Author Archives: gshwaga

Time For A Break!

Well, so far I have walked 454 kilometres across the province of Saskatchewan in order to raise awareness and funds for Huntington Disease and the Huntington Society of Canada.

Saturday night (July 22) I made it to the town of Wadena, Saskatchewan. It looks like I am going to turn south now at Wadena and pick up the trail on the Yellowhead Highway heading east towards Yorkton and then the Manitoba border. July 23 is a rest day at my mom’s place in Yorkton, Saskatchewan.  I will go back and pick up my trail Monday, July 24th.

Here are the towns I have covered so far:

Macklin, Evesham, Unity, Wilkie, Landis, Biggar, Perdue, Asquith, Saskatoon, Humboldt, Muenster, Engelfeld, Watson, Quill Lake, Clair, Wadena

Tales From the Road:

  1.  Seth and I were having lunch in Unity, when the waitress asked what I was up to.  I told her that I was walking across Saskatchewan in order to raise awareness about Huntington Disease.  As she went back into the kitchen we could hear her tell the cooking staff: “Hey that guy is running across Canada for Parkinson’s”
  2. As I was about to cross the 25th street bridge in Saskatoon, I came across a young man who had just been arrested.  The Saskatoon police were not messing around.  The young man was handcuffed, with his hands behind his back and was told that he was off to jail.  When he asked why he was being arrested, the police informed him simply and sternly that he had been “jaywalking.”  I did not record the incident, nor did I jaywalk for the rest of the tour through Saskatoon.
  3. About 1 kilometer west of Wadena, I met another walker headed west.  He asked if he could use my cell phone to call his mom and let her know that he was fine.  I dialed the number but did not get a dial tone, nor did the telephone ring on the other end. I then texted the number instead and typed: “This is Shaleco (the boy’s name). I am fine and am just west of Wadena, SK.  I just met another traveller who has given me water and energy bars.  All is well.” As we parted, ways, I asked where Shaleco was headed.  He said “Alberta”. I said: “That’s interesting, I’m headed for Manitoba.” A few minutes later, I dialed the number again and actually spoke with Shaleco’s mom.  I told her what happened and where I had last seen her son.  She informed me that she had the RCMP looking for him. Then, as I was just about to finish the conversation, she said: “You spelled his name wrong.”

Many Thanks to:

1. The hundreds of people who have sponsored me so far.  I am over my 10 and then 15000 dollar goal.  Thank you so much!

2.  My event sponsors: Knight Nissan, Bickner Trucking, Sterling Truck and Trailer, Hornoi Leasing, Full Line Ag, The Village of Vanguard, Steelview Oilfield Services, and Speedy Creek Signs.  My plan was to backpack across this province on my own.  It was not a good a good plan.  Best case scenario is I would have failed, worst case is I would have died.  These sponsors have ensured that I have a pace vehicle to keep me safe on the road, coaching to keep my body going, and rest at night and nutrition along the way. Thanks!

By the way, our pace vehicle is a Nissan Rouge.  It is very comfortable, handles well, and is overall a very nice vehicle to drive (just ask Val).  Here are the specs in case you are interested in checking one out. 

3.  John Bickner at Bickner Trucking.  He made the above sponsorship (and this campaign) possible.

4.  My pace drivers Seth, Jessalyn and my wife Valerie.  You can imagine that walking across the province at 5km per hour is boring.  Driving a vehicle at that speed isn’t any better.

5.  People that have walked with me; Dan, Jessalyn, Gordon, Amber, Brittney, Laurie, Janet and Lorne, Betty, Loyd, Brian, Carrie, Kassie, Wendy, and Alvina.  It does pass the time having people to walk with.

Scenes From Saskatchewan:

Here is a link to some pictures that I have taken along the way.

Playlist:

I haven’t been able to listen to as much music on the road as I would have liked.  There is just too much traffic.  In addition, after we had the Facebook block on our live feed because Val was playing XM radio, I thought if my pace car driver can’t have music then I can’t either.

Here is one of my favourite songs from my absolute favourite band growing up.

Fight the Good Fight – Triumph

Hailing from Mississauga, Ontario, Triumph was a power rock trio in the mid 1970s and 1980s.  They were my favourite band, and I must have listened to their records a million times. In fact, growing up, I wanted to be one of two guys, Rik Emmett of Triumph or Darryl Sittler of the Toronto Maple Leafs.

