Thursday, 28 August 2014

Ice Bucket List - by Mike Sands

In the Christmas movie Elf, Santa Claus is seen stranded in Central Park, New York. The motor on his sleigh breaks down and Buddy the elf attempts to fix it. As Buddy works on the sleigh, Santa explains to Buddy that in the good old days he would never have this problem because his sleigh was powered by the spirit of Christmas. 

Buddy’s girlfriend convinces a crowd to join her in singing Christmas carols. The group’s singing is broadcasted nationwide and soon everyone is singing, which raises the spirit of christmas to new heights. Santa’s sleigh is soon seen soaring in the sky.

I had my first symptoms of ALS four years ago this month. Over the past four years I have lost the ability to walk, talk, move most of my body and swallow properly; in essence every muscle in my body has stopped working or is on it’s way to that result. 

It’s understandable for anyone in these circumstances to be in low spirits. As I experience my body deteriorating on a daily basis I look for things to raise my spirits and the recent ALS Ice Bucket Challenge has done this. The money raised is great but what’s even more important is that the challenge is a sign that society is in our corner, ready to fight this disease with us arm in arm. 

Right now with my elevated spirits, I think I could guide Santa’s sleigh clear around the world.

It took Mike a few day to write this blog post...Ice Buck List. Below are pictures of him working on the piece, one letter at a time on his communication device, the DynaVox. His neck muscles don't last long, so his window of time to write is very limited. 

Mike's blog post's Fried Chicken Bucket List, My "R" Rated Blog and Hawaii 5-Old are the most read posts on ALS With Courage. My favourite is Ahoy Matey...and now this one! Check them out!






Friday, 22 August 2014

Pouring Buckets

They say when it rains it pours and that’s exactly what’s been happening around here lately. It’s been pouring buckets for the last few weeks, but before I say anything about the Ice Bucket Craze for ALS, I’m going to back things up to last Saturday.

I was spending a lot of time with Erin who was recovering from her hip replacement surgery, but I had come home for a little while to see Mike…I was so thankful Aileen and Pat were here for the week making it possible for me to go back and forth.

I had just left the house and was heading back to Erin’s when I got a call from my mom. I had left my parents a message earlier asking if they had heard back from the doctor regarding my dad’s recent blood test results. 

My dad had been to the doctor a few days before at the prompting of some friends who thought his skin looked a little yellow. I noticed his colour was off too, kind of like a spray tan gone bad. My dad has never had a spray tan - he’s probably never heard of a spray tan, so maybe I should have said something.

Anyway, my mom returned my call to tell me they had heard back from the doctor about the blood work and that the doctor sent my dad straight to the hospital because something wasn’t right and they wanted to do more tests. 

So then I found myself at the 7-11 by the hospital picking up snacks and a puzzle book for my dad…I felt like I was dreaming. Only a half an hour earlier, I was suctioning the back of Mike’s throat and a few hours before that, I was doing Erin’s laundry and helping her with her mobility exercises and a week before that I was sitting beside my dad out in the back yard with the rest of the family listening to him recall stories from his all-time favourite trip to Paraguay.

My dad has lots of interesting and exciting stories about his travels. I tell him he should write a book one day. He says he will when he retires from his missionary work…but he also says he’s never going to retire.

If you ask him about this particular trip to Paraguay, he reminds you again it is his very favourite. It was a trip to connect with his parent’s past and learn about the history of his ancestors and meet relatives he never knew. 

His parents, along with a large Mennonite community from Manitoba followed their hopes and dreams to a place they were told was a land of milk and honey. This was in the late1920s before my dad was born.

The milk and honey turned out to be Typhoid Fever and many members of the group died, including my dad’s aunt and sister. My grandmother was so devastated and very sick herself, she just wanted to go home. So back to Manitoba they went and started again from scratch.

My dad’s eyes light up when he talks about traveling on the beautiful Paraguayan River and visiting the land his parent’s tried to build a life on. He tells you about seeing the spot his baby sister was laid to rest, along with his aunt. He tells about the connections he made with the relatives still there, and he particularly loves to talk about the ride he took by train from Port of Casados to the Mennonite colonies.

The first thought that came to my mind when I heard my dad was in the hospital was this visit in the back yard the week prior and the feeling I got while I listened to this story I have heard many times before…the feeling was a lovely, peaceful, feeling. I just relaxed and listened and loved how excited he was to tell about it again…and yes, I wondered about his weird tan.

The weird tan was a symptom and the CT Scan revealed a tumour in his pancreas and a biopsy revealed cancer. Wow, it was a quite a blow for sure and like they say, when it rains it pours and sometimes it pours buckets…even during the most sunny month of the year.

While we waited for test results to see if the cancer had spread, we of course prayed and hoped for the best. While we prayed and hoped for the best, another prayer was being answered.

This is what I said about the recent ALS fundraiser phenomenon in an article I wrote for iVillage, a Corus Entertainment property and women’s lifestyle website based in Toronto:

“Recently, Lou Gehrig’s Disease has been in the spotlight with the viral “Ice Bucket Challenge” fundraiser -- a movement to raise awareness and funds for ALS.

I’ve been watching from the sidelines and feel like I’m cheering the underdog on to victory. In a matter of a few weeks, ALS quickly inundated our news feeds. Pro athletes, musicians, politicians, big name celebrities and others are getting in on it, including Oprah and Bill Gates. I particularly liked Charlie Sheen’s video on Monday -- instead of dumping a bucket of ice water on his head, he dumped a bucket of cash -- $10,000.

