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!

1 comment:

  1. Love, Denise GaskellOctober 5, 2013 at 3:59 PM

    I am so happy to hear that things are looking up for your Dad! Whoever built the ramp is a blessing. Just to get fresh air can make a difference in a day!

    Thankfully the doctors agree to revisit the pump! I will certainly continue to keep him & your entire family in my prayers.

    I can't believe all of the generous people who have come forward to run in NY for us!! Feeling blessed & many thanks to Jen!

    Above all, you are a busy bee...accomplishing all the travels and supporting so many people, along with taking care of your own family. I really enjoyed watching your posts about all the canning you were doing!!
    I just adore you sweetheart! Your heart is special. ~ <3 ~