Newsletter Spring/Summer 2014

cropped-images-11.jpeg www.sclerodermasaskatchewan.ca 

   Scleroderma Insight
  Spring/Summer 2014

President’s Report
Hello to members and friends receiving Scleroderma Insight.  I hope you found a warm, cozy place where you could rest and relax during the cold winter months.  Perhaps you were fortunate and fled to warmer climates.   I must admit I was a little envious of those who were able to do that, as spring certainly seemed like a long time coming.

My family had planned to spend Christmas in San Diego, but due to illness, I was not able to fly.  However, the rest of my family enjoyed warmer than normal temperatures in San Diego.  At our support group meetings, members often comment on how people (including medical professionals) are not aware as to what scleroderma really is, and how it affects those living with it.   After a week’s stay in hospital, l know from personal experience just how true this is.  I believe, we must work together to raise awareness of this disease.

Our Support Group Meeting was held on April 28th in Regina.  Guest speaker, Sandi Nixon, spoke on ‘Healing Through Meditation’.   Sandi lead us through a twenty-minute meditation experience.  I trust those present found the meditation to be restful and relaxing.   Meditation is a simple and direct practice of moment-to-moment investigation of mind/body process through calm, focused awareness.   Sandi encouraged us to practice and integrate meditation into our daily lives.

Last year, the Scleroderma Society of Canada asked its Provincial Chapters to send a letter to their respective Premiers requesting June to be designated as “Scleroderma Awareness Month”.   On May 21, 2013, I sent a letter to Premier Brad Wall with that request.

On May 7th, 2014, I received the following letter from Honourable Dustin Duncan, The Minister of Health.

Dear Ms. Goulet 

This is in reply to your letter of May 21, 2013, forwarded to me, requesting that June 2014 be proclaimed as “Scleroderma Awareness Month” in Saskatchewan.

  I am pleased to comply with your request, and am enclosing a certificate of recognition to mark the observance.  

Please accept my best wishes for a successful “Scleroderma Awareness Month” campaign.  

Yours sincerely
Dustin Duncan
Minister of Health

Duncan

Duncan1

Joyce Kellington, Shirley Gillander and I met with the Health Minister and had a few pictures taken as he signed the “Certificate of Recognition”

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The past 6 weeks have been very busy, as we prepared for ‘June  – Scleroderma Awareness Month’.   SASK members, along with family and friends, were selling Raffle and Steak Night tickets to raise awareness of scleroderma and financial funds for scleroderma research.

Thanks to Shirley Gillander for booking our event with the Tap, looking after ticket sales and helping with financial records for this event.

Andy Sereda and Laurie Cole, were top sellers of raffle tickets.  Each sold a total of 150 raffle tickets (6 books).   Way to go!!  Thanks for a job well done.

Thank you to the Sereda family, for taking on the responsibility of the 50/50 draw at the Steak Night.  They did a smashing job, raising a total of $584. The winning ticket for $292 belonged to Shirley Gillander.

Thanks to Derrick Goulet for accepting the job of MC at the last minute.

I‘d also like to recognize David Schaan, who travelled 2 hours, from Young to Regina, to attend our Steak Night.  David also sold one of the winning raffle tickets.

THANK YOU to ALL who contributed in any way to help make our events successful.

In October, I will be completing my sixth year as President with SASK.  At our April meeting I notified the nominating committee that I will be stepping down from this position.  It has been a most rewarding journey and it is my hope that ‘you’ will consider filling this vacancy.

For those who have never attended a National Scleroderma Conference, I would like too encourage you to do so.  It will be held in Winnipeg, from September 18th to 20th.  Please see more information on the Conference, where to register, and the schedule of events further in this edition of our newsletter.

I wish everyone a warm, happy summer and hope to see you on October 18th at our Support Group Meeting in Regina.

Louise Goulet

Happiness is not something ready made.  It comes from your own action.

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June 2014 designated “Scleroderma Awareness Month”

To kick off our campaign, on May 29th, Louise was the guest presenter at a Strawberry Social held at Christ The King Parish in Regina.  Louise spoke to 50 members of the Catholic Women’s League of her personal experience living with scleroderma.  Following the presentation, Louise invited those in attendance to share information about scleroderma with their families and friends to help spread awareness.

