Update 126 from Linda and Rob

Hello, Friends!

Well..... the golf outing has come and gone with great results. We had the most golfers ever. Steve was able to visit with most and again drove the cart. We cannot say enough about the generosity of those who come out, show support in other ways, or the people that work to put it on. We hope we didn't miss thanking anyone, but just in case we're attaching our thank you note at the end of this post.

We had hoped that a Low Vision specialist, who uses prisms in the lenses, could have helped with Steve's vision but it did not work out. Steve's left neglect issues did not respond to the correction that the prisms provided. Since Steve can scan the 2 inches of his cell phone with no problem, the doctor suggested we try moving to something a little bigger like an iPad. We have purchased one, but have yet to try it out. We'll keep you posted!

Steve continues to improve with his core strength when horseback riding. He did 6 laps of the arena last session without having to stop and adjust his posture. This is a milestone for him and we hope something to build on.

Although at first glance Steve appears to have plateaued in speech, nothing is further from the truth. Some have said they feel Steve has even gone backward. What has changed dramatically is Steve's ability to formulate an answer and then get it out with clarity. Steve could always "parrot" back words when spoken to him. We don't even practice that anymore. The issue was and always will be having to interpret what is going on and responding to it. Steve is working to reduce the time it takes for him to interpret a scene or situation and explain what it is all about in a complete sentence. For example, Stacy, (Steve's Speech Therapist) will show him a picture (that she doesn't see) of something (like a pair of ice skates) and he will have to say a sentence to her in such a way that she knows what the picture is. His sentence for ice skates was, "Trying to ice skate in any season but winter is kind of difficult." His sentence for a picture of a key was, "I miss my car keys." The response time in this exercise is dropping dramatically.

We are also trying another form of therapy two days a week. It deals with vibration and seems to reduce the tone in his muscles. Steve has done great things at this new place while being "vibrated". We are hoping the progress continues. They are also working on core strength and left arm strength, with the hopes that he will be able to use a walker more effectively as those things improve.

At Willowbrook we're back to using the "RJO" walker which is big and heavy and supports Steve's elbows. He routinely does four laps (over 1200 feet) with someone in front of him and someone behind, nudging his feet along if he gets stuck. Yesterday we discovered that we no longer need the person in front (who steers and keeps the RJO from getting ahead of him), which is a great improvement!

We went to Saugatuck for a few days and got our feet in Lake Michigan, which is one of our favorite forms of therapy! We rented a wheelchair that goes in the sand, and it worked out great. Great beach, beautiful weather, out for a couple nice dinners...a good time.

PLEASE join me (Rob) in wishing Linda a great retirement. YES LINDA is now retired!!! We feel it is in the best interest for Steve to have both of us around and it sure helps with the workload. The retirement will allow Steve to be once again covered by Linda's health insurance as well as Vision and Dental. Having two people evaluating Steve's progress is also good for his recovery.

As always, we thank you for reading this and being patient with the large time gaps between posts. As always, we promise to try to do a better job! Take care of yourselves, and thanks for continuing to keep Steve in your thoughts. They weren't kidding when they said this is a marathon, not a sprint, and we're so grateful that you understand that!

Love,

Rob and Linda

Golf Outing Thank You:

Dear Friends,

Once again we search for the words to thank you for being part of Steve’s golf outing. “Thank you” never seems like enough, but we hope you know how sincerely it’s meant! Unless you’re on the receiving end of such an event, we don’t think you can comprehend the emotional support it provides.

The other day we dropped some things off at the golf course and one man there commented to another that they were for “Steve’s Army.” That stopped us in our tracks. Even though we still say that and have shirts with that printed on them, it has been awhile since we really thought about what it means. If you look up the word “army” you’ll get all the predictable definitions, and then one that says, “a large body of people united for a specific purpose.” That’s a good start, but you are much more than that.

Families who find themselves in situations like ours walk a fine line between asking for help and not wanting to impose on others or make them feel obligated. Please know that it’s something we take very seriously and think about and worry about.

Then things happen to reassure us. You call and ask when the outing is, say how much you’re looking forward to it, tell us you have friends who we have never met coming with you, say that you treasure your outing pictures, send notes and gifts to help support it. We arrive at the golf course and see so many old and new friends. We see names of people who aren’t there, but are helping in many other ways to make it a success. We feel the power of people present and not present, all hoping for nice weather and a wonderful day. When the golfers drive off in the carts, and the realization of how many of you are there hits us…to say that moment is overwhelming is such an understatement.

We always tell people that the outing is fun. We hope you had fun! But you can’t imagine how much more it is than that. It opens up so many doors for Steve, and makes us able to consider so many other ways to help him. Right now he has a busy schedule that includes traditional therapy (PT, OT, Speech), horseback riding, tennis, swimming, massage, and working out at the gym. This year we were also able to purchase a type of seated elliptical that is used in hospitals and many rehab facilities, which is a great cardio workout for him. New ideas come up all the time and they are slowly but surely working. Thankfully they ARE working and we hope you know that you are a huge part of that.

There are many ways to define great people. Their names might be found in newspapers, books, or on television. Or their names might be found on a list at a golf course in Hartland, Michigan. That’s what our family thinks. That’s what our family knows.

As always, thank you from the bottom of our hearts for being part of Steve’s Army. We treasure you and your friendship and your support.

Sincerely,

Rob, Linda, Beth, and Steve Percha