Cycling against the Guillain-Barré syndrome
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
Recommend
40 
 Thumb up
72.32
 tip
 Hide
Christopher Reeve, one of my heroes, once said: "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.". Whilst I don't consider myself a hero I have persevered and endured in spite of some obstacles the last two years.

In want to share my story with you hoping that members of BGG who are currently suffering van muscle diseases or other illnesses can relate and get some strength and hope from my story.

My challenge (the Elfstedentocht) will take place on May 20th, 2013. I will let you know how it went.
Your Tags: Add tags
Popular Tags: [View All]
  • [+] Dice rolls
1. Board Game: The Game of Life [Average Rating:4.20 Overall Rank:15660]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
When looking at the board of Game of Life I was advancing quite well till March 2011. I was happily married for two years and we were the happy parents of our son Kevin, who was two years old at that time.

We lived in an apartment, but had just purchased a house, which was still under construction. During the day I was a junior civil-law notary and I had just discovered the world of boardgames.
5 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
2. Board Game: General Hospital [Average Rating:4.00 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
In the weekend of March 5 and 6 of 2011 things went bad. On saturday I started to feel ill and went to the docter and the emergence room of the hospital. I was send home, but returned on sunday only to be admitted to the ICU.

Diagnosis: Guillain- Barré Syndrome.
3 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
3. Board Game: Muscle Challenge [Average Rating:0.00 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
The Guillain-Barré syndrome is a disorder which affects the nervous system. Ascending paralysis, weakness beginning in the feet and hands and migrating towards the trunk, is the most typical symptom.

Every case of GBS is different. Some people only have weakness in their feet, others are completely paralyzed. For some people it takes weeks till they reach their worst points, for some it only takes hours.

I wasn't lucky as I had a severe case. In only a matter of hours I was almost completely paralyzed and wasn't able to breath on my own any more.
4 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
4. Board Game: Legends of the Ancient World: The Oracle's Breath [Average Rating:7.20 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
It took me seven weeks to breath on my own again. For seven weeks I was completely paralyzed. Conscious but unable to communicate with the world. Seeing all my loved ones (including my son) crying at my bed at the ICU. I guess that was the most difficult period in my life so far.

GBS cannot be cured, because they still don't know what's the exact trigger. They can only fight the symptoms with medicine. As side-effects to the medicine and being in the situation I was, I had a lot of hallucinations the first couple of weeks, I also had a high fever and multiple lung inflammations.

I learned later on that the docters had said that my change of survival was 60 percent.
3 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
5. Board Game: Road To Recovery [Average Rating:0.00 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
After 7 weeks my real road to recovery started. I was able the breath on my own again and I could move my head and my shoulders. After another 4 weeks I was send to the rehabilitation centre.

My wife in the meantime had received the key to our new house and had a lot of stuff to do besides taking care of Kevin and worrying and visiting me.
3 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
6. Board Game: Rehab: A Wild Drinking Game [Average Rating:7.50 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
I was in the rehabilitation centre for 5 months. When I got there I could only move my shoulders and a bit of my arms. When I left my arms and hands were fully functional again (although a bit less strong). When going outside I could walk short walks with a walker, inside I could walk short walk with (and sometimes even without!) crutches.

It was a difficult period. Not being able to do things yourself, learning to use a wheelchair, learning to walk again etc.
3 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
7. Board Game: Cities [Average Rating:6.41 Overall Rank:2264]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
When I was at the rehab-centre I was able to use the internet again and I asked on the Bordspelmania.eu (the Dutch boardgame community) if there were games I could play even if my hands weren't fully functional and were shaking a lot.

I got a lot of answers and support from the members there.
One of the bordspelmania (and BGG) members,
Martijn van der Vlag
Netherlands
Hengelo
flag msg tools
designer
Avatar
mbmbmbmbmb
, looked up the address of my rehab-centre and send me his copy of Cities!!
9 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
8. Board Game: Home Sweet Home [Average Rating:6.17 Overall Rank:8487]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
Seven months after I got GBS I could finally go home. As far as you could call it home, because my wife and child had moved into our new house in the meantime. It didn't feel like going home at all.

But still, being able to be with my loved ones was the greatest feeling ever! All that hard work was rewarded.

My recovery was continued at home, because I still had a long way to go.
4 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
9. Board Game: Job hunting [Average Rating:5.00 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
My recovery at home actually went pretty well for quite some time. But when I wanted to start working again (at least for two hours a week) fate struck again.

Business was going bad due to the crisis and they had decided to fire twelve employees. I was one of the twelve employees. Because I was still sick we had to go to court. The judge agreed with my former employer and for the first time in my life I was unemployed.
3 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
10. Board Game: It's Only Money The Game [Average Rating:4.00 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
Lost my job and we still had an apartment and our new house, because we couldn't get the apartment sold. Budget was extremely tight and we really started worrying about our future. Also I wasn't getting better anymore. Could this be it?