This is Rik Emmett, one of my two boyhood heros.  His skills on the guitar are like no other. Originally, I wanted to name my first son, “Rik Emmett Shwaga.” It was decided.  There was no other option.  That is until the time of birth when my wife informed me “His name will be Seth.”

Image result for rik emmett

 

My other boyhood hero was Darryl Sittler.  He was the captain and best hockey player on my favourite team the Toronto Maple leafs.  Sometimes when the game would end on Saturday night, I could hardly bear the thought that I would have to wait a whole week to see Darryl Sittler and the Leafs again. Even then, often you would wait an entire week only to find out CBC was airing the Montreal Canadiens or Vancouver Canucks  game.  That was unbearable!

Image result for darryl sittler

Until this day, when I am at a teacher’s conference or convention or any place where people don’t know who I am and we are required to have name tags, I will put Rik Emmett or Darryl Sittler on my tag and just pretend to be them all day long. They are still my boyhood heroes.

Links:

Here is a link to my fundraising page. 

Please also check out the Huntington Society of Canada’s website.  It has a ton of information and articles.

Follow me on Twitter @gshwaga – Please like or retweet if you can. It gets my message to more people that way.

Follow me on Facebook: Greg Shwaga or my event page @GregsHDwalkSK

Follow me here at www.igslearn.com

On the Road!

So I have hit the road, walking across Saskatchewan in in order to raise research funds and awareness for the Huntington Society of Canada.  I have covered 120 km in three days and today I had to break from my intended itinerary in order to do this interview:

http://regina.ctvnews.ca/video?clipId=1166513

I am planning on starting today at 4:00 p.m. from just outside of Landis, SK. and arriving in Biggar tomorrow.  I likely don’t get to Saskatoon until Sunday now. I’ll have to post pictures once I have better internet access.

Here are two songs that I listened to a lot on the road:

I met a man on the road from Winnipeg named Dan. That reminded me of The Guess Who and this song:

 

That song reminded me that Pearl Jam covered this song when they played in Saskatoon and made me think of this song:

 

 

 

Vanguard, Saskatchewan – Home Base!

Before I set out to see this province on my hike for Huntington Disease awareness and research, I thought I would like to profile my hometown of Vanguard, Saskatchewan by doing a little walking tour.

We are celebrating Canada’s 150 this Saturday, July 8.  There will be a social, dance, inflatable battle rings, and a huge fireworks display.

Here is where I am from:

 

Links:

Here is a link to my fundraising page. 

Please also check out the Huntington Society of Canada’s website.  It has a ton of information and articles.

Follow me on Twitter @gshwaga – Please like or retweet if you can. It gets my message to more people that way.

Follow me on Facebook: Greg Shwaga or my event page @GregsHDwalkSK

Packing!

Water, t-shirts, shorts, jogging shoes, sunscreen, bug spray and that is about it!  That is my list for my 676-kilometre hike across the province of Saskatchewan in my attempt to raise awareness of and funding for Huntington Disease research.  I have published my itinerary here and as expected it will already have to be adjusted. I have an interview scheduled with CTV on July 13, as well as a potential media opportunity in Moose Jaw later that morning.

The pace has definitely picked up here in the last couple of days.  My best friend John Bickner at Bickner Trucking Ltd. in Vanguard, SK was concerned about my safety and well-being while on the road.  He made more than a few calls and managed to secure a few sponsors so that I would be looked after in terms of accommodations and nutrition. So far, Bickner Trucking Ltd. in Vanguard, Sterling Truck and Trailer Sales Ltd. in Regina, The Village of Vanguard, and Full Line Ag Ltd. in Swift Current have come together in order to help me across the province (I have one more to come, but will release that information shortly).   Level Coaching has put together a comprehensive nutrition plan for me to follow in order to minimize the chances of me basically self-destructing on the side of the highway in the middle of the province (let’s face it in my mind I still feel anywhere from 7-17 years old, but at 46 I’m a bit of a geezer).

I also have had some other help along the way.  Sport Chek in Swift Current set me up with some jogging shoes and athletic socks, Swift Current Pharmasave and Walmart Swift Current provided me with bottled water for the trip and Et Cetera in the Swift Current Mall even gave me a microwave steamer so that I can raffle it off to all my Twitter and Facebook followers and retweeters.

