Helping Out with COVID-19

Thank you Carolyn!

I just moved to Toronto 10 days ago from California. The reason was largely due to the fact that I have chronic health conditions, including a primary immune deficiency. Our lovely, healthy, off-the-grid desert oasis town, had only had one doctor with a 1-1/2hr mainly back road drive to the next doctor or medical facility.

COVID-19 was not too much of an issue only 10 days ago. Now, the town is having to figure out how the little medical clinic and one doctor can serve the community.

As a person with an immune deficiency I had become a member of the IDF, the Immune Deficiency Foundation. shortly after being diagnosed. I was clueless and feeling the need for peer support. That's what they do.

The IDF has been a fantastic resource providing literature, peer mentors, and lists of local medical professionals who have signed up with them as specialists in immune deficiency. I found my wonderful immunologist through them.

The IDF has a very sophisticated network of peer volunteers who run in-person groups and provide peer support, mentoring, and counselling by phone. My support volunteer would pick me up at the airport and accompany me to my appointments with my specialists.

I have not yet reached out to them for a Canadian connection, and will let you know what is available.

In the meantime, here is a link to a great video from March 10th about COVID-19 to share:

https://youtu.be/3DUKPXgYaYc

Kathleen Sullivan, MD, PhD is the Chief of Allergy and
Immunology at Children's Hospital of Philadelphia and a member of the IDF
Physician Advisory Committee. She put together a video update with
some helpful information about COVID-19. The information is divided into
five sections. Those sections include:

An update (as of March 10,

What is the testing?
Is there lifelong immunity?
What are the risks to
patients with PI?
Is immunoglobulin
protective?

Useful links at the end, especially Henry the Hand--to learn how to not touch your face

...Susan Katz

Thanks Carolyn -- here is the Ontario gov't site... it contains a lot of information, and much of it is not germane to most people, but it is updated twice daily for those who need to know that frequently.

The links you provide are helpful... especially André Picard's pieces.

I made a recommendation to HQO for Ontario Health to set up an interactive FAQ website for just patient-focused information ...where we could ask questions and get public answers back -- so we'll see what emerges.

I also recommended a dedicated corona phone line to take the pressure off Tele-Health and the 911 lines (which is being reported) -- or expanding the Tele-Health capacity. Again, we'll wait to see what might be done for ordinary patients, families, and the general public.

I am not alone in finding that getting out and walking, especially on routes not normally taken, is not only good exercise and gets us out of the house into a safe social distance setting but provides variety. If fortunate to be walking with someone else 0n trails walking in line 2M apart still enables conversation. Rather than adjourn to a coffee shop at the end of the walk take a thermos full and find a good spot to drink coffee and talk.

Sent from Mail for Windows 10

I am in the most vulnerable group regarding COVID-19 (senior living with Diabetes Type1 for coming on 50 years). A member of my family recently travelled to England on business and is now showing the symptoms and is in quarantine like John Tory and Trudeau's wife.

My son a cardiologist begged me to not go to the Diabetic Management Centre today even though I have lost weight and needed modifications to diabetic protocol. In addition access to funding for my diabetic supplies is dependent upon regular appointments of this nature. I was able to download information from my insulin pump into the computer and send it to my health care provider. We then carried out suggested changes on the phone as she walked me through needed adjustments. It mean a lot to me to have a way to be able to have a meaningful appointment that brought about recommended changes to my healthcare routine and not have to leave my home.

Sorry to be late in the game but we have been in a flurry of dealing with family changes due to the CORONA-19. We have decided to self isolate as we are in that age group and not in the most robust health. Having said that, we did go out for a wonderful walk in the sun. It's time for the simple pleasures in life.

Thanks goodness my pregnant daughter-in-law has returned from her job in Africa on Fri and my other son and his family canned their planned trip south for March break. Wow! Such changes!

Now my biggest challenge is how to carry on in a reasonable fashion, how to have family times but virtually, how to change focus to some of the work we patient partners do so when we come up for air, we can move ahead. I would love to hear how others are managing and what parts of the patient partner work remains important and can move ahead.

