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It's the Great Pumpkin Charlie Brown!

10/31/2013

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Happy Halloween!

I am definitely a cat this Halloween!  I received my leopard print AFO (ankle-foot orthosis) and am practicing walking on it.  Not doing such a great job as I had a fall today.  I had it fitted yesterday and practiced walking on it.  It seemed to help me walk at a normal pace and with more confidence, probably too much as I tripped over my right foot today.  Lesson learned, I need to move with intention, yes, yes to my therapy friends, practice mindfulness!
Today was such a relief as we went for a follow-up to see Travis's cardiologist.  We were both a bit nervous as we had booked our flights and hotels for Italy, and were worried about his results.  He had an ECG and everything is normal!  The Dr said that chances of a reoccurrence were slim and that usually it would happen early, meaning he most likely would have had it by now.  He said that what Travis had (Pericarditis) is common, which surprised us as we hadn't heard of it before and the Dr said it's because it isn't as "sexy" as a heart attack!  In fact he said, if you had to come & see me, this is the best possible occasion for it!  What a way to put a positive in an extremely frightening experience!  Travis will have another follow up in 3 months time and the Doc gave his approval for Travis to drink Italian wine, cheers!  
We are busy getting ready for our trip on Monday and brought up the suitcases, only to find a big hole right through my bag!  Good thing we checked early (at least I haven't lost my organizational skills), so we went to the Bay as they had a 60% off luggage sale.  Due to the recommendation of Travis's coworker we bought a hard cased "Hayes" 4 wheel bag.  The 4 wheels are awesome, it will be so much easier for me to get around with.  Thank you Kass :)
Awesome thing for today:  Uncle Geoff flying into Venice for 1 night to spend time with Travis & I!!! 

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How it All Started

Some people were wondering when & how I first noticed symptoms.  The first symptoms I noticed were leg cramps at night in my calves.  The first time I felt that something was wrong was when Travis & I went ice skating on the canal this February for Winterlude, the South African was better at skating than the Canadian (wha????) my legs just didn't seem to work properly.  In March I tried to run and my legs wouldn't do what my brain was telling them to.  Then I noticed that I started tripping over my own feet and when I stumbled my legs would collapse.  We travelled to Namibia in April/May and I noticed that my legs wouldn't lift me up, I had to use my arms to crawl into the jeep, and I couldn't just jump from boulder to boulder when looking for cave art.  Back at work I noticed that I was shaky when filling up my tea.  During the summer I noticed that I was unsteady wearing wedges on my summer shoes and when walking across the street, I had to wait for there to be no cars, I could no longer dodge traffic!  Thank goodness I had just gotten a family Doctor this year and had a physical in July.  I told her about my symptoms and she asked me to stand on my heels and lift up my toes, I couldn't do it.  She ordered a head and back MRI, my back was fine and the head came back with hypertension in the brain so she ordered a contrast MRI and gave me a referral to a neurologist.  On September 19th I met with the neurologist who gave me an EMG and literally shocked me (my muscles) and immediately gave me the diagnosis of ALS.  He said, in fact, the hypertension of the brain was nothing to worry about, which sucks for me as I still have to live with Migraines!
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Granny

10/29/2013

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Just got back from a great visit to Bowmanville where I was completely spoiled by Wendy, Mike & Bradley.  My 93 year old Granny is incredible.  So great to see her, she keeps saying that her memory is going but she can remember more than anyone I know.  We thought it best to spare Granny the news of my diagnosis and to be honest, it was great to have a weekend with family where no one spoke of LG, what a relief!

Saw "Gravity" in Imax 3D yesterday, we were dodging space debris!  Nice for Travis & I to get out of the house on his day off and do something that feels normal.  He is feeling better after experiencing a tremendous amount of stress due to all we have been going through.  I think we are still trying to come to terms with my diagnosis, wanting to accept it so that we can hurry up, move on and live life to the fullest!

That being said, what better way to start then with a trip to Italy?  Our hotels are booked and we are busy getting ready for our trip, we leave on Monday and can't wait to get away from everything.  We still have a giant to-do list, but it is all going to have to wait until we get back!

The next few days will bring appointments, packing, & last minute prep before we take a taxi to the airport Monday.  We also booked a phone & data plan for Italy so that we can keep updating you on our blog.

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A Day Off

10/23/2013

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PictureMy new birthday Uggs
Taking a much needed rest day today after a full day of medical appointments on Monday.  I saw 5 medical professionals and Travis saw 1!

