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Jerome & I did an article & photo for ALSBC which will run in both Vancouver newspapers, the Vancouver Sun & The Province.  It will be out on September 22nd, so look for it. 

My health has been ok.  I've been noticing a cough and mentioned it to my homecare nurse a few weeks ago.  She smiled & said "no problem" & then proceded to change my tube feed stat lock??  That about sums up my speaking skills these days.  The cough is not a problem yet & I can use the bi-pap on my wheelchair now if necessary.   I'm still walking with the help of two care workers.  I'm determined to keep going as long as possible.

I have to say the most difficult part of my journey with ALS so far has been losing my ability to speak clearly.  It's really is frustrating for me & those around me.  I am getting the Vmax mounted to my powerchair on Wednesday which will make life a lot better but only when I'm in my powerchair which is now all the time except when I'm in bed or the bathroom.  Unfortunately I can no longer hold my head up without being reclined so the bathroom is particularly challenging.   My daily shower is a huge pleasure for me so I want to continue showering as long as possible.   I am very lucky to have very good home support staff & wonderful friends who mostly understand me but there have been moments.  I am trying to remember it's the disease, not my caregivers fault. 

My parents, Jerome & Gay (Jerome had a fall and broke his wrist)



My parents birthday cake.



Gay & Jerome



The 2 Friends & neighbours that ALS brought together


Sister Karen & Shelley out from Edmonton



My neice Colleen out from London, ON & my sister Kathy out from PEI



My friend Randy who had our motorcycle personalized licence plates framed



Having my beard shaved off



My brother Scott from Halifax & sister Aileen from Edmonton

What is your preference?

My sister wanted to help me in some other way besides all the time she has spent her already so she decided to hold a fundraiser for me to help me pay for night care.
The govt only supplies 4 hours of care a day, and at the moment I'm now paying people to stay overnight, and I probably will need 24 hour care.  
It never ceases to amaze me about how many wonderful people I have in my life, and how generous people are. Here is an edited version of the presentation Aileen made the night of the fundraiser.

" Thank you for coming. I wanted to speak a bit about Ian and how ALS has affected him and then I have a dvd to share with you. I wish he could be here tonight....but I guess if he was we wouldn't need to do this.
 
ALS is devastating - emotionally, physically and financially...and it is a mystery. There is no cure, there is no prevention, and we have no idea why Ian has this disease. It is a degeneration of the neurons in the brain and spinal cord, and when the neurons dies, muscle movement is lost until total paralysis is reached. Ian first noticed changes in his speech and strength in his upper body, and his emotions. Now he is able to use only one of his fingers (another mystery and gift - as he can work a remote control for his TV, lights, phone, and his motorized chair), speech is very challenging, breathing and swallowing and eating are all harder. So he is being tube fed to get his nutrition, and he eats orally when he wants and can. He essentially needs assistance with everything he does right now, so he is needing to pay people to help him at night. And he is one of the lucky ones - good insurance, good supprot, family and frineds who love him. I've been able to go out a few times and help and spend time with him. I'm learning that every moment is precious, to be mindful and present to life whatever it throws my way. Once the moment is gone, it'll never happen again. I've seen and experienced the fear, sorrow, frustration and anger, but mostly I've seen the patience and the giving, the love and laughter and the twinkle in his eyes.
Ian has spoken about learning how good and capable and brave people are and he's surrounded by these heroes and friends. I want to ask you to think of him and send him love when you can and send him $$ if you can to help ease some of his burdens and help him rest in love. I hope this DVD gives you a glimpse of this amazing, fun-loving, teddy bear of a man with the twinkle in his eyes, and who I am so proud to call my brother and friend.
Here's to Ian.

Aileen has a friend who has mouth and tongue cancer, and her friend has requested  that in lieu of  flowers please donate to Aileen's fundraiser.  Words can't describe how touched I am by this. Life is good, and all the people in my life are great.

Thank you to everyone for their loving generosity. Every morning I wake up and still smile knowing that I have such kind and considerate people in my life. It continues to give me the strength that I need to get through the day.  

St. Pauls Hosptial had a recognition tea for me in mid January which was very nice. They presented me with a lovely photograph of the hopsital and the west end.  The plaque has 23 years of service on it.

Pharmacy department



The director of pharmacy, Luciana and myself


Some of my colleagues 


Best looking women at St. Pauls by far!

The Pacific Rim curling league invited me to their annual bonspiel. To open their bonspiel, I held the broom for the honorary rock throwing. They had a draw to the button contest where the money was donated to the ALS society of BC in my honour.  I was able to enjoy a match, and  it was a really enjoyable afternoon. Thank you to everyone who helped me get there.

More pictures to follow and another update shortly. Stay tuned.