardised training for it.  In around 1989 I left that Sea Cadet Corps and drifted to Alberta where I had limited exposure as a civilian volunteer with the Army Cadets there and then through Vanderhoof with Air Cadets to Prince George with Sea and Navy League Cadets till my mental health made me leave after 22 years.   My writing left after the Mental Health sessions were completed in 2005 when I became "sane" and quit tobacco use in August.
 
Why would I need to have voice training that would take money from our MS community in my adulthood?  By 2005 I had found my place as the facilitator of the Self Help group in a then chaptered city.  It caused me more internal conflict and a little more of my voice left with the stolen confidence.  I began Emceeing for the Handy Circle Resources Society around that time, by 2015 I was Emceeing all their events and CANDO.  I had been on local TV as well, interviewed a couple of times for accessibility stuff while I sat on the Advisory Committee for Accessibility.  I have spoken on a couple of radio interviews as well for CFIS 99.3 Fm doing business as the Prince George Power Mobility Society.  All that happened after 2010, it's 2017 as I type.  It's weird when I think of it.  My confidence returns when I stand in front of an audience, 99% of the time.  I have Emceed at many events, as a volunteer most of the time.  The first couple of times I messed up but have been complimented lots.  I am often medicated on THC and CBD when in front but that's to deal with the pain of standing,  a constant deterrent to my confidence.  All my speaking I have done, with the exception of Cadets, has been inside.  My next public speaking engagement will be a milestone moment in my career of public speaking.  I was approached by a contact of mine, who first saw me as a Cadet leader and was impressed.

I had spoken at her home business and wellness shows a few times and she attended many of the events I emceed for Handy Circle.  I was Emceeing at the CANDO 2018 event at Prince George's accessible Civic Centre in early May.  I used my voice well, billing the Volunteer time to my MS community.  My contact approached me just after the event ended and invited me to Emcee her new event to be held on June 3rd, 2018.  I contacted her 2 weeks ago to confirm.  Sure enough, I will be speaking at Lheidli T'enneh Memorial Park on June 3rd from shortly before 10am. This will be inspiring for me as I am building a business plan with help from Make A Change Canada through their Business Abilities course.  I am a very recent graduate of their "Internet Development for Entrepreneurs" (IBDE) course.  Yes, I do websites and WordPress setup and management as well as Public Speaking.  Check out my business goals here behind this link!.  That website will be hosting my client's questions about SEO and other design options and problems that arise

MS Awareness month 2018 in Prince George

Whola cow, what a year this year.  Our Facebook Group page has grown fast, with 31 members as I type so far and gathering MS'ers around the city.  Tomorrow, the MS Walk will happen in Prince George on May 27th, 2018, you still have time to register!  Several members of the Prince George community were involved in the planning and event preparation.  It was very cool to see the energy a group of MS Affected individuals can do collectively that will be displayed on May 27th, 2018.  To cap off that evening, Mr. PG which is located at the crossroads of British Columbia Canada, will be lit in Red starting that evening till the 31st.  This will be for a couple of reasons.  One, it will be symbolic to the world that passes and the contacts who will see the pictures they post.  They will know the unique relationship that exists in Northern BC Life with MS.  We have a "partnership" of sorts between the medical support at Northern Health's MS Clinic at UHNBC (toll free number 1-888-967-6774), through the individual communities where MS lives in Northern BC and the Yukon.  They are connected to the MS Society of Canada's Northern Regional Chapter which is connected to the same communities.  Those two sides are symbiotic with the collective community of affected persons in those communities connected through this connection, which includes staff and volunteers of the society and the clinic in those respective Northern communities where they live and work.  It can be represented as a triangle of support.  We all know our places in the Global community and that is one aim of Mr. PG's color display as May 30th is World MS day! Another aim of the lightup is to commemorate the end of Canadain MS Awareness month 2018 in Prince George.

My MS treatment.

When I was first diagnosed with Multiple Sclerosis in June of 2000 I was introduced to the MS Clinic of the (formerly known as) Prince George Regional Hospital and the Multiple Sclerosis Society of Canada, Prince George Chapter.

I have never really felt OK around any medical professionals so my contact with the clinic was limited. At first, I also avoided the MS Society as I was not comfortable with them or the disease I now had. The clinic advised me that Interferon's were needed at the early stage of the disease to prevent slipping into Secondary Progressive MS. She explained the "ABCR's" of MS Medication (Avonex, Betaseron, Copaxone and Rebif) which will be explained in a later blog. All are administered sub-dermal via injection (Daily, weekly or 3 times a week). She wanted me on Avonex.

The Nurse gave me an exam to measure my depression level. This was in the late winter or early spring of 2001. That is a standard operating procedure with those MS treatments, patients are often given anti depression medication for a few months prior to being prescribed that form of treatment to counterattack the "rare" side effect of depression that can occur with Interferon. My mental levels were very low and she suggested the Adult Mental health center attached to PGRH as well as the Antidepressant medication would be required before I could consider that treatment.

I began with Avonex in July of 2001. Even with the Anti Depression medication and the therapy of the Adult Mental Health clinic I was a mental wreck by the time my birthday came around in October. I became "needle phobic" and I refused to "stick myself" anymore. The MS Nurse at the time suggested that I try Copaxone instead of Avonex. I saw the needle, panicked and refused that treatment as well. It has an auto inject option but that did no good once I saw the needle. This kind of ended the pharmaceutical treatment for my MS and broke my limited connection to the MS Clinic for a few years.

