Thankful

I know, I know. I took a bit of a hiatus from blogging. Sorry about that. I was busy living my life. Finding joy in each day and making memories with my near and dear. So, I figure you might cut me some slack in the lack of blogging department. But I’m back baby!

I want everyone to know how incredibly thankful I feel. For your prayers, your warm thoughts, your texts (that I don’t always reply to), meals you lovingly prepare, the walks, the coffee dates, lunch dates, coming over to visit, just getting me out of the house, etc.I remember very clearly how busy lives can be and I appreciate everything you all do to remind me that I’m supported. I am eternally grateful.

So much has happened in this past year. I have gone on some fun trips and excursions. Parksville was visited twice with my dear friend Leanne, we shared so many laughs.
September had me floating down the Cowichan river with some dear friends and family. Dolce looked absolutely adorable in her life jacket sitting atop by tight abs. She kept sliding down the rungs of my six pack like the old school washing boards. (lol)

Dino was awarded a European Riverboat cruise for his exemplary service for the past year. In October We visited Hungary, Austria and Germany. (There were only 160 guests) on board an 8 day cruise, along the Danube river. The staff knew us by name and our butler (that’s right, I just said butler) was Imre. After talking with Imre about ALS a bit I found by lunchtime the staff were anticipating my needs in such a sweet and kind way that it melted my heart. We met some beautiful people on the cruise and feel like we have been lifelong friends with them. This past January we spent 8 days in Maui and we were upgraded to a Villa. It was so lovely to have my mom in law Raffe with us to make our holiday that much more special. Dino helped me into the ocean to ensure I wasn't swept away as my balance at the best of times was sketchy. On our flight home, I knew that this was my last big trip; my body was working very hard to keep up. My new pace was slow and not so steady.

August 20, 2017
I have been getting around town in a power wheelchair that the ALS Society of BC loaned me. They have also loaned me a quad cane which I use inside, an electric hospital bed, adjustable bedside table, raised toilet seat and a portable ramp. Oh, also an electric recliner. Dino and I had our small bathroom on the main floor reno'd. It is now a gorgeous wheelchair accessible shower and sink bathroom. I love it!
I am savouring my independence as the mobility on my left side, which just last summer was my strong side, is dwindling. I have come to realize that crunch time has arrived and I'd better muster up my patience and courage for the next leg of this journey.
Thank-you to all of my friends, family and all the lovely souls I meet every day. What a beautiful life I have❤❤❤

G.F. Strong Centre

Every 4 months Dino and I head to Vancouver to the ALS Centre at G.F. Strong Rehab. It's the largest rehabilitation hospital in B.C. It is there that I meet with my team of ALS Specialists. I see a Neurologist, an RN, a Physio Therapist and a Social Worker. The whole process usually takes about 3 hours. We had our puppy Dolce with us so were there a little longer this time; Dr.'s and nurses kept popping into the room to meet this adorable puppy they were hearing about.

At the end of February, I had my third appointment. I left feeling encouraged and with some helpful tips and things to work on. Here is the breakdown of that appointment:

Neurologist

I was asked if my symptoms had progressed. Unfortunately, I had to say yes.

Do you know that feeling when your eye twitches for no reason? I have that feeling from my right hand, all up my right arm and shoulder and down the right side of the trunk of my body. It pretty much doesn't go away. I get some twitching in my right leg and have also developed weakness in my right foot and toes. I've also noticed that my right leg and knee just feel less strong in general. If I squat down to get something I need to hold onto something to get myself back up to a standing position. There is also this strange occurrence when I am quite tired or hungry where my legs will shake uncontrollably; usually just one but occasionally both. It doesn't happen all that often, but when it does, it feels bizarre. My fatigue is still very present and most days I just don't have a tonne of energy.

Nurse

It was a general check in and the main concern was whether or not I was having any changes in my breathing. Which I was pleased to say was not an issue. (I also see a Respirologist in Victoria).