Thanks to you all for posting helpful sites. I follow André Picard daily and the CBC has a special site that is updated regularly https://www.cbc.ca/news/canada/coronavirus-march-16-covid19-canada-world-1.5498835

There are also good resources for caregivers of those with the virus. I'll post those as I find them.

MUST READ from André Picard, Sunday March 15

https://www.theglobeandmail.com/canada/article-canada-heres-how-we-are-going-to-survive-this-pandemic-together/?

"Look for the helpers" - In these scary, pandemic times, we could all use a little Mr. Rogers-like re-assurance

Hi All,

I received this wonderful list of resources from my local North Toronto Fibromyalgia Group. We're not going to meet in person next week, so here are some resources that have been shared:

The
Workwell Foundation has a webinar about Post-Exertional Malaise
scheduled for Tuesday March 24th at 2 pm ET. The link for this is

https://zoom.us/webinar/register/WN_zqHqLg6eRrGwqP20gzUnUw

Post-exertional
malaise is a key component of ME. We may be able to perform some
activities, but we are practically guaranteed to feel the effects later.
We thank Action CIND for bringing this webinar to our attention.

Action
CIND has also invited us to participate in monthly online chats, which
are currently scheduled the first Wednesday afternoon of each month from
4-6 pm EST. The next chat is scheduled Wednesday April 1, 2020. The URL
in the poster for this chat is

https://zoom.us/j/4602549669

The poster for the Online Zoomers chats can be found at

https://mcusercontent.com/ec4094030612e02da03957013/images/0ebedf1d-e3d0-4c5a-b77e-6d6a3fd89afd.png

If you are a member of Facebook, you may be interested in joining one or
more of the groups that provide support and/or information for people
with our chronic illnesses. In particular, the GTA ME-FM-MCS Support
group is a closed (private) group for people with these illnesses who
live in the Greater Toronto Area. If you are interested, please sign in
to Facebook, search for the group name, click that you want to join,
then answer the questions for the benefit of our administrators.

Social Distancing info:

https://content.oma.org/wp-content/uploads/Guidelines-Social-Distancing-OMA.pdf

How to self-isolate:

https://www.publichealthontario.ca/-/media/documents/ncov/factsheet-covid-19-guide-isolation-caregivers.pdf?la=en

COVID-19 info:

https://www.ontario.ca/page/2019-novel-coronavirus

COVID-19 self assessment tool:

https://www.ontario.ca/page/2019-novel-coronavirus-covid-19-self-assessment

Take Care,

...Susan

Thanks Carolyn,

Here is another resource that the Community Education Service_Alberta Health Services has shared:

COVIBOOK for Kids: Designed for children 7 and under. Access in 16 languages through this link: https://ces.hmhc.ca/?mailpoet_router&endpoint=view_in_browser&action=view&data=WzcyLCI2YTU3MWQwMTdkMTkiLDY1MTEwLCJoM2JhNWp3MXJ4c3NjNHdjc2c4Y2NzOG9vd3NvY3NzZyIsNjAsMF0

Hi Folks,

The following are more links specifically for people with
ME/CFS--Myalgic Encephalomyelitis (formerly called Chronic Fatigue
Syndrome) which is often caused by, or exacerbated by, an immune system
that is deficient against viruses.

This is from the #MEAction group specifically addressing our needs and COVID-19.
A resource for parents that have ME/CFS during COVID-19
A video from Dr. Nancy Klimas of The Institute for Neuro-Immune Medicine, one of our ME/CFS champions, addressing ME/CFS and COVID-19. Her expertise is with the neuro-immune basis of ME/CFS.
An article from The Guardian addressing the message that COVID-19 is relatively safe for 98% of the
population, which isn’t exactly reassuring if you fall into the other 2%.
Here's a form that someone with ME/CFS can fill out ahead of time and have handy in case they have to go to a hospital or urgent care clinic. Being able to present a form with details of what we have, and what symptoms are flaring up can make a world of difference in the quality of care. My ME/CFS doctor once sent me to the ER to be checked out during a flare up: the ER doctor there was quite dismissive of any symptoms, but did offer me a colonoscopy! Nothing like a for-profit healthcare system (this was in the USA). Bringing this form already filled out would have bolstered my intake answers.
Here's a checklist of other items to bring along, if anyone is needing emergency care.

