Saturday, September 12, 2009

We're Still Here and Still Working

It has been nearly two months since the blog was last updated, and I apologize. I am not sure how the time passed so quickly but I guess we've been really busy. Although the summer has gone well, it also has been hard. Paul still struggles with talking, walking, and use of his right arm. Not to mention that he is burnt out on being at Pate. Everyone is great there but the every-dayness of it has gotten to him, especially because he hasn't seen the progress that he had hoped for and expected. So, while he will continue there because they are good, he needs to keep working, and insurance continues to pay, I am always looking for alternative therapy options that will help him.

I recently applied for Paul to participate in an intensive aphasia therapy program at the Rehabilitation Institute of Chicago, which is the No. 1 rehabilitation hospital in the United States. In speaking with the director of the program though, we determined that the program is not appropriate for Paul's needs. The aphasia program focuses mainly on language comprehensive. Paul does not have a problem comprehending language or retrieving language, his speech deficit is apraxia, which means he has trouble coordinating his muscles to make purposeful movements - in this case it is saying the words. He has no trouble comprehending and his master of the English language shows when he is using the letterboard and the Dynavox. Although Paul will not be participating in the aphasia program in Chicago, the director of the aphasia program thought that Paul might be a likely candidate to participate in other therapies that RIC offers so we are looking into that. As well, she passed on some names of researchers and therapists here in the Dallas area that I have contacted. So, there are options and opportunities out there, we are working on finding some that fit Paul's needs. I have to say though, everyone that I have talked to has been very kind, interested, and generous in sharing any information that could help Paul.

Several months ago, an acquaintance of Paul's, Michael Langley, contacted us to suggest that we call a therapist that he knows named Lisa Ann McCall, who has more of body/balance philosophy than traditional physical therapies. I finally contacted her over the summer and she has been coming to the house to work with Paul a couple of days a week and she has been great. She is very optimistic, energetic, and upbeat and has been teaching us ways that Paul can easily do therapy at home and incorporate it into our everyday lives. For example, we now have Paul holding a ping-pong paddle with his right hand and hitting ping-pong balls. He can easily do this while he is sitting on the couch. It is often a family affair, with me tossing the ping-pong balls to Paul, who hits them and Buzz has his own paddle and tries to then hit Paul's ball, which can go anywhere in the living room. The ping-pong balls end up all over the place but it is fun and something we can do as a family. Lisa Ann also has us making sure that Paul always is doing something therapeutic, even if he is doing it while he is watching TV. When he watches golf, we try to make him hold a golf club, which can be difficult with his right hand, and practice putting from a sitting position. She just believes the motion of doing something, especially something his brain is so familiar with (golf) that it will trigger the neurons to create more pathways. She also has suggested some different leg exercises and stretches that will help the spasiticity. We always both feel very optimistic after sessions with Lisa Ann. (Michael, thank you for the suggestion.)

As for his talking, Paul can say words more spontaneously and can repeat phrases but we still rely primarily on the letterboard and Dynavox. In fact, we are pushing him to use the Dynavox more because 1) it has word prediction so the more he practices using that, the faster he will be able to communicate, 2) he can sometimes say a word more easily if he sees it written down first, and 3) if he can't say it by reading, it is always good for him to repeat it once he has heard the Dynavox say it. The Dynavox also gives him some independence in that he can spell out what he wants to communicate without having to have someone there to spell out each word with him, as he does on the letterboard. I am all for that, because it gives both of us more freedom.

Paul still is not walking on his own, although we continue to see progress, albeit small but still progress. It is very frustrating for him because that has been his main focus. His therapists have suggested that, while he should continue working on walking and always have that as one of his goals, in the meantime, he also needs to become more independent while he is in the wheelchair. We all set our sights on the walking so, in the meantime, I've been doing more for Paul than I should and now have to push him to do more everyday things on his own at the house.

Buzz is now back in school and I am working part-time at ClubCorp, where I used to work prior to Paul's accident. So far, it is working out great for me because I can work mostly from home. However, since ClubCorp is located right across LBJ from Pate, on the days that I do go to the office, I can easily go by Pate on the way home and get Paul.

Well, I think that is enough for now. Once again, I am making a commitment to update the blog more often so, as Willie says, it doesn't turn into me writing a book each time.

Thank you all for your support and for following Paul's recovery.


annie said...

wow. big sigh. that's big stuff patty.

so... big hugs to you guys.

Anonymous said...

Patty - Thanks for the update - you guys are working so hard - keep it up Paul! Patty, Paul is so lucky to have you as his wife. You keep finding new therapies and avenues for him to move forward in- I'm so proud of you and happy to hear about the progress. I'll see you soon - Jennifer Mc

kyle farley said...

While attempting to simply fathom the gravity & frustration that Paul is dealing with, I think back a ways......& remember all the dynamic and vibrant tendencies he displayed every moment that I encountered him in... the cerebral intensity and wit... the agility and speed he showed me one night in a foot race to catch the last Dallas Greyhound back to Denton(He wasted me by an entire city block)the fearlessness in layin' down the art!
Suddenly Patty... very simple recognition for Old kritikal...It's all that he honed and all that he mastered and all that he achieved and all that he discovered in you & buzz.... These are the places where he derives superhuman strength to deal with his less than perfect golf swing! His strengths will always remain an entire city block ahead of me, while I attempt to pant the words "Wait For Me, Paul...I'm Coming"! His preparations for something he didn't know was coming, are very apparent to me as i let my thoughts of him rest ..... as he has achieved far more in the last year & 2 months than anything I could ever even imagine getting through!

Jason said...

sounds great! Thanks for the update, Patty. Give my best to Paul.

Anonymous said...

Very thoughtfull post on alternative therapy. It should be very much helpfull

Karim - Positive thinking

Kim Baron said...

Patty - I am so inspired by your tireless effort and unwavering positive attitude. Paul - I am in awe of your hard work and passion. Buzz - Just keep those ping pong ball flying! You guys are doing an amazing job - I'm still keeping my fingers crossed we'll see you at Bethany Beach someday soon, so perhaps Paul should start practicing tossing a frisbee! We're thinking of you all and keeping you in our prayers! Kim and Steve and all those kids

Anonymous said...

Very thoughtfull post on Alternative medicine .It should be very much helpfull.

Karim - Creating Power

Lolaudra said...

Just wanted to say Hi! Patty, you are such a wonderful wife, and Paul is such a lucky guy to have such a committed partner in crime. Paul, we are still thinking about you and praying for you. I know that you will go far and beyond soon enough.

Much love,
James and Audrey Harrell

Anonymous said...

Just a reminder that you and your family continue to be in my thoughts and prayers, Pablo. Fight the good fight and keep up the tenacious efforts. Your fellow Regis Royal, Dan Fisher. P.S.How 'bout them Hawkeyes?!

Anonymous said...

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us.
John Steinbeck

Cassandra said...

Hey Guys,

Just checking in to see how everyone at the Jerde establishment is doing.

Ping pong sounds like that would be a lot of fun.

And progress is always progress. Love that you're trying alternative therapies. I'm a big believer in a more wholistic approach to health. I know it works wonders on me through meditation.

Miss you!


tufa4311 said...

Hello, I accidently came across your blog and I just wanted to add my best wishes. I was touched and reminded of what is really important. I will include both of you in my prayers...

Amy Anderson said...


I haven't checked in in awhile--but I think you all often. Thank you for this update. I continue to pray for Paul's steady recovery--and for you all as a family living in a new normal.

May I bring dinner by sometime?