- Enjoying the World Cup rooting for England (boo), the Netherlands (YaY!), Colombia, Costa Rica, and all African teams!
- Danny FaceTiming me from Italy and meeting my brother because of the magic of technology
- Not one, but two Keurig coffee machines (thanks Don!)
- Incredible support & great atmosphere at the ALS walk
- Travis teaching Don all things Apple
- Dinner at Aperitivo (tasting plates) with Annemarie, Dad & Don
- Dinner at town with cousin Chelsea
- Road trip with Don to Bowmanville
- Visiting with Wendy, Mike, Brad, Wayne & Sue (staying up way past our bedtime because we had so much fun)
- Visiting with Granny in her posh retirement residence
- Chilling out on our balcony in the Sun
- Travis & Don making BBQ Salmon on our rooftop terrace
- Steve Martin and the Steep Canyon Rangers featuring Edie Brickell at the Ottawa Jazz Festival
- Brittany & Sean making us amazing food and hosting my family not once, but twice!
- Don trying a TimTam New Zealand style
- Don loving his bed & dreaming
- Not having to say goodbye to Don because we will see him in September in Antigua
We had a wonderful visit with Don! Highlights & Awesome things include:
I am very proud of my British heritage, the Queen & Winston were brilliant in the face of adversity. Churchill said "Never, never, never give up". Brian Parsons, whom I was fortunate enough to meet during the Walk for ALS, was interviewed by the Ottawa Sun. I have included the article in the button below. He eloquently and candidly describes what it is like to live with ALS.
Yesterday I was given a diagnosis of "PBC" (Primary Biliary Cirrhosis), which has nothing to do with ALS. You'd think that one disease would be enough! Fortunately, it is a mild and early form of PBC and the only lifestyle change I need to make is to now take 2 pills a day to manage it. "Keep Calm and Carry On!"
I am very fortunate to have many sources of inspiration, and of course love and support from across the globe.
Patient information: Primary biliary cirrhosis (The Basics)
Written by the doctors and editors at UpToDate. All topics are updated as new evidence becomes available and our peer review process is complete.
What is primary biliary cirrhosis? — Primary biliary cirrhosis (called “PBC” here) is a disease that damages the liver. The liver is a big organ in the upper right side of the belly. PBC happens when the body’s infection-fighting system, called the “immune system,” attacks the liver.
PBC is a serious disease. It can scar the liver and make it stop working. This can cause death. Most people who get PBC are women, but men sometimes get it.
What are the symptoms of primary biliary cirrhosis? — Some people with PBC have no symptoms. When symptoms do happen, they can include:
●Feeling very tired – People who have PBC are often sleepy in the daytime, even if they slept at night.
●Itching – This can be worse at night, if a person wears tight or itchy clothes, or in hot weather.
●Skin changes – These can include:
•Hives – Red, puffy areas that happen where a person scratches or rubs the skin.
•Dark patches on the skin
•Yellow color of the skin and whites of the eyes – This is called “jaundice.”
●Pain in the joints
●Dry eyes and mouth
●Belly pain (on the upper right side of the belly)
●Losing weight without trying
●Memory and thinking problems
How is primary biliary cirrhosis treated? — Doctors treat PBC with medicines to slow down the liver damage. Other treatments include:
●Diet changes – For example, some people with PBC need to eat less fat.
●Vitamins – Some people with PBC do not get enough of certain vitamins from food. If you are not getting enough vitamins, the doctor can tell you which vitamins to take and how much. Do NOT take any vitamins or medicines without talking to your doctor or nurse first.
●Medicines to treat health problems caused by PBC, such as itching or anemia (having too few red blood cells)
●Liver transplant – If your PBC is severe, or the medicines to slow down liver damage do not work, you might need a new liver. During a transplant, a doctor does surgery to replace the damaged liver with a healthy one.
Ask your doctor if you might need a liver transplant for PBC. If you do, your doctor will do more tests to make sure you are healthy enough for this kind of surgery. Then your doctor will put you on a waiting list for a liver transplant. Liver transplants are given to people with the most damaged livers first. People often have to wait up to 2 years for a new liver.
Awesome day, lots people, got to spend it with my sis (reason i'm here), however no coffee stations and FRIGGIN COLD!
Such a special day! Thank to Travis, Don, Brittany, Annemarie, Joy & Joanne for walking with me yesterday. It was a fun and chilled out day. It was my pleasure to meet Brian Parsons who is advocating for extended caregiver benefits and research funding matching from the Government.
The Ottawa walk raised over $260,000 and counting. The Living Loving Laughing Walkers raised $3755 with 66 sponsors!
Researchers have determined that a copper compound known for decades may form the basis for a therapy for ALS. In humans, prior to this, no therapy for ALS has ever been discovered that could extend lifespan more than a few additional months.
Finally some hope, just how long to get from the mice to people?
Read more by clicking the button below. I have also included an article focusing on ALS from my Alma Mater McGill University.
Very much looking forward to the ALS walk tomorrow, so far I have raised $1770 and my team has raised $3555, with a total of 64 sponsors, how awesome is that! Thank you all for your support and generosity. Brittany is hosting a BBQ after the walk to celebrate, thanks Brit!