The day began with meeting "Pulmonary".  I saw a respiratory therapist who gave me many breathing and lung function tests and then I met with the Respirologist who spoke about what often happens with people living with ALS.  It seems that for now, my breathing and lung function are good.  Next we saw the Speech Pathologist who is also an expert on swallowing who showed us the foods that may be easier to eat (great that Travis is a chef and I love his soups!).  Good news is that she currently has no recommendations.  It was daunting to discuss equipment that can help people communicate without speaking, I am sooo not ready for that being someone who definitely talks too much!  After that we saw the Social Worker who recommended that we hire a lawyer to validate Travis as my Power of Attorney and to complete a will.  From there we went to our family doctor who saw both Travis & I.  Travis is still tired and vulnerable due to his heart and the doc recommended that he take it easy at work, take lots of breaks and drink lots of water.  He promised me he would but I would much prefer to have him resting at home.  I have a referral into a liver specialist as my liver enzymes have been elevated for a number of years.  Before we left we both got our flu shots for the season (for those of you who don't get it because "you never get the flu", be aware you could be a carrier and pass it on to vulnerable people like me!  Please get your flu shots!!).  After that we went to the driver's license issuing office and got my rock star parking pass!  After stopping at the pharmacy to get our medication for the trip we went home to meet with Lianne from ALS Canada who does home visits and shared how ALS Canada has a loan cupboard to loan necessary equipment and left us with an ALS manual and a recommendation to file it away until after our Italy trip!  The only member of the team I have not yet met with is the dietician, however, I did get an email from Sue our nurse whose recommendation is to eat all the food and drink we like in Italy.

Thanks to Brittany who despite such an overwhelming day, has challenged me to still find the Awesome Things in life, Monday's Awesome thing is that our flights to Italy were booked, no small thing!

Thanks for the Awesome Lunch yesterday to my friends at work.

Today's Awesome: as I'm writing this Heather's photos & video from the ALS walk just came in, check out the gallery xoxo

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Awesome Things

10/20/2013

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Thank you for all my birthday love & wishes yesterday!  I had a relaxing birthday with bubble bath & grilled calamari!  It was an emotional night for Travis & I with an abundance of sentimental birthday packages & messages from friends & family, and a tough one to come to terms with.


Thank goodness for our amazing friends Sean & Brittany who came to our place today, took over our kitchen and cooked us up delicious Pad Thai, with a decadent birthday caramel sauce cake & ice cream!  It is so great when you feel numb and can't think that people just come and do the thinking for you!  Sean offered us invaluable advice on selling our Condo (will list when we get back from Italy), and Brittany gave me an inspirational journal to record Awesome Things.  It is based on a series of books & a blog that we actually used as a directive in our art therapy groups.  Basically, no matter how scary, dark or horrible things seem, you can always find awesome things in this world.
Here are some examples:  Celebrating your pet's birthday even though they have no idea what's going on;  Eating anything from your own garden; When it feels like the lyrics to the song you're listening to were written just for you; Jumping into a huge pile of leaves!
Ooh a Beatles song just came on as I sit here typing this listening to iTunes, Awesome!!!
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Pink Lake

10/18/2013

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PictureOctober in Gatineau
As I come upon my 1 month anniversary of getting my diagnosis (tomorrow) life continues to move at the speed of light!  
The love, support and generosity of our family, friends and workplaces keeps coming at us at such a pace we cannot keep up with the thank you's! 
I was sad to miss the CMHA National Conference as I am no longer able to work and missed a presentation that I was meant to give yesterday on Art Therapy with Concurrent Disorders.  I was very lucky that my brother was able to visit me and distract me from my complete change in lifestyle!
Fall is my favourite time of year and I had the opportunity to appreciate every moment of it with my brother Keith as we hiked around Pink Lake in Gatineau Park.  Some of the stairs and trails were a little daunting but with the strong arm of my brother and a gentle pace I was able to complete the loop which just made me so happy that I can still hike!  The weather was gorgeous and views breathtaking, we stopped for a picnic at a lookout viewing the Ottawa River and also drove around Meech Lake.  We then went to pick up the new lease so Keith had an opportunity to see our new apartment and had a much needed rest going to the movies for a showing of Captain Phillips starring Tom Hanks (intense!!!).


Had a call from the ALS Society of Canada and the regional director is coming by for a home visit on Monday to let us know about some of their services.  I very much appreciate that it is a home visit due to the number of upcoming Dr's visits in the next 2 weeks before Italy.  


Wonderful that Travis's work has approved our trip so our To-Do list has grown to booking and planning the Italy trip this weekend!  So so excited as we have a beautiful Villa in Tuscany booked where our amazing friends Heather & Andy will be joining us for a week!


We are excited to see Brittany & Sean this weekend Sean is a property appraiser and has offered his services on giving us advice for selling our joint thanks guys!


