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!