Thanks everyone for helping me out!

In addition, thank you to everyone who has been donating to the Huntington Society of Canada online and through me.  I set my goal of 10,000 dollars, and I am basically there already and still four days away from starting the walk. Thank you so much!

I also have some readers tuning in from places like India, Finland, The UK and the United States.  Welcome!  I should tell you about Saskatchewan:

My home province of Saskatchewan is a trapezoid in the middle of Canada. We are one of only two landlocked provinces in our country (though we have about 100,000 lakes most of which nobody ever sees).   We are slightly larger than the country of France in area but with 65 times fewer people.  Yes, that means we only have about 1 million people in our entire province.  Our 1 million people though, produce a whole lot of food (if you have eaten bread, margarine, or lentils, you’ve likely had a taste of Saskatchewan), oil and gas (unless you are from the United States though, you likely haven’t had our oil.  We only get to sell it to ourselves or the United States – long story.) and Uranium (if your electricity is generated by a nuclear reactor, the uranium used to power it came from us). Also, potash; if your farmers put fertilizer on their fields it probably came from about 3500 feet below the surface of my province. We are kind of the Saudi Arabi of potash.

We produce a lot of hockey players too!

What is Huntington Disease(7)?

One aspect of the disease that I haven’t touched on at all, is the Juvenile form of Huntington Disease or Juvenile HD. I was contacted today by someone that has been affected by this form of Huntington Disease and this manifestation of HD is very sad indeed.

About 10% percent of HD cases are of the juvenile form.  Whereas most HD victims remain asymptomatic until around 30-50 years of age, the juvenile incarnation hits kids in their teens (plus or minus a few years) and it hits them hard.  Generally speaking, if a teen starts showing symptoms of HD, they won’t see 30 years of age.  Misdiagnosis is more likely here too, because a child may show signs before the parent from which they inherited the disease. Symptoms are similar to adult-onset HD with less likelihood of chorea (dance movements) but more likelihood of epileptic seizures.

Here is a video that explains Juvenile HD:

Featured Town:

Wilkie SK

Wilkie’s population is about 1300 people.  It is named after Daniel Robert Wilkie who was president of the Imperial Bank of Canada from 1906-1914.  From what I can tell, all of the streets in Wilkie are named after their founder or after the Imperial Bank. The Imperial Bank was the forerunner of the Canadian Imperial Bank of Commerce.  I started my first bank account with the CIBC because it was the “Bank of the (Toronto) Blue Jays” and because of this commercial:

I should be in Wilkie July 11.

Training Update:

I have effectively shut myself down until Monday.  I did go out for a walk with my wife and some friends yesterday that lasted for about 9 kilometres. I took this picture:

20170704_210659

Interesting note:  I lived in British Columbia for six years.  My son was born there.  B.C. was great.  I even wrote about it here. My born and raised B.C. friends would say they could never be without their mountains.  I always felt like the mountains were in the way!

Links:

Here is a link to my fundraising page. 

Please also check out the Huntington Society of Canada’s website.  It has a ton of information and articles.

Follow me on Twitter @gshwaga – Please like or retweet if you can. It gets my message to more people that way.

Follow me on Facebook: Greg Shwaga or my event page @GregsHDwalkSK

Follow me here at www.igslearn.com

 

 

 

 

 

 

 

Travel Plans!

I have worked out a tentative schedule for my walk across the province of Saskatchewan in support of Huntington Disease research and awareness.  I totally expect the schedule to be ruined by noon of the first day but if all goes as planned (which it never does) I should be on the road from July 10-27.  Here is the breakdown:

July 9 – Sunday

Leave from my hometown of Vanguard SK.  Drive to Macklin.

July 10 – Monday

7:00 a.m. – Leave the Alberta/Saskatchewan border.

8:00 a.m. – Arrive in Macklin SK – The rest of the towns are all in Saskatchewan.

10:30 a.m. – Arrive in Evesham 

I won`t see any other towns today.

Total Kilometres:  44

July 11 – Tuesday

7:00 a.m. start

11:00 a.m. – Arrive in Unity

7:30 p.m. – Arrive in Wilkie

Total Kilometres:  49

July 12 – Wednesday

6:00 a.m. start

I won`t see any new towns today. I will be between Wilkie and Biggar

Total Kilometres : 45

July 13 – Thursday

6:00 a.m. start

11:30 a.m. – Arrive in Biggar

No new towns.