Good Luck to Heather, Andy & Clem who are walking to defeat ALS on Sunday.


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A Good Day

10/15/2013

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So today we had my second visit to the ALS clinic.  I met with an occupational therapist as well as a physiotherapist.  After my first visit it was quite daunting to hear that I needed to move right away and travel right away as no one can predict what will happen in terms of my health & mobility.  Today I was much more hopeful.  I had more tests done and on a score out of 5 I mostly had 4+ and 5's on rotation, mobility & strength.  The weakest part of me are my ankles where I scored 3's.  The physiotherapist recommended an AFO which is an ankle-foot orthosis for my left foot.  What happens is that when I walk, my left ankle doesn't lift up which causes me to trip over myself and as my balance and strength are off due to ALS, I end up doing a not so pretty face plant!  The orthosis will help to keep my foot lifted when I walk.  Lorraine my physiotherapist right away introduced me to Rajiv who is an Orthotist who is in the top of his field.  He custom makes the equipment and took me in right away, I liked him immediately as he does art and loves to travel!  I was a little depressed that I already need my first piece of "equipment" but when I found out that I could choose a leopard print pattern, well, that made my day!
Lorraine also said that moving March 1st should not be a problem and that as long as I take many breaks and rest often I should be fine for Italy.
The biggest recommendation so far is to conserve energy whenever possible.  Apparently I have an energy bank that gets used up much quicker than people without ALS.  Even down to Travis opening water bottles for me before he goes to work and sitting down to get dressed.  Good news is that I don't have to work out and can eat as much as I want!
My next appointments at the ALS clinic include seeing a respirologist & respiratory therapist, a social worker (although I'm pretty sure I have a whole team at CMHA!), a speech-language pathologist (although that doesn't seem to be a problem right now) and a dietician.  Also, I will go for my AFO fittings.  It will take time to get used to walking with it, but then I will be able to walk without being afraid of falling down!  
I also will be receiving an accessibility pass for rock star parking, which stays with me to use in any car.
Today was also a good day as Travis seems to have full strength back and while we were out we got the call that we were approved for the apartment, YaY!
Travis is back to work tomorrow and will confirm with his work our trip to Italy (although we got excited today and stopped to buy Euros already) so I hope they say yes!
Looking forward to seeing Keith tomorrow.

Special shout out to Mom & Dad in New Zealand for their unwavering love & support.


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Movin on up...  to the West side...

10/11/2013

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Who gets the Post Title reference?

On the Eve of Canadian Thanksgiving weekend we have much to be blessed for.  The love & support of friends and family, the incredible journey of memories that we have shared, Travis in recovery out of hospital, and today we have found a new place to live!


Strange to go from owning back to renting, but it will be hassle free and easy.  It is completely wheelchair accessible and we will no longer have to trek up 3 flights of stairs!  We have signed the lease for a one bedroom + den (den being big enough to serve as a guest bedroom so please come & visit).  On the 8th floor corner unit in Kanata.  It is bright and open planned with a balcony & washer/dryer.  (Don it is just around the corner from Aperitivo - the shared plate dinner that we went to Canada Day weekend!)  

As it is still under construction our move in date is March 1st with the possibility of moving in sooner.  The good news is that it will be brand new & clean.  Also, we have the option to move into a 2 bedroom with stand up shower in the future should that become necessary.

It warms my heart how many of you have shared that you read my blog.  To be completely honest, sometimes it's hard to hear how wonderful our spirit is because I try to be positive when writing, but I also want to be real and don't always feel so brave.   Many times I get really scared and am truly afraid of how my body is rapidly declining.  I can no longer walk up stairs without a bannister, when I squat down I can't get up without using my arms, I can no longer cut my right hand nails and even handwriting isn't easy anymore.

That being said, I know that I am not alone and the constant words of support, love & prayers from friends & family help to lift me when I'm feeling down.
Sadly I had to cancel my Toronto trip this weekend and our planned Italy trip has been delayed, but we are taking things day by day and are still looking forward to travelling to Italy.  Although the weather may be colder, we won't have to worry about the crowds!  Special thank you to Mike & Wendy for helping us to make our Italy trip even more special xoxo.

My apologies as I have many invitations to meet up with people and I will take you all up on them, things just feel so busy!  Now that Travis is in recovery we need to sell our condo, plan our vacation to Italy, clean out & downsize our condo, both of us now have Doctors visits, and Travis is back to work next week.  My brother Keith is coming to stay with us next week and we are looking forward to seeing him.

 Again my heart is full of thanks as my loving husband is home and we have found a place to move into that we are excited about.
Kanata Lakes Apartments
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Travis is Home!