I began self medicating with Marijuana in 2002 which helped with a lot of everything that MS was tossing my way, including the depression. I had used Marijuana extensively in my youth but had left it well over 15 years behind my present life. It helped ease the depression and the stiffness. Vertigo was practically eliminated and I could sleep. It was illegal and for some reason I wanted to feel like an outlaw, in my mailbox I found that the MS Clinic of the day did not support this move. It made the disease tolerable for me. I will post anther on "Medical Marihuana" which I began with the doctors & clinic's blessing in 2010.

MS the early days

Persons diagnosed with any chronic illness go through various stages of mental anguish. The first part (pre-diagnoses or "limbo")after the first noticeable attack of the condition brings feelings of being anxious about what it could be. When the Diagnoses is finally presented to the patient, the person goes through feelings of relief at being able to put a name to the effects of the body. A short time later, depression can set in as the realization that this condition exists in you and the future is cloudy. If support venues exist (Self Help groups, Family, Friends,etc) the transition is short and depression turns to acceptance fairly quickly and patients learn to "adapt and survive".

1999 was a very strange year for me. I think it was a force stronger then me that kept me alive, I was on a path of self destruction. The hours at my place of employment were cut back, my boss and I were constantly discussing my health and mental state. Thanks to the Internet I was finding out the MS would not kill me and that was upsetting. I did not know anyone locally with MS and I felt very alone. In 2002 I left the high stress environment I was employed by and became addicted to the Internet while I had a home to live in.

I found a website at "webmd.com". It has an MS support group there that was totally what I needed at the time. I found persons there who understood everything I was talking about, even if I did not know anything about what I was asking... They were from all over the world, mostly from the United States. It struck me hard with the realization that MS Must live elsewhere in Prince George, I just had to find it. Those people I met at WebMD are still my friends and personal contacts albeit we have never met face to face.

My Employer and I agreed to disagree and after several months of 2 to 3 days a week employment (during which I did the leg work towards Disability) I left work in April of 2002. In August of the same year I became homeless with a disability. During all of this (from around January of 2002) I began consultation at the Adult Mental Health Center here in Prince George for severe long term depression. I was living on the living room floor of an old friend of mine and my life was unsettled. We moved to a larger house and I lived in the basement. The therapy went on for about 2 years, my depression was long term and amplified by recent events.

It was over a year later when my disability pay kicked in from the Canada Pension Plan (CPP). In February of 2003 I had moved out of the basement bedroom my friend had let me crash in over the winter and started to reside in the homeless shelter downtown run by Active Support Against Poverty. They have permanent accessible housing above the shelter and I took a place up there for awhile. I survived by communicating with my peers online and discovering the others in Prince George with MS.

Prelude to MS/Depression awareness

How does one live with Multiple Sclerosis? I did not always have this condition. Once I was an aspiring forester doing everything from 3 meter knockdown, slashing, thinning, road, cut block layout, Bug Kill (Mountain Pine Beetle "crash and burn" project) and Forest Firefighting. This was all done in the Ft st James Forest district (BCFS-FD5) in the 1980's. At the same time I was part of the Canadian Armed Force (Reserves- Cadet Instructor Cadre). I temporary moved to Lac La Biche, Alberta in 1987-88 where I attended Forestry school in the Alberta Vocational Center there.

I could feel myself growing older and decided to take life a bit slower starting in the early 90's. I took a job in a gas station in Vanderhoof BC in the mid 90's and held it for a few years. I also became common law married while employed there.

I moved to Prince George BC in 1995 and began working in London Drugs as a computer technician in 1997. In 1998, my common law wife decided the grass was greener without me and put most of my belongings on the curb. It was raining and vertigo (*extreme bouts of dizziness)was running my life. I quickly found another place to live, rain and me did not get along. Sleep took care of the vertigo. About a week later my I woke up and walked into a wall. I discovered that I could not see out of one of my eyes.

In a Panic I raced down to the eye doctor just down the block. He could find nothing wrong so he sent me to a specialist. After Hmmming and Humming for about 20 minutes she informed me I had no medical insurance. She also told me about the ramifications of being without medical insurance in the province of British Columbia while she handed me a bill for $189.98 for her 20 minute exam. The exam was "inconclusive".

I do not remember if she called it Optic Neuritis (ON) which would not have meant anything to me if she had. I know know that ON is a symptom of Multiple Sclerosis. In fact, up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time, optic neuritis is the presenting sign of MS.

After obtaining BC Medical Services Plan coverage, I consulted a few specialists and my GP who all shrugged their shoulders and "blamed the other guy". I finally connected with a Neurologist who scheduled me into an MRI (Magnetic Resonance Imaging). In Prince George prior to 2005 we were served MRI's in a mobile unit which traveled Northern Health's vast area to get everyone who needed one tested. A person normally waited 9 months for the exam. I was 5 minutes late for it and had to reschedule.

In February of 2000 my father took ill and was constantly transported to the Prince George Regional Hospital from Fort St James. He did not have long to live. In June of 2000 I managed to see the Neurologist again who disclosed that I had all the markers for Multiple Sclerosis and that would be a label I would wear for (*Possibly) the rest of my life. I thanked him and walked out. In July my dad passed away and I felt alone and helpless. I still had a job to do, a life to live, an Ex wife to hide from as depression filled my world.