Total Kilometres: 42

July 14 – Friday

6:00 a.m. start

8:30 a.m. – Arrive in Perdue

4:00 p.m. Arrive in Asquith

Total Kilometres: 45

July 15 – Saturday

7:00 a.m. – start

1:00 p.m. – Arrive in Saskatoon

Total Kilometres: 25

July 16 – Sunday

Recovery Day in Saskatoon

July 17 – Monday

6:00 a.m. start

No towns on the road between Saskatoon and Humboldt.

Total Kilometres: 50

July 18 – Tuesday

6:00 a.m. start

No towns on the road today.

Total Kilometres: 50

July 19 – Wednesday

6:00 a.m. start

9:00 a.m. – Arrive in Humboldt

12:00 noon – Arrive in Muenster

3:00 p.m. – Arrive in St. Gregor

5:30 p.m. – Arrive in Englefeld

Total Kilometres: 47

July 20 – Thursday

6:00 a.m. start

8:00 a.m. – Arrive in Watson

3:00 p.m. Arrive in Quill Lake

6:00 p.m. – Arrive in Clair

Total Kilometres: 44

July 21 – Friday

6:00 a.m. start

11:30 a.m. – Arrive in Wadena

3:30 p.m. – Arrive in Kylemore

6:00 p.m. – Arrive in Kuroki

Total Kilometres: 43

July 22 – Saturday

8:00 a.m. start

10:00 a.m. – Arrive in Margo

1:00 p.m. – Arrive in Invermay

Total Kilometres: 23

July 23 – Sunday

Rest in Yorkton

July 24 – Monday

6:00 a.m. start

8:30 a.m. – Arrive in Rama

12:30 p.m. – Arrive in Buchanan

6:30 – p.m. – Arrive at Good Spirit Lake

Total Kilometres:  50

July 25 – Tuesday

6:00 a.m. start

3:00 p.m. – Arrive in Springside

6:30 p.m. – Arrive in White Spruce

Total Kilometres – 42

July 26 – Wednesday

7:00 a.m. start

9:30 a.m. – Arrive in Yorkton

12:30 p.m. – Arrive in Tonkin

Total Kilometres: 45

July 27 – Thursday

7:00 a.m. start

9:30 a.m. – Arrive in Wroxton

4:00 p.m. – Jump in the Lake of the Prairies! (Saskatchewan/Manitoba border)

Total Kilometres: 32

Spend the evening concluding my trip in Esterhazy, SK

Total Kilometres: 676

 

 

 

 

 

 

 

 

 

 

Getting Closer!

I am 10 days away from starting my walk across Saskatchewan!  My school year is all wrapped up.  It is always a little sad at the end of the year knowing that another year is gone but there is also a sense of accomplishment and fulfilment.

My campaign is going very well.  I am over 70% towards my stated goal and still haven’t started the walk yet.  Also, there have been a couple of interesting developments. Some folks are concerned about my safety and well-being and as a result, have been working towards potential sponsorship so that I have a pilot vehicle, places to rest at night, and proper nutrition.  I will have a formal announcement with details once it is all in place, but isn’t that cool?

What is Huntington Disease (6)?

Quick Facts:

  1.  1 in 7000 people in Canada has HD.
  2.  1 in 5500 Canadians is at risk of developing HD.
  3.  1 in 1000 Canadians is affected by HD in some way.
  4. A direct genetic test to determine if an individual has inherited the HD gene was developed in 1993.  Most people at risk do not get tested.
  5. Huntington Disease is an autosomal dominant inheritance.  This means if you inherit the HD gene you will get the disease.

 

Featured Town:

Unity, SK

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Unity is a town with a population of 2389 people. It started as a small settlement in 1904 and was the subject of a 2001 award-winning play about the 1918 flu pandemic.   It is 59 kilometres from Macklin, meaning that I will likely be in Unity on July 11.

Check here for a list of things to do in Unity. It is a good list.

Training Update:

I have started to limit the kilometres that I am putting on in training.  I might as well save them for July 10.

One very large upside of just walking is being able to see the countryside.  I used to run the same routes when I would be training for running events or just jogging, but I never enjoyed the scenery as much when I ran as opposed to when I now walk. Here are some pictures:

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Did You Know:

At my height (5 feet, 11 inches) on flat terrain, the horizon will be about 5 kilometres away. Therefore, in order to make it across Saskatchewan along my route, I will have to “walk to the horizon” about 140 times.

