Tag Archives: Huntington Disease

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:

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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

 

 

 

 

 

 

 

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

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