Best regards,

...Susan

Thank you. That is good and from a reliable source. I have shared it.

(Act like you are quietly carrying the virus and do everything you can to stop spreading it to others. Dr. TheresaTam)

I sent that out and got several replies from MOST grateful parents, Children are particularly vulnerable to our obvious worries. We need more like this to help.

Hi friends,

I know that not everyone follows Twitter. Here are recommended articles to help parents (grandparents, aunties, uncles, etc) talk to kids about coronavirus. Thanks to @katebirnie, a clinical psychologist at the University of Calgary School of Medicine.

Best to all, Carolyn

"How to talk to kids about coronavirus", The Globe and Mail, (Canada) March 14 (updated)
"Answers to 7 questions your kids may have about the pandemic", The Conversation (USA), March 14
"How to talk to kids about coronavirus", The New York Times (USA), March 18 (updated)

Carolyn,

Do you mind If I clip and paste this to send out as a good suggestion for parents with children now at home for an extended period?

John

(Act like you are quietly carrying the virus and do everything you can to stop spreading it to others. Dr. TheresaTam)

Hi John, that’s the whole point here.
Please, everyone, share these resources to support your family, friends and wider networks. We’re all in this together! Strengthening our ties will help everyone feel a little less anxious and function a little better.

Best wishes to all, Carolyn

Hi John, Here is another great resource for parents and kids. Also for ALL of us who find our daily schedule is upended. See what you think and post it here.

The inspired dad here is John Spencer, an Oregon-based former middle school teacher and education specialist. Here's what he says...

Last night, we brainstormed a schedule together as a family. Half the day is free time but for 4 hours we're doing scheduled, choice-based options. Here's what we came up with. I'm sharing this recognizing that every kid and every family is different.

Check out his Twitter feed at @spencerideas.

I don't know about you, but I feel somewhat blasted by the shock of this societal upheaval. I need all the help I can get to focus on what's important and manage the noise. How about you?

Best wishes to all. Wash your hands. Stay at home. Keep connected.
We're all in this together.
Regards, Carolyn

Thank you for forwarding these valuable survival strategies. Nothing has more power and meaning than the words of someone who has walked the talk.

Hi all,

I thought I would share the information page we developed at the Canadian Arthritis Patient Alliance. I'm trying to keep it current since so much is changing all the time including with some of the medications we regularly take, like Non-Steroidal Anti-Inflammatory Drugs (NSAID's) and Hydroxychloroquine (yes, the Trump announcement).

http://arthritispatient.ca/covid-19-information-resources/

Some information is general while other information is specific to arthritis or living with chronic disease.

Hope this is helpful!

Laurie

This from an oncology nurse in the US on how the coping skills she learned as a cancer patient help with COVID 19.

https://herecomesthesun927.com/2020/03/23/a-few-covid-19-tips-from-someone-whos-had-a-lot-of-practice-living-with-uncertainty/

Putting on my Spiritual Care Chaplain chapeau now, here is a nice reference resource for navigating the existential and spiritual questions that may arise, from both adults and children:

Responding to Spiritual Questions and Emotional Needs after Tragedies

Following a terrible event or loss, these questions may arise, tempting others to
offer their own religious understanding or to engage in philosophical discussion. These
are valid questions... to be engaged at other times.

In times of deep crisis and pain, such questions – when posed by adults – might be heard
as:

“How could this have happened?”
“Does anyone care about and protect me and those whom I love?”
“What did I do to deserve this?”
“How can this terrible and unfair thing have happened?”
“Is there any order and security or is the world just chaos and

mayhem?”

When posed by children, depending upon their ages, they may be heard as:

“Why didn’t my parents/teachers/caretakers protect me?”
“Is it safe to be away from my parents?”
“Is it safe to go to sleep?”
“Are there bad guys everywhere?”
“Is the world a scarier place than I thought?”
“Is anyone in charge?”

How We Can Help

We needn’t try to convince these individuals of anything or to challenge their doubts and
disappointments, nor is it helpful to add our own negative conviction to theirs. If we hear
them saying (directly or others) that life and the world seem devoid of love, order, and
meaning, then agreeing or disagreeing isn’t the issue. Rather, the issue is how the world
feels to them right now – and thus, anything we can do on the side of life, calm, and
meaning will be most valuable.

