Tag Archives: Huntington’s Disease

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

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

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

 

 

 

 

 

 

 

 

 

 

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:

20170510_200808

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.

20170510_201113

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

Walking in Support of Huntington’s Disease Research and Awareness – May 4

Today was another training day for me.  I didn’t get as many Ks in as would have liked, but still had a decent hike; 8.8 kilometers for the backpack hike and 12.85 kilometers total for the day.

As per my format, I will try and update some information about Huntington’s disease in order to build awareness as well as journal my activity in preparation for my walk across Saskatchewan this summer.

What is Huntington’s Disease (2)?

Previously, I posted that Huntington’s disease (HD) is an inherited brain disorder. The problem is in a little DNA segment known as CAG trinucleotide repeat. Here, the building blocks cytosine, adenine, and guanine (CAG) repeat 10-35 times in the normal HTT gene. In a person with Huntington’s disease, the CAG repeat in this gene is greater than 36.  If the repeat is from 36-39 a person may not develop symptoms of the disease but can still pass it on to the next generation (whose CAG repeat is likely higher). If a person inherits this gene and the repeat is over 40, it will almost always lurk around until a person is 30-50 years old and then systematically destroy the frontal lobe of the brain over the next  10 to 20 years. Early symptoms will vary depending on what part of the brain is affected and when, but the disease will always result in uncontrollable, jerky movements, total impairment, and death (prognosis is this 10-20 years after becoming symptomatic) in its advanced stages. Some people will show symptoms earlier than 30 and likewise develop symptoms after 50, but the vast majority of people with this abnormal HTT (ie. Huntington) gene will become symptomatic between ages 30 and 50. Unfortunately, the faulty gene is dominant, meaning if you inherit it, you get Huntington’s disease; there’s simply no way around it.

Very nasty stuff and it is all because of a tiny hiccup on one gene.

This video explains in more medical terminology what goes on with the Huntington gene and its effect on the brain:

Did You Know?

Huntington’s disease is named after Dr. George Huntington who published a paper on his studies of the disease in 1872. Huntington came from a family of doctors who lived in East Hampton, New York and who over generations had observed several residents of East Hampton suffering from a condition known then as “St. Vitus’s Dance.” This included Phebe Hedges who also suffered from St. Vitus’s Dance and who famously committed suicide by walking into the sea in 1806.  Huntington made the connection that this condition was passed on through generations and thereafter, the disease bore his name rather than the previous incorrect label (which actually refers to a childhood disease that produces similar bodily movements but goes away after a few months).

This Day in Training:

Distance:  8.8 kilometers walked

Backpack: 20 lbs

Temperature:  21 degrees

Conditions:  No wind but bugs were out for the first time.  I hope the mosquitoes are not like they were last summer where they basically took over the yard in mid-June.

Most listened to song on my playlist: I basically listened to two songs over and over today.

Here Without You – 3 Doors Down –  Just a beautiful classic song from 2003. Also, it is a great road song.

Tell Me Ma – Rankin Family –  This song really works when you need to pick up the pace!

Please visit my fundraising page at the Huntington Society of Canada

Walking in Support of Huntington’s Disease Research and Awareness

Starting on July 10, 2017,  I am going to walk across the province of Saskatchewan in order to raise funds and awareness for the Huntington Society of Canada.  My walk should take about three weeks and will cover about 700 kilometers. I plan on walking about 50 kilometers per day.

May is Huntington Disease Awareness month and also a time for me to step up my training.  I started in April with about 150 kilometers of walking and I want to double that in May. I also want to inform people about Huntington’s Disease

What is Huntington’s Disease?

Huntington’s disease (HD) is an inherited brain disorder. HD causes cells in parts of the brain to die: specifically the caudate, the putamen and, as the disease progresses, the cerebral cortex. As the brain cells die, a person with Huntington’s becomes less able to control movements, recall events, make decisions and control emotions. The disease leads to incapacitation and, eventually, death. There is no cure.

Huntington’s disease is a genetic disorder. The HD gene is dominant, which means that each child of a parent with HD has a 50% chance of inheriting the disease and is said to be “at-risk”. Males and females have the same risk of inheriting the disease. Huntington’s occurs in all races. Symptoms usually appear between the ages of 30 and 50, but the disease can appear in children or seniors.

Did You Know?

Famous American folk singer Woody Guthrie died of complications arising from Huntington’s Disease in 1967; the same year as Canada’s centennial.  You can read about his struggle with the disease here.

This Land is Your Land

This Day in Training:

Distance: 11 kilometers walked

Backpack: 20 lbs

Temperature: 18 degrees

Conditions:  No wind (finally!)

Most listened to song on my playlist: Today by the Smashing Pumpkins – Interesting story: I never really got the name of this band, until I lived in Cochrane, Alberta. I awoke on November 1, 1997, to find that all of the Jack-o-Lanterns on our street had been stolen and smashed on the street. Later in 2006, when teaching in Vanguard, Saskatchewan, I told this story to my Grade 12 English class on Halloween. The next morning the streets of Vanguard were littered with smashed pumpkins. Several townspeople blamed me for the incident.

I actually like this acoustic version of the song:

Please visit my fundraising page at the Huntington Society of Canada