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

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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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!