The kindest response we can offer is one of listening, conveying acceptance that the
questions are being asked, and doing and saying things that help restore a sense of love,
justice, protection, and order in our world – even though what has happened is shocking,
unfair, hateful, or a result of temporary chaos.

We don’t necessarily have to convey all that in words. Instead, it can be in
compassionate care provided, accompaniment through agonizing tasks such as
funeral preparations, and the gentle and timely restoration of routine. We try to provide
living proof for one another that we live in a world in which there is great goodness, even
though it is also a world in which terrible tragedies sometimes occur.

When Children Have Questions

Children sometimes raise religious questions in the midst of tragedy too, although less
often than their parents. It is important to ask them what they think and to try to support
what they wish to and are able to believe, particularly if it is strengthening and
reassuring.

As adults, we needn’t profess beliefs we don’t have, but we can be respectful of our kids’
hopes – even when our own beliefs and faith are shaken.

Children need their sense of security restored and anything that helps with that (and isconsistent with their family's practice and belief) is what counts. Young children may not be able to conceive thatsomeone who was once here is now not somewhere (this is difficult enough for adults);most older children can conceive of people living on within our hearts, or of souls. It’s essential that we listen to children’s questions before we compose our answers, asvery young children age may not be clear about the permanence of death and thedifference between being alive and no longer alive. They still may be most concernedabout being separated from parents themselves and are reassured that the child or adultwho has died is not "somewhere" suffering and crying out in loneliness. At moments of traumatic crisis, children’s faith and trust in the people they have countedon to protect them may be more significantly shaken than their religious faith. Anythingadults can do to restore their sense that the people around them are working to restoresafety will matter most. They need to be allowed to remain close to caring adults and tohave a sense of calm – and, eventually, joy – returned to their lives. Perhaps in this way, children and adults are more alike than different: All of us need tofeel we are not alone and that there are trustworthy sources of hope, security, and joywithin our world.
Rabbi Edythe Held Mencher, LCSW, serves as Union for Reform Judaism faculty forSacred Caring Community and is director of the URJ Presidential Initiative forDisabilities Inclusion.

If you're not on Twitter you wouldn't have seen this. It's practical advice on isolation from a guy who spent a lot of time on submarines

Jon Bailey‏ @SloopJontyB Mar 20

During my time in the Submarine Service, I - along with many others - endured many weeks and months cooped up in a steel tube under the waves. I just thought I'd share a few coping strategies for many of you now facing a Covid-19 "patrol".

More

ROUTINE: Life at sea is dictated by shifts and routines. You can tell what day it was by what was for dinner.Make a routine now, test it then write it down & stick to it. Divide your day up in to work (if home working) rest, exercise, meals, hobbies, etc. Do the same for kids.

PRIVACY: the only place private at sea was your bunk. Make a dedicated private time / place in the routine. Even if you timeshare the front room get everyone a couple of hours alone. Do whatever you want: watch shit films, pray, yoga, arrange matches: whatever gets you through.

EAT: scran onboard was usually pretty good and broke up the monotony of patrols. Take time to prepare meals. A good mix of "feast & famine" will stop the pounds piling on - one boat dis Steak Saturdays, Fishy Friday, Curry & Pizza nights. On other days soup & bread was enough.

EXERCISE: you'll have the advantage of not having to use a spinning bike in a switchboard. 20-30mins a day of whatever as a minimum. Fitness Blender on YouTube has workouts for all. It's a natural antidepressant, breaks up the day and keeps you healthy. Get outside when able.

CLEAN: that house is going to get grungy now you're spending a lot more time in it. Put time in your daily routine to clean and stick to it.

CONNECT: even during radio silence we still got a weekly telegram from loved ones back home. This was a weekly highlight. Keep in touch with your people. My current work have agreed a daily "coffee" catch up online even if there's no work to discuss.

PERSPECTIVE: like all other patrols, this one will end. It's a dirt sandwich but better than dodging barrel bombs. Don't obsess the news or Twitter. Bring your world closer, focus on little things that you enjoy & make plans for the future. At least you should have a window!

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