Physiotherapist

She made reference to the neurologist that my right fingers were shaking a bit. I'm still not sure if there was any significance to that. I was shown and sent home with 6 different exercises to help maintain my range of motion. I am to complete them 3 times a day with 5 reps each. For example, the fingers on my right hand now naturally stay in a curled in position. I am to bend them back and hold them there for a few seconds to try and prevent them from curling so much.

I also purchased walking poles. You know, the ones you see the hard core walkers with. Well, look out world, Lisa is about to make that pole a hip and cool trend that all the cool kids will be talking about. Haha, I crack myself up. I actually only need to use one. It's to take the pressure off my left knee and hip which has been compensating due to the decreased strength on my right side. For now I will take it to Italy with me (so excited!) and on longer walks. It was either a walking pole or a cane, and I just don't feel like I'm a cane sort of gal.

Social Worker

In a nut shell, we brushed on family issues (which anyone with two teenagers might have) and we started to plan my funeral. This is encouraged and I'm glad I am starting to make known my wishes. This is something we will all have to think about sooner or later. I will plan and pay for mine now so that when I die at 99 it's easy button for everyone!

I am back for my next G.F. appointment on July 5th. That feels like a ways away but as we all know, it'll be here before we know it. Shorts, sandles, sunnies....I can hardly wait.

Paying It Forward

This Friday I will be boarding a plane with my family to go on a dream vacation to Italy. The number one item on my bucket list. I am very grateful and appreciative to all the people who helped make this possible. It was through a GoFundMe fundraising campaign where a majority of the money was raised.

I have been asked by a friend to share her cousins story, and I'm happy to do that. She lives here in Victoria and is embarking on a challenge that is hard for most people to fathom. 

Generosity and kindness was shown to me, and I hope the same is shown to her. So if you wouldn't mind taking a few minutes to read her story and consider donating I would really appreciate it. 

I'm just trying to pay it forward....

Click here to see how you can spread some kindness today. 

Dolce

I have wanted a dog for about 5 years now. Ever since I thought the kids were old enough to appreciate a pet, as I wanted them to have a little friend. It was all about them. We have loved other people's dogs, but with all of us out of the house during the day, it just didn't feel right.

Then I got diagnosed with ALS, and everything changed. I didn't want the dog for the kids anymore (though I still thought it would bring them joy), I wanted one for me. After needing to leave work in October and being home full time by myself, I got lonely. The house was too quiet, no young kids needing my attention, and not enough energy to get done all the things I really wanted to do.

I knew a puppy would be a lot of work, but I needed to be needed. I needed a reason to wake up, I needed a purpose in the simplest way. I know my kids still need me, but with teenagers, it's a different kind of need.

When we talked about is as a family Sophia was not keen on getting a dog. For the most part Matteo was indifferent, but was not interested in walking a "little dog". And Dino, well, he wasn't excited about the idea but he was willing to do it for me. So the decision was made, we were getting a puppy, and I was so excited!

I knew I would need a small dog, one that I could keep up with and manage with one hand. I needed a dog I could take care of on my own, I didn't want to put any more on Dino or the kids. I had wanted a lab or retriever (cause seriously, who doesn't?) but that was going to prove to be too much dog for me. Plus I really didn't want all the hair and smell that comes with a big dog. A friend has a Yorkie that I love; and when she told me the breeder she got hers from had puppies for sale I jumped at the chance.

I contacted the breeder in North Vancouver and she sent me pictures of the litter. To my surprise, the puppies didn't look like Yorkies, I hadn't realized they were bred with a Maltese. They were just the cutest things. In fact, the first time I saw Dolce, whom we eventually picked, she had a little pink bow in her hair. She was soooooo cute.

Dolce's mom is a 6lb Maltese, her dad, a 3 lb Yorkie. A few days after Christmas, we hopped on the ferry to Vancouver to pick up the newest member of our family. An 8 week old Morkie puppy weighing in at 1.4 lbs. She was just a white ball of super soft fluff that filled us all with love upon first meeting her. Dolce means sweet in Italian; and no other name could better describe this little cherub of ours.