On June 8th, SASK hosted a very successful Steak Night at the Tap in Regina.   One hundred and twenty-one tickets were sold and those in attendance enjoyed a delicious meal with time to socialize amongst family and friends.

General

A few SASK members approached local businesses inviting them to donate a door prize to the Steak Night.  We were very fortunate and received generous prizes.

SASK would like to thank the sponsors who so kindly donated and also the members who took on the task of collecting them.

Rollins

Above is Joanne Rollins drawing a winning ticket for a door prize.

Monique

Monique Sereda (seen above) was one of the fortunate door prize winners.  Door prize presented by Louise Goulet.

During the month of May, SASK members, friends and family were busy selling raffle tickets.

Winners were drawn at the Steak Night.  Prizes included 2 quilts made and donated by Shirley Gillander, and 5 – $100 gift cards to the Rider Gift Store, donated by the University of Regina Rams.

Rider gift cards winners are:
Myrtie Rempel  – Nipawin, SK
Derrin Raffey – Saskatoon, SK
Joanne Phillips – Vicount, SK
Shelinda Hill – Nipawin, SK
Neil Stephenson – Regina, SK

Winners of the quilts are:
Debby Shay – Oxbow, SK
Muriel Malin – Gainsborough, SK.

During the first week of June, St Joseph’s Hospital of Estevan displayed a bulletin board of Scleroderma Information at their annual Staff Education Days.  The goal was to provide awareness of scleroderma to caregivers and provide pertinent information so all medical personnel are better prepared to care for someone with scleroderma.

St josephs

ATTITUDE- Attitudes are contagious… is yours worth catching?

From June 16th through June 30th, a large banner will hang in Regina, across 11th Avenue on the pedway in front of the Cornwall Centre declaring “June – Scleroderma Awareness Month”

During the month of June, members of SASK Support Group were invited to take information cards and pamphlets to local hospitals and medical offices.  These cards provide a brief description about scleroderma, what our mandate is, and contact names for patients with scleroderma.  Our hope is to increase awareness of scleroderma to both those in the medical profession and the general public.  The cards have the SASK web site and the name of someone to contact for support and information on scleroderma.

Scleroderma Meeting Minutes April 26, 2014

The spring meeting of the Scleroderma Association of Sask. was held at the Wascana Rehabilitation Center in Regina on April 26, 2014 with 9 in attendance.

President Louise Goulet called the meeting to order at 10:35 am and welcomed those present.  A moment of silence was observed for Laura Corbett, Elsie Skubovious, Anita Giroux, Muriel Stuart and Evelyn Samchyk who have died since the fall meeting.

Moved by Andy Sereda, seconded by Gerald Shauf that the agenda be adopted as printed.  Carried.

Last meeting’s minutes were declared adopted as read by Louise Goulet.

In business arising from the minutes, High Heat Gear products are not available to be examined due to some miscommunication with the owner.

The Treasurer’s report showed a balance of $9,136.28 with memorial donations down.  Shirley Gillander received an income tax receipt for her quilts.  They are a donation to SASK for our raffle.  He also indicated that 2014 memberships are now due.  Moved by Gerald Shauf, seconded by Joyce Kellington that the Treasurer’s report be adopted as printed.  Carried.

In correspondence, we received a thank you note from Don Drysdale, husband of the late Dr. Janet Markland, acknowledging our donation to CSRG in her memory.  Louise Goulet has been in contact with 3 newly diagnosed Scleroderma patients, also with 3 men from Saskatoon with scleroderma.  One of these men is interested in Antibiotic Therapy for Scleroderma.  One who spends the winter in B.C. was given information on the B.C. organization and was in contact with them there.

In new business, June is Scleroderma Awareness Month.  We will have a Steak Night on June 8th at the Tap in Regina on Rochdale Blvd.  Tickets are $25 and must be sold by June 1st or returned to Shirley Gillander.  Raffle tickets will be drawn there.  Members will canvas businesses for door prizes.

Elections will be held in October 2014 and Louise Goulet stated she will not run again for president.

Members are encouraged to make contributions to our newsletter, Scleroderma Insight, on any topic, personal or not.

