january 2020 newsletter · william osler health system brampton after stroke group ... and in 2011,...

of 18 Halton-Peel Community Aphasia Programs Newsletter – January 2020

January 2020 Newsletter

May the new year bring you renewed opportunities for growth, positivity and wellness.

“Twenty-twenty… That’s easy to say!”

- H-PCAP member

http://www.h-pcap.com/


Happy New Year! From all of us at H-PCAP

Pictured: H-PCAP Clinical Team

Missing: Admin team and Board of Directors



Highlights from December

Halton Children’s Aid Society Donations

A huge thank you to those who brought in donations. Your generosity blew us away!


of 18 Halton-Peel Community Aphasia Programs Newsletter – December 2019

Highlights from December

Holiday Socials Celebrating the joyous season at our



Staff Announcement

Melissa Dizon has joined the H-PCAP team as an on-call CDA.

Welcome Melissa!



Special Announcment

Brittany Clark, one of our beloved SLPs, and her family welcomed a beautiful little girl to the world.

Ayla James Olivia Clark Born on November 3rd

7 lbs 6 oz

Congratulations!



Aphasia Programs Schedule

We’re back!

Please note that all aphasia programs will be running after New Year’s Day.

We hope everyone enjoyed a restful holiday season!

January 1

Happy New Year! All groups

closed

2

All groups open

3

All groups open

4

5

6 7 All groups

open

8 All groups

open

9 All groups

open

10 All groups

open

11



January Events Caregiver Support Groups

Paula-Jane, Social Worker, will be hosting an upcoming Caregiver Support

Group in Milton:

When: Wednesday, January 22nd from 12:30 – 3:00 p.m.

Where: Milton Legion, 21 Charles St., Milton

Topic: Caregiver Stress and Depression – assessment tools and

knowing the signs

Please RSVP by January 17th to Paula-Jane at

[email protected] or phone 289-681-4904

Thank you!

*Please note: These sessions are meant only for caregivers, however the person

with aphasia is welcome to join the aphasia group running at the same time, if

needed.


mailto:[email protected]


Primary Progressive Aphasia Support Group Paula-Jane, Social Worker, will be facilitating a support group for people living with Primary Progressive Aphasia:

When: Tuesday, January 21st from 10:00 a.m. – 12:30 p.m.

Where: Burlington Legion, 828 Legion Rd., Burlington

Topic: Primary Progressive Aphasia and depression

Please RSVP by January 17th to Paula-Jane at 289-681-4904 or

[email protected]

Thank you!

*Please note that these sessions are meant only for the person living with Primary Progressive Aphasia (not caregivers or family members).




Community Stroke Support Groups

Milton Milton Stroke Support Group Tuesday, January 14th, 2019, from 7:00 pm – 8:30 pm Allendale Long Term Care Centre in the Adult Day Program Room

Mississauga & Brampton (Peel Region) Peel Stroke Recovery Canada Tuesday, February 4th, 2019, from 6:30 pm – 9:00 pm Sunrise Senior Living, 1279 Burnhamthorpe Rd. E, Mississauga

Burlington & Oakville (Halton Region)

Halton Stroke Fellowship Stroke Recovery Chapter Thursday, January 23th, 2019 at 2:30 pm Columbus Hall, 2400 Industrial St., Burlington

Website: http://search.hipinfo.info/record/BTN4841

Stroke Recovery Canada – Burlington Chapter Wednesday, January 22th, 2019 at 7:00 pm Lions Club, 471 Pearl St., Burlington

Website: http://www.srcburlington.net/

Brampton William Osler Health System Brampton After Stroke Group Date and time for 2020 to be announced Brampton Civic Hospital, Auditorium (1st floor, by Rexall) For more information about After Stroke groups, visit:

https://afterstroke.marchofdimes.ca/stroke-recovery/stroke-survivors


http://search.hipinfo.info/record/BTN4841

http://www.srcburlington.net/

https://afterstroke.marchofdimes.ca/stroke-recovery/stroke-survivors


Caregiver Resources

The National Aphasia Institute has released a free e-book to help

navigate caring for a person with aphasia.