My marriage was really under pressure, but we made it through.
4 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
11. Board Game: Elfstedentocht [Average Rating:6.38 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
I started to think that I wanted to do something with the experiences I had. I wanted to inspire other GBS-patients. Show them that GBS isn't the end, but just a new beginning.

When talking about this to the Prinses Beatrixfonds (a Dutch foundation which collects money do research into all sorts of muscle diseases) the idea was born to ride the Elfstedentocht on a bike.

The Elfstedentocht is a tour throught Friesland (one of the provinces in Holland). Originally it is an ice skating tour, but we decided to join the tour on the bike.
6 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
12. Board Game: Leader 1 [Average Rating:6.99 Overall Rank:1689]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
What followed were months and months of training. Not only on the bike but also in the gym. And also I had to collect money with my initiative.

On May 20, 2013 the tour will take place. I have to ride 235 kilometers on my bike and I have 18 hours to do so. Will I be able to do this?

Only time will tell.
5 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
13. Board Game: Money! [Average Rating:6.55 Overall Rank:1441]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
Besides inspiring people I really wanted to collect a lot of money so more research could be done. Though GBS isn't fatal in most cases it's an awfull disease and more should be know about it.

On 6 months I've collected about 3.000,- euros for the Prinses Beatrixfonds. Not bad, right!
5 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
14. Board Game: Struggle [Average Rating:5.78 Overall Rank:12035]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
Every day is still a struggle for me. I still can't feel my toes and the rest of my feet hurt 24 hours a day and 7 days a week. I can't stand or walk for a long time and I get tired sooner and more extreme than other people. Besides that I can't smell things anymore.

Still haven't found a job either.

But, my apartment was sold in december 2012. So that's great. And I'm really enjoying my life. Of course I still have difficult moments when I'm sad that I can't do the things I usually did. But I could have ended up worse. I still have my wife and son and who knows, perhaps I'll get even better in the future.
3 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
15. Board Game: 6 day Bike Race [Average Rating:0.00 Unranked]
 
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
Sorry for keeping you waiting! Over two weeks ago my challenge took place. This is the bike I used:

4 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
16. Board Game: Sponsor [Average Rating:6.44 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
I was riding for the Prinses Beatrixfonds. But that wasn't the only sponsor I had. Recognize the logo??

4 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
17. Board Game: Cycling: A Fascinating Game [Average Rating:4.00 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
The condition were perfect! There was almost no wind (which is pretty rare in that part of The Netherlands) and the first 140k there wasn't any rain as well.

This is me during the course:

5 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
18. Board Game: Half-Time Football [Average Rating:4.66 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
At 140k there was a post especially for us (made possible by the Prinses Beatrix Spierfonds). The tour was going so well that I was over an hour ahead of schedule!

So instead of my loved ones waiting for me, I had to wait for them!! After 15 minutes my wife, son and parents arrived. Here I am with my boy.

5 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
19. Board Game: Finish Lines [Average Rating:5.15 Overall Rank:14098]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
After 150k it started raining, my feet were killing me and I was really beginning to feel the fatigue. Still I went on and after 11 hour, 45 minutes and 2 seconds I completed the tour!

This is me directly after finishing. A little wet, very tired and not my handsome self laugh



And a couple of minutes later I got my medal for finishing (the smaller left eye is one of the things I still have of the Guillain Barré)

5 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
20. Board Game: Sleep [Average Rating:0.00 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
I felt pretty good after finishing the tour, and still do. However it did take quite some toll on my body. For the last two weeks I've been getting extremely tired in the afternoon.

I need to lie down and when I do so, I fall asleep for one or two hours. Kind of feels like a step back in my recovery, but since I know why this is happing I don't really care. It was worth it.

I collected 3.300 euros for the foundation, which is much more than I expected.

2 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
21. Board Game: Hollywood Lives [Average Rating:7.44 Unranked]
Wesley Fechter
Netherlands
De Goorn
flag msg tools
Avatar
mbmbmbmbmb
As a thank you to all my sponsors and everyone who has supported me I made a small movie.

It shows how serious Guillain-Barré is, but on the other side it shows hope and shows that I haven't lost my sense of humor in spite of everything that has happened.

Wanted to share the movie with you as well!

3 
 Thumb up
 tip
 Hide
  • [+] Dice rolls
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
Loading... | Locked Hide Show Unlock Lock Comment     View Previous {{limitCount(numprevitems_calculated,commentParams.showcount)}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
{{error.message}}
{{comment.error.message}}
    View More Comments {{limitCount(numnextitems_calculated,commentParams.showcount)}} / {{numnextitems_calculated}} 1 « Pg. {{commentParams.pageid}} » {{data.config.endpage}}
Front Page | Welcome | Contact | Privacy Policy | Terms of Service | Advertise | Support BGG | Feeds RSS
Geekdo, BoardGameGeek, the Geekdo logo, and the BoardGameGeek logo are trademarks of BoardGameGeek, LLC.