Sunday, October 27, 2013

NY Bound!!!!!

So this Saturday I will be leaving and heading out to go to cheer on team Dystance4Dystonia at the New York Marathon! This is so exciting in so many ways! First off, we have an amazing team that will be there and I am so proud to be a part of something that has done an amazing job of raising funds and awareness for a disorder that is still so unheard of! Another reason I am excited is that I will be vising New York for the first time ever! I cannot tell you how excited I am about this trip! The Lord has absolutely blessed me to be able to have this opportunity and has blessed me with the means and ability to make the trip! Lastly I am excited because I will be able to do this trip and report back to my friends and family in Alabama next week at their meeting how amazing the trip was! I will be reporting back to my dad who is up and about, getting stronger by the minute, didn't have the greatest results from the Baclofen pump but still moving forward, dad. I am proud to say that he is doing great, his heart and mind are in great places, the Lord is helping he and my mom continue to navigate the quirks of a new normal, and his determination is strong.

I hope that this finds you all well, with the Lord on your side helping you see a perspective in life that you wouldn't have seen before and knowing that there are going to be people running in the NY marathon next week for YOU!!!

Stay tuned for lots of pictures and fun stories from New York!

Saturday, October 5, 2013

Moving forward

So lately things have been doing great for dad and his Dystonia (knock on wood!!!). He has finally gotten a deck and ramp put outside the back door and he has really been able to enjoy that and get some fresh air on his own while mom is at work! He and mom have finally established a new form of 'normal' and they have settled in to their life and routine. Dad continues to increase his strength every day and that is nice.

"So what is next, if anything" i have been asked a lot lately. On October 15, dad will return to Birmingham to have another Baclofen Pump Trial Injection. The last injection that was done proved to have minimal results yet absolutely no negative results and yet it was deemed 'ineffective'. Because of this, dad had a long conversation with his neuro as well as a consult with a DBS neurosurgeon who all recommended that they re-hash the Baclofen pump, and re-try it! We are quite pleased with this decision and are looking forward to the appointment on the 15th.

We continue to be positive about the results of the trial injection along with continuing to be confident in every day is a new day and a day that dad can increase his strength and stamina.

Also, don't forget that Jen Devore is going to be running in the ING NY Marathon in honor of dad and all others who have Dystonia and cannot run themselves. If you are so inclined to make a donation, even if small, to the Dystonia Medical Research Foundation to help her reach her goal of $2500 and run with Team Dystance4Dystonia, go here:

We will continue to post and keep you up to date on the trial injection and as always, keep sharing Dystonia with those you know, continue to keep your head up no matter what your difficulties are, and continue to keep dad in your prayers for strength and courage during this journey!