10/9/2013

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Aaaah...it is with a great sigh of relief that Travis is home from hospital.  He is on medication for the swelling of his heart & resting comfortably.  He keeps telling me that he is allowed to eat whatever he wants but I don't know about that!

Good news is that we may have found a lovely place to live, and are almost ready to begin the process of selling our condo.  Other good news is that our Italy trip is still on, just may be postponed by a few weeks.  

Shout out to my parents who have gone home to give Trav & I quiet resting time.  They really took care of us and have gone above & beyond supporting us in every way.




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Things That Make You Go Hmmmm...

10/7/2013

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Hello Again,

Well...where to begin?  I am holding on to the above quote, when there are no words, turn to Winnie the Pooh!

Last week Travis was ill with what we thought was stomach flu.  After going to the pharmacy, and then later to the walk in clinic where they sent him home with again "just the flu, give it time", it turns out I had to take him to the Emergency room Saturday morning due to painful symptoms.  After several hours & blood tests the doctor told me that he had an "episode" with his heart and would need to be admitted.  Travis was transferred to the Heart Institute at The Ottawa Hospital where he remains today.  The cardiologist believes that Travis has an inflammation of his heart due to Infection.  We are still waiting to hear if it is viral or bacterial, however, he did eat a homemade hamburger from Sobeys the day before his symptoms began, and as it turns out Sobeys has had a recall of many of their beef products.  Today the cardiologist said that the good news is that there is no damage to his heart although it is still swollen & painful.  He is administering antibiotics and hopefully Travis will be discharged in a few days where he needs plenty of R & R.  It will be up to me to do the cooking for a change!

Don't you think he could have found a better way to distract me from my issues?  

As for me, I had my first visit to the ALS clinic today at The Ottawa Hospital.  There have been far too many hospital visits over the past little while to my liking!  The staff were great and my parents were with me.  The doctor shared that the course & progression varies from person to person and that although there are averages, there is no way of knowing what my timeline and degenerative progression will be.  There have been those who have "plateaued" with symptoms meaning the progression pauses for a time, and those who have declined rapidly.  There are some who have been able to walk in the end and those who have been able to speak and those who have lost all voluntary muscle control.  She stated that those who are well prepared seem to handle things better and of course to live life to the fullest as we all should.
She did confirm that it would be best if we moved as soon as possible.  I will continue to attend the ALS clinic as they have a whole team of staff for me to meet.

Right now we are taking it day by day as we need Trav to have a strong & healthy heart before we can make any future plans.

These are trying times...

Still we feel the love, support & prayers of friends and family.  One beautiful example is on the link I have added to the events page of Heather & Andy's Hudson Valley Walk to Defeat ALS.
Yet another is a wonderful event being planned by our friends Danny from CMHA and Mark from the Brookstreet Hotel and their wives, to help out Travis & I.

There are so many others to thank and believe me we will be taking you all up on your offers of support!



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2 Weeks Later...

10/3/2013

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In the past 2 weeks I was diagnosed with ALS, had to stop working permanently, have found out that we need to move (accessibility issues), are planning a trip to Italy, sold our second car, Travis has been sent a notice for jury duty and now he has the stomach flu.  Hmmmmm amazing what life throws at you.  Question is what do we throw back?

I am very grateful for the outpouring of love, prayers, support & invitations from our family & friends.
My parents are now with us for the week and have been helping us out.  If you know them they are in go go go planning mode!

I will be visiting the ALS clinic for the first time on Monday for a physical with the doctor.  Later that week I will go back to see an occupational therapist to help with "equipment" I might need for Italy.  They told me I should use a wheelchair for the airport as the travel will tire me out but I want to be walking for as long as I can!!!  I will go back to the clinic on October 21 for what the nurse tells me will be a day of being told things "I don't want to hear" , how inspirational!  Well, I'm going to go to Italy the next day so what better way to dissociate, deny, distract, delay etc. etc. with the therapy speak.

So I forgot to mention that I don't read blogs, and haven't ever written one before so I apologize if this is not what you expected!  I figured that I would just do what I do which is to talk to much and say whatever it is that is on my mind!

Peace Out!
xo



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10 Year Anniversary

10/1/2013

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Travis & I spent our 10 year (4 year married) anniversary on Sunday at Beckta yum yum!  I had Tuna Tataki app and Halibut and Trav had sweetbreads app & Duck.  We stayed in a hotel downtown and had a day off from LG (new code word for taking a break from the illness LG=Lou Gehrig).


Parents coming to visit today for a week.

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I was too full to order desert, so they brought biscotti on a plate, I thought it was cute but Trav thought it was lacking...
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    Author

    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

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carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com