That ferry ride home was filled with love. She was so very tiny, she was hard to hold onto. We all felt so protective over her. Sophia held her the entire ferry crossing. And when we got home and introduced her to Matteo he couldn't get over how small she was. It was love at first sight for all of us.

That first night she whimpered and cried a bit, but we would pick her up and hold her and then she would fall back asleep. She slept a lot those early days but we are now two months in and boy has she changed.

She is weighing in these days at a hefty 2.5 lbs and is so much more feisty. I know that she was meant to be our dog. She is sweet and cuddly for me and yet still playful with the kids. She's very smart and trainable. She seems to sense when I am having a tired day. On those days, she cuddles up with me to sleep and her play time is much more gentle; her puppy bites are softer, like she knows I am not up for a full bore play.

She is a low maintenance loving dog. She makes people happy. Everyone wants to pet her, to hold her. She loves long walks on the beach and a glass of merlot from time to time. Just kidding. Making sure you are still paying attention.

I've never been a dog owner before. I get it now. I get how people treat them like their first borns, and gush over them and want to show them off and bombard people with way too many pictures. Speaking of which, that is just what I am about to do. So, with no further adieu. This is Dolce...

Ferry ride home

Early day snuggles

Dino is the friendly giant next to her. 

And the selfies begin...

                                                 

My sous chef

I mean seriously?!

Checking Louie out.
(Oh yeah, we have a budgie too. Kinda taking a back seat these days.) 

Told you she liked long walk on the beach. 

"But Mom...I don't want to take a nap."

Louie and Dolce getting better acquainted. 

.

My Timeline

Flashback to January one year ago:
I started experiencing difficulty holding a pen and writing. It was as though I couldn't get the right grip on the pen, it was constantly slipping out and I would have to readjust. After writing a dozen or so words, I noticed my handwriting was starting to look like a scribbled mess. I would take a little break from writing and then would resume. My best description to people is to think about being outside in the cold for a long time and then coming inside and trying to write something. That feeling that your hands are clumsy and thick. That is how my right had felt. Clumsy and thick.

Mid-February:
I went to see my family physician. After examining my had she was unable to pinpoint anything specific. I questioned if it might be a pinched nerve. Dino gets that sometimes and has similar symptoms, though his is accompanied by tingling and numbness, where mine wasn't. I was referred to a Neurologist and directed to have my eyes tested.

Feb 20:
I had an eye exam that included a 3D test and the results showed that my eyes were healthy. I was relieved.

March 10:
First appointment with a Neurologist. A nerve conduction study and electromyography tests were performed on my arms and hands. The results were inconclusive and I was advised to return in 6 months or sooner if symptoms persisted. I was referred for an MRI.

March 15:
I have an MRI of my spine from my shoulders up.

May 12:
I have my first ever acupuncture treatment and am advised to return the following week for a second treatment.

May 19:
After my second treatment my practitioner suggests I go back to my G.P. and ask to have a referral for an MRI of my brain and to see a specialist about being tested for ALS. I question why she is making this suggestion and am told that my right hand had less muscle than my left. Later that day Dino and I discussed what had happened, were scared of the possibilities, and started to research my symptoms on the Internet. BAD idea. I started to wonder if I had MS.

May 20:
I return to see my G.P. Although she didn't hesitate to refer me back to the Neurologist she explained that in med school she was taught that ALS typically starts from the feet up. She also shared that my MRI results came back normal.

June 17:
I'm back at the Neurologists, sharing the information from my acupuncture sessions. He repeated the nerve conduction study and electromyography tests as well as some reflex tests. Again, he felt the results were inconclusive. I was referred to a colleague of his in Vancouver for a second opinion.