A note was read from Janet Campbell concerning our meeting minutes being circulated to members in the newsletter.  Normally they are only sent to the executive and aren’t available to others until adopted at the next meeting.  After some discussion regarding our widely spaced meetings and how else to keep members informed of activities, it was decided to leave this matter as is for the time being.

Louise Goulet gave a report on the SSC.  The website has brought awareness to more people with Facebook and Twitter sites accessed by thousands, getting information on research and showing interaction between doctors and patients.

The SCC 2014 Convention will be in Winnipeg from Sept 18-20.  The agenda was circulated.  SSC has hired a new part-time executive director.

The CSRG reports that their funds are very low and they may not be able to continue their research.  SSC funds them for part of their costs.  It was suggested that they discontinue giving their patients $25 for travel costs.  The mouse research project also needs funds.

Following a lunch break the meeting reconvened at 1:05pm.  Raffle tickets and Steak Night tickets were handed out to those present.

In sharing time, one member reported that she has a better tolerance for winter weather since starting to use sildenafil citrate (Viagra) and has gotten exceptional drug status for it to lessen its cost.  She has had a stress test for pulmonary arterial hypertension and described the procedure.  There was some discussion on the usefulness of echo-cardiograms.  One member had a bad reaction to an antibiotic that caused pneumonia-like symptoms requiring hospitalization and aggressive treatment.  One member described her experience with cataract surgery.  There was some discussion on stretching the esophagus that a few Scleroderma patients require.

Guest speaker, Sandy Nixon, was introduced by Louise Goulet.  Her topic was Healing Through Meditation.  She is a medical social worker who was diagnosed with fibromyalgia 21 years ago.  It was very widespread for 15 years, then lessened some but is still present with migraine, light sensitivity and chemical intolerances.  Meditation has benefited her a lot – she still has symptoms but is coping better.  She now feels very comfortable with the practice.

Mindfulness meditation is a Buddhist tradition that brings our attention to the present moment.  One can move attention to different parts of the body and be aware of our senses.  Meditation is done with eyes closed but if you are too sleepy, open your eyes or give a little tug on one ear, or stand up if it is comfortable.  Sandy demonstrated typical positions using cushions for support.  Meditation length can vary – normally 20-30 min. in a class.  She then led the members in a 20 min meditation.  Afterward they commented on the experience.  Joyce Kellington thanked Sandy Nixon for her presentation.

The next meeting will be on Oct 18, 2014.  A physical therapist has been asked to be guest speaker.

Inquiries have been made about a Walk-Run Fundraiser by Joyce Kellington.  This may be too much for our group to undertake.

There was discussion on how to spread awareness and knowledge of Scleroderma among medical professionals.  Many know nothing about it.  Carolyn Hamilton had some suggestions re: publicizing our organization.

In view of the fact that Louise Goulet will not run again for President in the fall election, Gerald Shauf queried as to whether the fall meeting will be our last.  The reality is that most of our members are unwilling or unable to take on such responsibility.

Gerald Shauf moved that the meeting be adjourned.

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SASK Fundraising & Awareness Items:

We have the following available: Floral note cards: There are 8 different floral designs in each package.  Scleroderma contact information is printed on the back of each note card. They are very pretty cards to use or give as gifts. The cost for a package of 8 notes and envelopes is $6.00.

Magnetic ribbons: These are similar to the lapel pins. They are 8 inches x 2.5 inches and are $2.00 each. Put them on your car or your refrigerator.

Lapel pins: The attractive lapel pins are dark blue with Scleroderma printed on them in white letters. The cost is $3.00

SASK6

Please contact Gerald Shauf (306) 634-3433 or Janet Campbell (306) 757-0962 for more information or to place an order.

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Scleroderma Society of Canada’s 15th Annual Conference “An Integrated Approach – Creating a United Front”

Register at: www.sclerodermamanitoba.ca

 (Please note that the program schedule and the breakout sessions are subject to change.  However, we will do our best to maintain the following schedule. When registering, please ensure that you indicate the breakout sessions you plan to attend.)

Thursday, September 18th, 2014
Wine & Cheese Meet & Greet Reception (Canad Inn Destination Polo Park)
Time: 6:00 to 9:00 p.m. Come and meet some of your fellow conference attendees.