This e-book provides concrete tools and advice surrounding a variety

of topics, including finances, how to be an advocate and processing

complex feelings that may arise as a caregiver.

Download available at: https://www.aphasia.org/aphasia-

resources/aphasia-caregiver-guide/


https://www.aphasia.org/aphasia-resources/aphasia-caregiver-guide/

https://www.aphasia.org/aphasia-resources/aphasia-caregiver-guide/


Story of a Stroke Survivor

A speech for the West GTA Stoke Steering Committee

When asked to take part as a patient volunteer, I thought ould be able to help improve others with stroke as part of the Stroke Steering Committee.

I am now retired. My background was in healthcare and business for more than 30 years. My experience includes an RN, a CCRN (Certified Critical Care RN), a CCRA (Certified Clinical Research Associate), and a Computer Program Analyst.

At the age of 40, I became an RN. My experience as an RN has been in many therapeutic areas - mostly in oncology and ICU.

Throughout my life, I have been a volunteer - Board of Directors at the corporation 273 in my condo, Board of Directors - fundraising at the swim club of my son, weekly volunteer at 0TMH at 1985, 1986, 2012 - 2013.

I have been a research patient at UHN (research in CHESTPAIN in Women).

I was part of a Stroke research study after my stroke (testing a new drug - (xaralto).

And in 2011, I volunteered as a nurse in a little town in Jinja - Uganda, Africa - Health clinic & Maternity clinic areas.

I have 2 adult children, and 2 grandkids. My son is in school, doing his Masters in Calgary. He is a wonderful artist in sculpture. My daughter and husband both work in business, and my grandkids are age 12, and 4 years. They are very busy with hockey games, swimming, dancing and son-in-law has some travelling in business.




Continued

It was difficult after my stroke, so it’s a good thing that I’m independent….but difficult. My son helps me more in his humour and understanding.

A couple of years after my stroke we had a full family meeting together with my SLP. After that, things changed. My daughter and her husband understood how to help me - like to wait for me until I could get the words out...I knew the word, but couldn’t get it out! The brain is “in there" but the stroke changes the nerves. They helped as much as they could, but they have kids, programs & business working full time.

At that family meeting my grandkids were there too. There was a movie about a “Grandfather who can’t talk” – my grandson was very interested about it and learned a lot. I guess he helped me many times - he’d say gramma it’s Pizza - until I could get it right (Pi-sza Piazza). My granddaughter would quite often say your ‘funny Gramma’ & hug me.

Before March 2014, I was a very active woman of 66 years and in early retirement. I enjoyed several active vacations; I belonged to a fitness club where I took spinning, yoga, and was a serious swimmer again. In one year I went from being active to being unable to do any activity without symptoms - and took 19 pills a day.

In April 2015 I had open-heart surgery for a disease called HOCM ( hypertrophic obstructive cardiomyopathy), and with NYHA class III. After the surgery, the chest pains continued - I was unable to sleep well for a year until I had the staples removed in April 2016.




Continued

My doctors think that the surgery probably resulted in my stroke! (a small clot probably broke off from the inside of my heart)

In May 2017, I had a headache in the evening and I took a Tylenol and I slept overnight. In the morning I was having my coffee and breakfast and was ready to read my Globe. My partner phoned me early about 8am. I’d thought I had said “Hi honey, I’m fine!” - I think you’ve had a stroke, call 911.

As I was saying it, I heard it sounded weird but I thought I couldn’t call because I couldn’t say anything. So I went upstairs washed and got dressed and went to Fran’s, a neighbour across the road. Well as soon as I started talking, she knew and called 911.

I was in shock, I couldn’t have a stroke - I’m keeping up with fitness, but I couldn’t say any WORD. I realized that my arms, legs and lips were normal - Whew! I was lucky , no other deficits, but NOT able to talk. I learned the word ‘cognitive function’. I realized that I could think but could not get the words out.