Most Listened to Song on My Playlist:

Nothing Compares – Third Day

I am going back to Third Day for this one.  For some songs, you immediately want to pick up a guitar and play along.  This is one of those songs.

 

 

 

 

I did, in fact, pick up the guitar to play this song, but instead of playing the original A, E, F#m chord progression, I switched to G, D, and Em (In fact my computer even knows I don’t like playing any other chords so it just automatically transposes for me now.) As I started playing, it reminded me of this 1998 Semisonic song.

 

 

 

 

 

Please visit my fundraising page at the Huntington Society of Canada.

You can also follow me on Twitter (@gshwaga). Please retweet so that my campaign updates get in front of as many people as possible.

You can also follow my event on Facebook:  @Greg’s Walk for Huntington Disease

 

 

 

Three Weeks!

Three weeks,  that is all I have left before setting out on my 700-kilometre hike across Saskatchewan in order to raise funds and awareness for the Huntington Society of Canada and Huntington Disease research.

It is has been some time since my last post.  Life has a way taking you on rabbit trails before allowing you back on the path again.  My last post was before the May long weekend.  That weekend I took my son to play in his club volleyball national tournament in Calgary, Alberta.  I went to sleep that Friday night and woke up with a sprained ankle in the morning.  Apparently, although no believes me, spraining your ankle while sleeping is actually a “thing; ” Yet something else to look forward to in your forties.

I was also involved in two graduations, one at my own school in Vanguard on the 26th of May and then my daughter graduated from Athol Murray College of Notre Dame on June 17th.  I am proud of Vanguard Community School and our graduating class and I am proud of my “little girl” Jessalyn.

BMG_9231  20170617_153913

I did have to rest for about 10 days while my ankle healed, but eventually, I did get back out on the road and have since put in a few hikes. June has been just too crazy though and I have not been able to put on as many kilometres as I would have liked.  I will have to train as I walk somewhat, starting on July 10.

My school had a surprise for me on June 14.  Some of the senior boys asked if I could go out to the woodshop with them while they built a box for another class. I thought it was a strange request but went anyways.  While out in the shop I was called on the intercom to come to the gym.  I thought a student had gotten hurt.  When I got to the gym, the entire school was waiting for me.  Without me knowing, the students and staff had planned their own little “walk” and were sitting in the gym with backpacks on waiting for me to join them.  In total, they also raised nearly 2000 dollars for my campaign.  This, plus donations that I have already received, has put me over halfway to my goal and I’m still three weeks to the starting line.  Cool!

What is Huntington Disease (5)?

You will often hear the analogy that Huntington Disease is like having ALS, Parkinson’s Disease, and Alzheimer’s at the same time.  This is mostly correct but doesn’t help much unless you know what those diseases are, and what attributes of those diseases can be found in a person that suffers from Huntington Disease. Here is the breakdown:

The full name for ALS is Amyotrophic Lateral Sclerosis. When you see that word trophic, it comes from the Greek trophikos for food or nourishment.  Sclerosis means hardening or stiffening (dying).  In the case of ALS, neurons in the brain responsible for voluntary muscle movement die. With nothing controlling them anymore, the muscles stiffen and eventually waste away.    This is the common element with HD.  Although not caused by the same neuron malfunction,  in late stage HD, you will see muscle wasting to the point where HD patients in the latter stage of their life look extremely thin, fragile, and malnourished.

Parkinson’s Disease happens when brain cells stop producing dopamine. Dopamine is necessary to carry signals between nerves in the brain.  Without it, people start to exhibit the hallmark signs of Parkinson’s: tremors, rigidity of muscles and impaired balance. Again but for different reasons, someone with HD will begin to display these same characteristics. This is the chorea or “dance” movements associated with HD.

Alzheimer’s or more specifically dementia caused by Alzheimer’s is also very HD like.  This is where an individual with HD suffers from a host of cognitive and emotional issues; everything from memory loss to forgetfulness to irritability.

So, yes, in a sense Huntington Disease can be described as having ALS, Alzheimer’s and Parkinson’s all at once but I would even go further than that.  It is more like a person starts with Alzheimer’s (or dementia or even schizophrenia), then develops Parkinson’s, and then finishes off with ALS. You could even use another analogy and say that HD is like someone having a very prolonged and slow developing case of the dreaded Creutzfeldt–Jakob disease (people with this disease often die within six months, whereas an individual with HD can have symptoms for 20 years or more).