Friday, September 19th, 2014
8:30 to 10:00 Registration
9:00 to 10:00 General Meeting
10:00 Opening Ceremony

  • Master of Ceremonies – Sylvia Kuzyk
  • International Conference Report (Rome)
  • Award Presentations
  • Bonnie Hopps – “Fun With Exercise”

12:00 to 1:00 Lunch

1:00 to 1:45 Breakout
A. Bonnie Hopps, Arthritis Society “Pain Busters” The main objective of this session is to improve your understanding of chronic pain management, introduce different coping methods, and encourage you to take an active role in managing your pain. The program’s intention is to help those with chronic pain, as well as to teach family members, partners and friends how to support them.

B. Shonna Pepper & Cheryl Kehler, Disability Tax Credit Services – “What You Need To Know” Shonna Pepper & Cheryl Kehler will share with you “What Canadians need to know about the Disability Tax Credit, What is the Disability Tax Credit, Who is eligible, What is the criteria, How to apply, Is the credit retroactive, Are you a caregiver and How they can provide support through the process.

2:00 to 2:45 Breakout
A. Diane Sidebottom, Licensed Aesthetician – “Make up – Health in Your Beauty”

We want you to have health in your beauty.  Join us for an informative and educational 45 minute session on skin care and cosmetic products that are available and appropriate for use with Scleroderma.  Our professional Aesthetician will demonstrate how to use these products and how you can look and feel your best. At One Great Spa by Giselles, we want to contribute to your overall well-being, not just the surface enhancements and we offer a wide range of products with no harmful synthetic chemicals and preservatives.

 B. Cathy Sochasky, BScPharm FCSHP – “Scleroderma – A focus of the treatment of the Musculoskeletal/Inflammatory Symptoms”.  A review of the various drugs used including side effects, combination use and their differences.

3:00 to 3:45 Breakout
A. Fernanda Saraga, Phd – “Bioflex Laser Therapy: An Alternative Treatment For Scleroderma” This talk will discuss the mechanisms of action and clinical applications of Laser Therapy for the causes and symptoms of Scleroderma. This non-invasive, pain-free, light-based therapy has been shown to modulate inflammatory cytokines, reduce oxidative stress, increase angiogenesis and provide an analgesic effect. It is also very effective in treating complex wounds. 

B. Kimberly Watkinson, Pharmacist – “Making Sense of What We Read About Scleroderma Treatments” Presentation will cover how therapies are researched and concepts of evidence-based medicine.  An objective of this session is to allow you to better evaluate medical information found on the internet to assist with making informed decisions.  Session will include a review of evidence for some proven, unconventional and experimental scleroderma treatments, including stem cell transplantation.

4:00 to 5:00 – Main Room Q & A Patient Advocacy Panel

5:45 Bus to DeLuca’s for Optional Evening including Dinner & Cooking Demonstration.  Please refer to our “A Taste of Italy” page for information about the menu, The De Luca Family History and The De Luca Chefs.  A gluten free version of the planned menu will be available if requested in advance when you register for the conference.  Cash bar will be available.

Saturday, September 20th, 2014

8:00 to 9:00 Registration & Breakfast

9:00 to 9:45 – Main Room
Dr. David Robinson—”Scleroderma 101”

10:00 to 10:45 Breakout
A. Dr. Jennifer Armstrong – “Successful Antibiotic Treatment for Scleroderma Patients” Dr. Armstrong has been seeing Scleroderma patients since 1999 and has implemented the antibiotic protocol to empower patients to lead a full and productive life.  She will talk about the benefits and risks and will present several case studies.

B. Tenille Sonnichsen, Registered Dietitian – “Gluten-Free Eating with Scleroderma” Nutrition management is a very important part of optimizing health for individuals with Scleroderma. One of the common dietary offenders for individuals with Scleroderma is gluten. Learn the principles of the gluten-free diet and nutrition guidelines to help fight inflammation reduce your chance of malnutrition and to help manage symptoms of Scleroderma.

11:00 to 11:45 – Main Room
Dr. Tracy Frech, Rheumatologist – “Itch in Scleroderma” One of the more bothersome symptoms in Scleroderma.