We're having another Open House this Sunday June 15th from 2 - 4pm. What a great father's day present!
Thank you to all of you who are supporting me for the ALS walk in Ottawa next Saturday June 14th! My incredible sponsors, Don flying all the way from St. Maarten, Annemarie, my lovely Kappa sister coming in from Toronto, and Brittany who is never too busy to be there for me and has offered to host a get-together at her place after the walk! There is still time if you want to sponsor me at www.walkforals.ca you can sponsor me under Carol Skinner or Living Loving Laughing Walkers (I promise you Brittany there will be no zombies that day!). You are also welcome to join my team and walk with us!
Below is what is happening in our area in terms of awareness:
June is ALS Awareness Month. It is a busy time in our region with walks, media coverage and flag raisings to raise both awareness and funds to support the ALS community. Following is an update of activities happening in our region during the month of June, with a focus on raising awareness. I will provide great detailer, pictures and updates in my next newsletter (mid summer).
Flag Raising and Proclamation – Mayor Jim Watson attended a flag raising ceremony at City Hall on June 2nd. At that time he also proclaimed the month of June to be ALS Awareness Month across Ottawa. The ALS flag will be flown at City Hall for the entire month of June – great awareness opportunity!
Rogers Daytime – Client and ALS spokesperson Brian Parsons spoke on Rogers Daytime on Thursday, June 5th, of the importance of raising awareness of ALS and increasing the Compassionate care Benefit Plan for a Caregivers of ALS clients.
Ottawa Citizen – ALS spokesperson Karen Lawrence was interviewed for a story in the Ottawa Citizen, today, June 6th. To read the article click on the following link: http://ottawacitizen.com/news/local-news/als-gene-tests-allow-woman-to-focus-and-get-in-the-race
Loblaws BBQ – Blair and Ogilvie store – Loblaws is hosting a BBQ tomorrow – Saturday, June 7th from 11:00 a.m. to 2:00 p.m. to raise awareness and funds for the ALS community. If you are in the area, please go out to Loblaws and thank store manager Alan Lawrie for his support of the ALS community and the volunteers for taking their Saturday to help raise awareness
Gatineau Garage Sale – Sister-in-law of an ALS client in the community, Sharon B. is hosting a huge garage sale at her home to raise awareness and funds for the Ottawa Walk. The sale will be held on Saturday, June 7th at 103 Bagot, Gatineau, Ontario.
Ottawa-Gatineau Walk – The walk will be held on Saturday, June 14th at the Canadian War Museum, registration is at 10 a.m and the walk begins at 11 a.m. Thank you to Brian Parsons and his family for leading out the Ottawa Walk and Brian for the incredible work he is doing in raising awareness and advocating for the ALS community.
East of Ottawa
Cornwall Walk – the Cornwall walk will be held tomorrow, Saturday, June 7th at St. Lawrence College. A free BBQ and refreshments for all participants will follow the walk. A big thank you goes out to our Lead walker Brian Tardiff and his famiy.
West of Ottawa
Almonte Walk – the Almonte walk will be held Saturday, June 14th at the Almonte Civitan Club. A free BBQ and refreshments for all participants will follow the walk. Thank you goes out to Trevor Cranney and his family for the awareness of ALS they are raising in their community.
3rd Annual John Leal Memorial Golf Tournament – Just beyond the month of June – this golf tournament is being held on Saturday, July 5th! 18 Holes, Golf Cart, full supper all included. Major sponsor is Labatt (Bud Light) again!
*****Every Person who enters the tournament has a Chance to win the Trip to HAWAII sponsored by the Petawawa Golf Club.*****
Cost will be $80 per golfer and this will include 18 holes of golfing, golf cart rental, and a great buffet supper put on by the Petawawa Golf Club. For more information click on the following link: https://m.facebook.com/events/1451831291719331. Thank you to the Leal family for their ongoing support.
In Kingston and Gananoque
Kingston Walk – The Kingston walk was held on a beautiful sunny day and was wonderfully supported by the media, Kingston City Hall and many people from the ALS community. In Kingston we are blessed with incredible support from the radio stations across the city. FM 99.9 in Gananoque also joined in to support us this year. Our walk ambassador, client Mark Maclean did a terrific job being the face of ALS for the walk. He was well supported by client and committee member, Derek Swinnard. We are also greatly supported by many businesses across the city. This year the goal of the walk was to raise $35,000 by December 31st. We have surpassed that goal already and to date have raised just under $38,000. The Mayor Mark Gerretsen attended and spoke at the walk, the town crier announced the walk and the flag was flown at City Hall. These were all great opportunities to raise awareness in the city.
Coronation Street Ping – A fun event for all Corrie Street fans is being held on June 22nd at the Kingston Brew Pub. I have attached the poster above for those wanting more information
As you might imagine, there are many people involved who make these events happen, who work on behalf of all the ALS community. Raising awareness is of vital importance in helping people understand the financial and emotional costs associated with the disease and the need for continuing to support research into a cure. Please help these individuals by sharing this information with your friends and family members and by supporting events in your community.
If you have any questions on any of the above information, please contact me.
Have a wonderful weekend!
Regional Manager, Eastern Ontario (Napanee east to the Quebec border)
Carol Jean Skinner (née Sharman)