June 22:
Back in my G.P.'s office explaining that my left elbow and forearm have been quite sore for about a month. I was told it was tennis elbow. I stopped using weights when I did my Jazzercise classes and it started to feel a lot better. She read me the consultation letter from the Neurologist. There was no mention of him suspecting ALS. He did note the slight reduction in muscle response in my left arm though. (It was my right hand that I was noticing symptoms in.) She put a referral in for an MRI of my brain.

July 15: (Matteo's 13th Birthday)
We head to Vancouver for the day as a family. I am seeing another Neurologist for a second opinion. She too goes through reflex tests, nerve conduction studies and electromyography tests on both arms. She is suspicious of ALS and would like me to come back to see a colleague of hers. We do not share her suspicion with the kids. In Italy, 13 is considered a lucky number; although I am not superstitious, I admit that I was holding out that the superstition was true.

July 23:
We are camping with friends outside of Vancouver. Dino and I drive in to see the other Neurologist (essentially a third opinion). I go through all the same tests but she also tests my face and tongue for strength. We are asked to speak with her in her office. She informs us that all the test results point to ALS. We ask what the prognosis is and are told 3-5 years. We ask what we can do and are told there is no treatment for ALS.

I remember sobbing, and repeatedly saying, "But I'm healthy! I hardly ever drink, I've never done drugs (not that I'm proud of this, I've just never tried drugs), I go to Jazzercise 4-5 times a week, and I'm in the best shape of my life, and I know I could eat better as I love chocolate and sweets. This doesn't seem right. I've tried to be a good person, be a good mom, I just don't understand how this could be happening?" The doctor told us that ALS strikes like lightening, there are no known causes.

My mind was a dust devil. My thoughts were a mess. I couldn't catch my breath.

We were left with a phone number to get support. She informed me that there was a support group in Victoria and that I would need to come back in October. Before leaving I hugged her and thanked her. What the hell. I'm a good Canadian and it wasn't her fault I'd been struck by lightening.

We walked out of the office into a gorgeous hot and sunny summer day. I wondered how any of this could be true. They must have made a mistake. I instantly felt as though time was ticking away. I looked at Dino and said I wanted a dog. He said okay.

A Night To Remember

If you’re wondering who's writing this it’s me, Lisa Ruffolo, and I have ALS. Well, truth be told a girlfriend of mine is helping me compile my thoughts and do the typing. My right hand is already like a stubborn two year old throwing a tantrum in the aisle at the grocery store. I’ve rolled my eyed at it and am choosing to carry on anyways.

This post in the first entry on my blog (can't believe I just wrote on my blog...who da thunk?). The first glimpse into what it feels like to me to live with ALS. I’m not sure what I plan to blog about or where this will take me; but if you’re interested, I hope you’ll tag along for the ride. Now on to the story at hand...

A Night To Remember

Usually before a big event I am nervous; the butterflies are present. That night was different. I realized that if someone didn’t like something about me, I really didn’t care anymore. I reminded myself that everyone who would be in attendance was going because they cared about me, cared about my family. No one would be looking for something wrong with me, a reason to make me seem not good enough.

Nerves aside, all I felt was excitement. A good friend had done my make-up, and I had gone to the hairdresser that morning and sat in that chair for a few hours. I recall chit chatting, but all the while lost in thought about how the night would unfold.

All day long I fought the fatigue. Desperately wanting a nap and yet not wanting to ruin all the time I had spent getting my hair done. I still managed to engage in several redundant conversations in my mind. “You’re tired just go lay your head down gently on the pillow….Don’t fall for that one Lisa, you know you'll wake up looking like a rat has made a nest in your fine hair!” So I fought that battle and won. The hours crept by, the excitement growing as the sun dipped out of sight.

I had some idea what the night was going to look like, but really didn’t know a lot of the details. This was like nothing we had done before. We were just to show up and enjoy ourselves. And that we did. 