11:30 to 1:30 Educational & Informational Fair.
Visit the vendor booths for helpful and interesting information.

12:00 to 1:00 Lunch

1:00 Cake Presentation by the Arthritis Society

1:00 to 1:30 Tenille Nadkrynechny- Country Music Artist
Tenille embarked into 2013 with her single “Dear Heart” off her new album “Light.”

1:30 to 2:15 – Main Room
Dr. Frederick Wigley, Rheumatologist—”Raynauds & Pulmonary Hypertension”

2:30 to 3:15 Breakout
A. Dr. Sara Korsunsky – “Naturopathic Medicine – “Treating The Whole Scleroderma Patient” Dr. Korsunsky’s presentation will include “What is Naturopathic Medicine”; the foundations of health and healing the immune system naturally; improving energy and sleep; natural alternatives and complementary therapies.

B. Lindsey Lorteau, Speech Pathologist – “Speech & Swallowing in Scleroderma”
Disorders of swallowing or dysphasia, as well as changes to the voice and speech, can occur in Systemic Scleroderma.  Swallowing patterns & symptoms of dysphagia will be reviewed.  Assessment and management related to communication & swallowing will also be discussed.

3:15 to 4:15 – Final Q & A Medical Professional Panel

4:15 Finale

Kudos, Raffle draw, Conference 2015

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Saskatchewan Parking Program for the Disabled: Phone: (306) 374-4448. Handicapped parking permits cost $10.00. Successful applicants receive parking placards allowing them to park in designated areas for handicapped. Applications are available at any branch of Saskatchewan Abilities, or any motor vehicle issuing office. Ask your doctor if you qualify. Try to look at getting the placard as a way to make your life easier.

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The more we care for the happiness of others, the greater our own sense of wellbeing becomes.
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President/Fundraiser:
Louise Goulet: Phone: 306- 584-1950
louise.goulet@sasktel.net

Vice-President/Fundraiser:
Shirley Gillander Phone: 306-525-6377
sdgill@sasktel.net

Recording Secretary:
Olga Sereda: Phone: 306-693-1936
No email address

Corresponding Secretary:
Norma Redman: Phone: 306-532-4449
norperredman@sasktel.net

Newsletter co-Editor:
Janet Campbell: Phone: 306-757-0962
janet.campbell@uregina.ca

Treasurer/Newsletter co-Editor:
Gerald Shauf Phone: 306-634-3433 465 Willow Bay Estevan, Sask. S4A 2G3
glshauf@sasktel.net

DISCLAIMER: The Scleroderma Association of Saskatchewan does not endorse any drugs or treatment. We wish only to keep you informed. Please check any treatment with your own physician. 

Remember: In the middle of difficulty lies opportunity

Our greatest glory is not in never failing, but in rising every time we fall.

 My Pulmonary Function Test: Joyce Kellington

“In January I went to Saskatoon University Hospital (Pulmonary Functions Lab) for a cardiopulmonary stress test.
I had questionable echocardiogram numbers and they were doing this test instead of a catheter into the heart, which they considered too invasive.
I was to use an exercise bike instead of a treadmill because I had a sore knee.
They put a head band on me to monitor blood oxygen because my fingers aren’t good, I had a blood pressure cuff on my arm, and a pulmonary functions mouth piece hooked up to the machine and a clothes pin on my nose.
I started to pedal. I was to maintain a certain speed (if I could). At intervals, the blood pressure cuff would pump up or the technician would call blow, and then I had a guy beside me with a clip board, with a list of choices on how my level of fatigue was and how my breathing was which I had to point to. I was so shaky toward the end that I couldn’t aim at right choice not to mention not being able to decide how I felt. There were 6 people in the room, all cheering me on.
I was to let them know when I thought I was finished so they could take a final reading but I was too exhausted to tell them. It seemed like this all took at least 15 minutes but it probably wasn’t even 5 minutes.
It is April now and I haven’t heard from anyone, so I guess I passed.”

If you have any suggestions, health tips, or stories you wish to see featured in Scleroderma Insight please mail or email them to Gerald Shauf or Janet Campbell. We would like to hear from you and share your ideas/stories/health tips with all our members.

 

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