ALS gets some much-needed and well-deserved attention and I think that’s great. Finally people are hearing about it, awareness and funds are being raised and our hope for a cure has been renewed. And it puts a smile on my husband's face when he hears, ‘This one's for you’.”

I was honoured to be asked by Russell, an editor or iVillage to give my opinion on the Ice Bucket Challenge. He said he had come across my blog and was interested in my writing and our lives with ALS. The article was well received and shared on the OWN Canada (Oprah Winfrey), W Network and CNT Network Facebook pages along with many others.

So needless to say, it’s been pouring buckets…literally, and this is where we are at today: Erin in recovering well from her hip surgery and she is almost off the pain medication which has taken a bit of a toll on her stomach. It looks like my dad’s cancer is contained and he will have surgery as soon as possible to remove the tumour. And regarding the Ice Bucket Challenge, millions of dollars have been raised and perhaps even better than that, more people are becoming aware of this devastating disease. Mike’s response spelled out in a quiet whisper;  i-s-n-t  t-h-i-s  g-r-e-a-t. 

To read my article on the iVillage website, go to: http://www.ivillage.ca/health/als-ice-bucket-challenge-nadine-sands-mike-disease

                                                   My dad in hospital last week

Erin, pre op

Erin, a few days after surgery

Fully rely on God

Monday, 4 August 2014

His Brains, My Biceps

The following is the start of a blog post I never finished from a few months ago…it’s a little dark. I’m okay now…things have a way of turning around:

I’ve been procrastinating for a while. I don’t want to write this blog post because everyone will know that I’m not as strong as I look; I’m not as strong as everyone thinks I am. I’m weak and thankfully God is strong and that’s the only reason I am where I am. I have definitely imagined myself in other places, but by God’s grace, I’m in this place…I’m in the palm of His hand.

I just thought I was dealing with a little bit of mental fatigue but it’s more than that. I call myself crazy sometimes, but my mind is just a little mixed up. I stare at the three toothbrushes and can’t decide which one is mine. I know its purple but sometimes it takes me a while to determine which one is purple…I think I’m losing it. It’s a bunch of stuff: fatigue, burn out, maybe depression. It’s the first time in my life I have ever thought, “What’s the point?”

There was more, but you get the drift. Those feelings didn’t last that long - about two months. But on a regular basis, I am mentally drained…I forget stuff all the time and I get a little mixed up. I often tell Mike that between the two of us, we make one great person…with his brains and my biceps (and the rest of my body) we really function well. Anyway, I didn’t tell anyone I definitely wasn’t functioning well during those couple of months, but my sister kept asking if I was okay and Erin was encouraging me to get away. 

I kept saying I was fine and I told Erin I’d go away for a day or two when Aunt Pat came…that was around April or the beginning of May. Pat was coming sometime in June. When she confirmed she was coming the last weekend in June, I asked Nathan to stay over night on the Saturday of that weekend. I knew between our two sisters and the kids and Mike’s regular home care support people, he would be well taken care of…even still, it’s really hard to leave him.

When I heard the workshop I was interested in attending was happening that weekend, I signed up. It was called “Inspire A Book” - a two day intensive for potential authors wanting to gain knowledge about writing and publishing a book. I was really excited about the workshop, but not about leaving Mike.

Leaving Mike for a whole day or more is agony, but not having a day away every once in a while is painful too. It’s the greatest internal tug of war I’m sure I’ll ever know. 

I’m going away again tomorrow for a couple of days. Erin is having hip replacement surgery tomorrow, so of course I will be with her for the day and I will spend the night with her at the UBC Hospital. Pat, Aileen and Sheila (Mike’s sisters and mum) are coming to help and with the help of my family as well, Mike and Erin will both be well cared for!

The Inspire A Book workshop was great…and exhausting. At the end of the first day, Julie, author and publisher of Influence Publishing (CEO), who led the workshop took me aside and told me she wanted to publish my book and handed me some paper work - a contract. She told me to read it over with Mike and she said she was really excited about my book.

After deciding to write a book and after researching everything I could about publishing, I was a little overwhelmed and then a friend told me about ‘Influence’, a company based here in Vancouver. I looked into it and thought it was perfect for me. I sent Julie a book proposal about a month before the workshop. I kept thinking, “This is really dumb…or maybe its pretty good”…I had no idea. Anyway, she liked it and I have embarked on something really exciting…telling Mike’s story in a book…our story.

What else is exciting is Erin’s new hip. The end of a long journey and the beginning of something great. And that’s a whole other story…

“The wind really was boisterous and the waves really were high, but Peter didn’t see them at first. He didn’t consider them at all; he simply recognized his Lord, stepped out in recognition of Him, and “walked on the water.” Then he began to take those things around him into account, and instantly, down he went…If you are truly recognizing your Lord, you have no business being concerned about how and where He engineers your circumstances. The things surrounding you are real, but when you look at them you are immediately overwhelmed, and even unable to recognize Jesus. Then comes His rebuke, “. . . why did you doubt?” (Matt 14:31). Let your actual circumstances be what they may, but keep recognizing Jesus, maintaining complete reliance upon Him…You do not know when His voice will come to you, but whenever the realization of God comes, even in the faintest way imaginable, be determined to recklessly abandon yourself, surrendering everything to Him. It is only through abandonment of yourself and your circumstances that you will recognize Him.” Oswald Chambers


Me and Mike and Erin and my mom at an ultimate frisbee game last weekend cheering for Nathan and Madison and all the players

We are all hoping and praying for the best possible out-come for Erin's surgery tomorrow and a for quick and complete recovery! Amen!