All of these diseases are just plain and simple nasty!

Featured Town:

Evesham, SK

The next place I walk through after Macklin is a hamlet called Evesham.  I looked it up and it is a hamlet of 35 people. It used to be a village up until the year 2000. That is about all I could find on Evesham. Here is a picture of a church in Evesham:

Image result for evesham SK

I will look to see if it still there when passing through.

This Day in Training:

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It was a great day for hiking.  The temperature was a perfect 21 degrees and there were no bugs.  My ankle held up well as I went about 8 kilometres.  On this one stretch of highway, this one hawk keeps diving at me. At first, I didn’t think anything of it, but she definitely does not want me around!

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Most Listened to Song on My Playlist:

Cry Out to Jesus – Third Day

Upon hearing Third Day’s music, they became my third favourite band (Triumph and The Tragically Hip will always be my favourites). Third Day’s music always makes me feel better.  Their lyrics mean so much, and their sound is like a Christian version of Lynyrd Skynyrd. I can’t imagine a scenario where you feel worse after listening to this song.

 

Please Visit My Page at the Huntington Society of Canada

 

 

 

 

 

 

 

Nirvana- 25 km – My Walk for Huntington’s Disease Research and Awareness

I put on 25 more kilometres since my last post.  The hikes are getting easier and I am feeling more confident that I can reach my goal of hiking 50 kilometres per day and 700 kilometres across the province of Saskatchewan in July for Huntington’s Disease research and awareness.

Today, my hike became official.  The Huntington Society of Canada has helped me with planning and promotional materials.  Check these out:

My Poster:

Gregs_SK_Walk_Poster_2017

Brochure:

Greg_SK_Walk_Brochure_000Greg_SK_Walk_Brochure_001

Sponsorship Letter:

Greg SK Walk Sponsorship Letter (1)

Canada 150 –  I will be visiting some great places this summer of Canada’s 150th year so I will use this opportunity to promote some of our wonderful Saskatchewan towns and cities.

Macklin

Macklin is a town of about 1500 people and is most famous for the game of Bunnock. The object of this game is to throw the ankle bone of a horse towards a row of someone else’s ankle bones. It is kind of like playing horseshoes or lawn bowling.

This Day in Training:

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Distance: 25 Kilometres

Temperature: 15 Degrees

Backpack: 20 lbs

Conditions:  Cool and Windy

Most Listened to Song on My Playlist:

Come as You Are – Nirvana

My favourite Nirvana song going back to 1991.  You had to live the early 90s to understand the impact Nirvana had on the music scene.  The early 90s was a time when people in North America lacked optimism.  The excess of the 1980s gave way to a 1990s bust.  Canada and Saskatchewan, in particular, was hit hard. Unemployment hit 11.2% (When the percentage is that high, it feels as though there are NO jobs). Saskatchewan was bankrupt and had to be bailed out by the Federal government.  Heck, you couldn’t even protest because our Prime Minister might choke you, so society turned sad and dark and bands started writing sad and dark music.  Nirvana was the first and best sad and dark band.

(Canada in the 1990s!)

 

 

Please visit my fundraising page at the Huntington Society of Canada

Walking in Support of Huntington’s Disease Research and Awareness – May 10

I had a close call today.  I was hiking down a dirt road west of Vanguard with my headphones on and head down.  Expecting no traffic, I wasn’t particularly paying attention when I looked up to see this:

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That tail is up and he is pointed at me! I think another if I had walked another 10 feet, I would have been in for a major surprise!

I did an exit stage left, walked well around and left him behind me.

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Disaster averted.

What is Huntington’s Disease (4)?

Huntington’s Disease used to be known Huntington Chorea.   The two names are synonymous. Chorea is Greek for dance.  It is the sporadic, random and never-ending movements that have become symbolic of the disease although, as I mentioned in a previous post, cognitive and behavioural symptoms appear much earlier than the Chorea stage. Here is an example:

Chorea is also used as a name in other movement disorder diseases 

Did You Know?