As I walked into the lobby I saw familiar faces, friendly faces, loving faces. I started hugging, started talking. Eventually I was asked to move away from the door, there were so many people waiting to get into the room that we had created a barricade to the entrance. The line-up of people waiting to see me, to hug me, was so long that it felt like a procession line at a wedding. Yet I wasn’t in a wedding dress, no bouquet in my hand. I had looked down and saw the beautiful dress that my husband had bought me for the occasion. That night I would always remember.

Parts of the evening are a complete blur. I couldn’t finish a conversation before seeing someone else, receiving yet another hug, starting a new conversation and then finding someone else’s warm arms wrapped around me. It just kept happening; I couldn’t seem to hug people fast enough. I wanted to be gracious; I wanted to show my appreciation. Everyone had taken time out to come, to support, and to spread love.

If I had to summarize the overall feeling of the night it would be an abundance of love. But along with love, people showed true kindness, empathy, and compassion. All those incredible feelings that fill you with indescribable warmth. Those moments in life that cannot truly be described, they need to be felt, experienced. It was beautiful. It was magical.  I didn’t want the night to end.

Out of the 340 tickets sold I would estimate that I knew 80% of the people. Everyone else were friends and family of people who knew and loved me. The tickets sold out in no time, an additional room needing to be booked. Weeks before the Gala there were still so many people who had wanted to attend but couldn’t get a ticket. The outpouring of support was overwhelming.

One of the most touching moments for me involved the middle schoolers walking past me to play their instruments. Looking at their faces, they seemed so young; they were the age of my children. I was hoping that Sophia and Matteo were feeling what my husband and I were feeling. That never before had we been in a room filled with so much love, support, and friendship. In fact, we didn’t really know that level of love was all around us. We realize now that it had been there all along, but we had never needed to tap into it like this before.

We’ve been so lucky that up until now our lives have been blessed with health. We’ve had control over our circumstances, even if things haven’t always gone our way. The issues being manageable, tolerable, and nothing to put on our friends. Like most people, we didn’t share the day to day stressors that all families face. But there comes a time in life when we realize that we do need support, we do need to tap into our resources. And that time for me is now.

My only wish is that I could have stopped time. Could have had all the conversations I wanted to. Could have ensured that all the hugs I wanted to deliver had been received. That the night would have never ended. That we could have danced until our feet begged us to stop. I didn’t even finish my cake…and I love cake!!

The Gala event was put on so that Dino (my husband), Sophia (my daughter aged 15), and Matteo (my son aged 13) and I could take a dream vacation that we have talked about since the children were born. Dino being Italian and having relatives there. I had been asked shortly after being diagnosed this past July what the number one item on my bucket list was. Without hesitation I said it was a trip to Italy. An amazing group of women from my jazzercise group decided to take on that challenge and ensure that I would be crossing this bucket list item off in no time. 

The total fundraising from the night including ticket sales, the Go Fund Me account, and the donations received at Coast Capital bank totalled $35,070.92. If you ask me, that is a whole lot of love right there. My number one item on my bucket list, this dream vacation to Italy (which has been booked for March!) is already so memorable, and we haven’t even boarded the plane yet.

I want everyone who had a hand in making that dream night a reality to know the incredible impact it had on us, on me. From my friends on the committee, to all the donations for the silent auction and cake contest, to all those who bought tickets, who donated, who showed up, who wanted to show up but couldn’t get a ticket, and to those who had us in their thoughts that night. To everyone who made the Gala happen. I am thankful from the bottom of my heart.

Here are just a few pictures from the night:

That's me, Lisa.
That smile doesn't due the level of happiness I felt justice. 

One of the hundreds of hugs I received and gave that night. 

A small sampling of the silent auction donations. 

Dino and myself.
Can you tell he's Italian?!

One of the many cakes donated. 

The italian theme was not taken lightly.
I mean, look at that cake!!

The room was packed full of love and support. 

Surrounded by good friends. 

I wanted to dance the night away...