Tyler's Hope for a Dystonia Cure
  • Tyler's Story
    • Progressional Diary
  • About Us
    • Centers of Excellence >
      • University of Florida's Norman Fixel Institute for Neurological Diseases
      • Duke Health
    • About Dystonia
    • Meet the Team
    • The Research
    • Our Leadership
    • Media Coverage
  • Events
    • Center of Excellence at Duke Health Ribbon Cutting
    • Cajun Crawfish Boil
    • Think Tank
    • The Hope Weekend
    • Season of Hope 5K/15K
    • Webinars
  • Support Us
    • Shop
    • The Hope Brew Coffee
    • Planned Giving
    • Send checks
    • Amazon Smile
    • Giving Tuesday
  • Get Involved
    • Donate Now
    • Add a Signature
    • Volunteer Registration
    • Tyler's Hope Tuesdays
    • Social Media >
      • Facebook
      • Twitter
      • Instagram
  • Latest News
  • DIPR - Dystonia International Patient Registry
  • Blog

Holidays and new battles

12/30/2014

1 Comment

 
I hope everyone had a great Holiday Season and will continue to have your dreams come true into the new year. 
I try not to tell our life story in these updates but rather focus on the struggles with Dystonia and changes we see as they arise. Tyler is doing well in school and works hard at keeping his grades up. He recently got into fishing and we have worked at figuring out how he can do this because he does not use his left arm at all. I took him to our local lake recently to try his new fishing pole out tat he got for his birthday. What a disaster that was. It was a cold and windy morning and I was not very prepared. We were winging it in order to make it happen. The trolling motor did not work and did not have a battery but we loaded the john boat and started paddling out. Each stoke I took with the oars dropped a significant amount of cold water into my lap. The weeds had grown up and the wind was blowing so it made getting around more difficult. Once we were out the wind kept blowing us back into the weeds but we were determined for Tyler to try his new rod and reel. Evidently when I bought the rod and reel the line had been n it for a while and built a memory that did not allow it to cast without back lashing. The combination of light tackle, winds, old fishing line, and Tyler casting with one arm were not good. Every cast was a struggle and when he got it to work we got caught in the weeds or the line got tangled. The frustration made us regroup to try another day. My friend Will Moore helped get Tyler set back up with a new fishing line and we are ready to do it again.
1 Comment
Carl link
5/27/2022 11:33:29 pm

Hi thannks for sharing this

Reply



Leave a Reply.

    Archives

    January 2023
    January 2021
    July 2019
    May 2018
    December 2017
    November 2017
    October 2017
    September 2017
    May 2017
    December 2016
    October 2016
    July 2016
    December 2015
    September 2015
    March 2015
    January 2015
    December 2014

    RSS Feed

Location:
13301 US Hwy 441
Alachua, FL 32615
​
(Located inside The InterMed Group's Corporate Office)

Mission Statement

Tyler's Hope Foundation was established to advance research for a cure, discover effective treatments and to promote awareness and education of DYT1 Dystonia. 

​
​501c3    20-3733312



Contact Us

  • Tyler's Story
    • Progressional Diary
  • About Us
    • Centers of Excellence >
      • University of Florida's Norman Fixel Institute for Neurological Diseases
      • Duke Health
    • About Dystonia
    • Meet the Team
    • The Research
    • Our Leadership
    • Media Coverage
  • Events
    • Center of Excellence at Duke Health Ribbon Cutting
    • Cajun Crawfish Boil
    • Think Tank
    • The Hope Weekend
    • Season of Hope 5K/15K
    • Webinars
  • Support Us
    • Shop
    • The Hope Brew Coffee
    • Planned Giving
    • Send checks
    • Amazon Smile
    • Giving Tuesday
  • Get Involved
    • Donate Now
    • Add a Signature
    • Volunteer Registration
    • Tyler's Hope Tuesdays
    • Social Media >
      • Facebook
      • Twitter
      • Instagram
  • Latest News
  • DIPR - Dystonia International Patient Registry
  • Blog