The paramedic ask me who I was but I couldn’t say a word, so I gave my cell to him, and showed him my icon that has a heart on it, which has all my medical information.

Over the next few days I slept a lot, but my brother and sister in law have a good friend who knew someone in the stroke area in Trillium. My brother emailed the address to me but then a good friend emailed the information to this person who was Dana Lesko, the Stroke Navigator in Trillium. (I wasn’t

able to do emails yet). Dana has helped me so many times in the last 2 1/2 years.



Story of a Stroke Survivor Continued

I was in to the hospital for 2 weeks. I’d walk through the hospital halls figuring out every word I saw - surgery, stroke, etc. I was able to my Sudoko, but reading was very slow. I slept many naps and I didn’t realize I was in depression. Over the next couple of months I kept crying when I was with family or just for anything. Celexa medication has helped. When I tried to say anything - I would say F.F..F…F***! I didn’t want to say that...but ? Very frustrating. My psychiatrist said ‘I think you need a new word!’

Still in the hospital -I was thinking- what did I do before?? I knew it was medical, but? This was in the night - thinking and thinking - then I knew it was research - I was a CRA – and worked with white blood cells…then I wrote the word - Leukemia!!

My partner was always here for me, he’d be able to understand me. From the beginning, I had speech language lessons in the hospital every day. When I got home, I had a speech language pathologist (SLP) about three times a week. I also had a SLP at the hospital once a week.

Uber was getting costly, so I tried getting the bus. Online it is very difficult, hours to get it, but I then went to the bus station. I talked with the bus man who helped me to do it so that’s the way I learned how to do all the buses. The bus man helped me to say, where I needed to be, he’d get my bike on & off and helped me to do transfers. I was happy when I got my driver’s license back!

I usually get lost, even with directions. But, I find my way because I talk to people - they really help me.



Story of a Stroke Survivor Continued

After a year I thought I would be fine; after my second year I still had issues in my speech. It was still frustrating with no way to be in a conversation with friends.

I tried everything I could to talk every day. My Aphasia lessons were 2 1/2 hours a week after my second year. I always tried reading, playing bridge, swimming (I’d change my stroke each lap, just to keep my brain active) or with a few friends to have coffee.

But in 2019, breast cancer caused some new problems. I had surgery and radiation before it was finished. For a while I’ve become very tired and frustrated. So, after I finished my cancer treatment, I found a new program in the Aphasia program in Monarch House.

It is the only program in Canada that has a program in Intensive Aphasia. The program was for 12 weeks with three days a week and 4 1/2 hours every day. It was a lot of work, but I’d have a nap after noon, and have a walk. It was a wonderful program and worthwhile. My reading in sentences and vocabulary was much better. Monarch House found an audio/text application for on my cell phone (in Rogers). I had a lot difficult to hear doctors appointments, meeting times, and phone #s. The application takes voice messages in my cell, & puts it in a text! Very cool and much easier!

Even with all the work I’ve done over the 2 1/2 years, this speech took me about 20 hours to write, and a few hours to practice. But I did it!!

I would like to help others after stroke. It seems that programs in this Steering Committee would help me and other patients after stroke.



Donations

All donations go to improving the lives of individuals living with aphasia.

How to donate:

• Online: http://www.h-pcap.com/donations.html

• Cheque or money order:

o Halton-Peel Community Aphasia Programs

c/o Monarch House

1405 North Service Rd. E., Unit 103

Oakville, ON, L6H 1A7

A charitable donation tax receipt will be returned to all Canadian addresses for

donations $20 or greater.

Thank you for your support and generosity


http://www.h-pcap.com/donations.html


For more information on any resources in this newsletter, please feel free to call

us at (905) 875-8474 or email us at [email protected]

Past editions of our newsletter are available on our website at www.h-pcap.com




january 2020 newsletter · william osler health system brampton after stroke group ... and in 2011,...

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