People often used to be arrested for Huntington’s Disease!  Police would see the Chorea and assume the person was drunk.  More than few sufferers of Huntington’s Disease have had to spend a night in a drunk tank but because of the disease, not alcohol.  It happened to American folk legend Woody Guthrie.  It even happened in Nova Scotia in 2014!  

This Day in Training:

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Distance: 8 kilometres

Conditions:  Absolutely a perfect day for hiking!  Mosquitoes are starting to appear though. Saskatchewan is pretty!

Most listened to song on my playlist:

If It Makes You Happy – Sheryl Crow

Back to 1996 again for this Sheryl Crow song.  Is it grunge?  Is it country?  Country grunge? Good song to listen to when walking. GCD

Walking in Support of Huntington’s Disease Research and Awareness – May 8

Another 16 kilometres hiked since the last time I posted.  Yesterday was cut short by rain. I know this summer, it won’t matter if it is rain or shine, but at this point, I don’t want to push it and risk not being able to train. I was hoping to get in 20 kilometres before the rain hit. Today I went 10 kilometres after school.  It was an easy hike but I do get a sore back after about 8k on the road from carrying the backpack.

Again, my plan is to walk 700 kilometers across Saskatchewan this summer beginning on July 10. In the meantime, I am tracking my training days and writing about HD.

What is Huntington’s Disease (3)?

Today, I want to write a little about the early symptoms of this disease, since this an area of increased focus lately.  In the past, an HD diagnosis usually coincided with the onset of chorea (Greek for dance).  Chorea is the name for the random and sporadic movement that plagues someone with HD.  From this point on, the disease is fairly predictable in terms of its progress towards eventual death. The pre-diagnosis stage of the disease, however, is often the most misunderstood and most difficult stage of the disease to deal with for HD sufferers and the people closest to them.  The reason is that you don’t see it coming; especially if you haven’t been tested for the HD positive gene or if you didn’t know that HD was in your family history.

We now know that up to 10 and sometimes even 20 years before the physical manifestation of the disease, subtle changes in the HD positive individual start to occur. This happens because the malfunction in the HTT gene starts to destroy the brain. As you likely know, different parts of the brain control a multitude of different cognitive, personality, physical and emotional functions, so prediagnosis HD symptoms will vary from individual to individual depending on what part of the brain starts to die first. Generally speaking, however, most prediagnosis HD individuals will notice (or more likely people around them will notice) a slight but progressive decrease in cognition accompanied by personality changes.

Decreased attention span, short-term memory lapses and an inability to learn new tasks are all hallmarks of early onset HD.  In addition, procedural knowledge starts to deteriorate a little later, but still relatively early in one’s battle with Huntington’s disease. Our brain stores two types of knowledge, declarative and procedural.  Declarative knowledge is factual and dependent upon our ability to process information and later recall it.  Procedural knowledge is simply our knowledge of how to do something. This includes everything from tying our shoes to driving a car or doing long division. Now imagine getting into your car one day and not remembering how to get it into “drive” or, imagine waking up one morning and not having a clue how to get dressed.  That piece of the brain responsible for that particular procedure just disappeared. This happens in an HD-positive individual and usually well before any diagnosis is made.

Perhaps even more unsettling is the personality change that usually happens in a prediagnosis HD individual.  Hair trigger temper, high anxiety, depression, irritability, apathy, impulsiveness; any of these or all of them can plague someone with HD in the prediagnosis stage. Once again, imagine having a certain predictable personality for 40 years and then, one episode at a time, changing into someone completely different. Imagine the effect on the people around you as they “wonder what the heck is going on?”

All of this happens in a person with Huntington’s disease and this is before they have even had a diagnosis!

Did You Know?

Just last week on May 4, Bill S201 received Royal Assent making Canada the LAST of the G7 nations to protect its citizens from genetic discrimination. In March,  Justin Trudeau ordered his backbenchers to vote against Bill S201 but in an act of defiance they ended up voting against their own Liberal government and with the Conservatives and NDP to pass Bill S201 into law.

This Day in Training:

Distance:  10 kilometers hiked; 16 over the last two days.

Backpack: 20 lbs

Temperature:  17 degrees

Conditions:  Rain on Sunday.  No rain or wind on Monday.

Most listened to song on my playlist:

Yer Not the Ocean – The Tragically Hip –  Even people that don’t “get” The Hip still like this 2006 song.  It is my favourite song to play drums to.

Please visit my fundraising page at the Huntington Society of Canada