Hello to the Steve's Army nation. Hope this post finds you safe and well.
As we continue to progress in this journey we are continually reminded of what it takes to help Steve recover. While a part of the recovery process is therapy and exercise, another part of this recovery deals with positive thoughts, prayers and support. We experienced these first hand at the Golf Outing a few weeks ago. We would like to share some of our experiences with you.
We had the largest number of participants in the history of the outing. Teams from each rehabilitation activity that Steve attends were there. Teams that have been at every outing and new teams made up of one or more past participants with several first timers were there. One team somehow obtained an outing announcement and decided it was a good cause and signed up. Unknown to them, Steve was a college roommate of the brother-in-law of one team member and we attended his sister's wedding a few years ago. We didn't make the connection until the morning of the outing.
We saw relatives that we have not seen in months or even years. For some wonderful reason they all thought that it was a good time to attend. Their presence made this outing all the more memorable.
Steve tried his best at public speaking this year and while it was a bit garbled the message got home:
"Thank you all for coming. I hope you have fun and that someone wins the car!"
On another note, we have decided to put more effort into correcting Steve's vision issue which is called Left Side Neglect. There is nothing wrong with his sight, eye or optic nerve; the issue is how the brain interprets what he sees. In extreme cases, a person might not know the left side of his body exists. He could have a pain in his left arm but not be able to tell anyone where it hurts. Steve's case is much less severe and deals with his brain thinking anything on his left is not important. Initially Steve would not be able to recognize anything that was left of center. Even if we pointed it out, he would not be able to tell you what the object was. His eyes would not go past the centerline. In order to view anything in the center he would turn his head completely to the left and his eyes would move to the right. About a year ago, we noticed in OT that Steve could reach out and match playing cards mounted on a board. That meant he could not only recognize the card but also that he could move his eyes to the left. This was a major accomplishment and we put some effort into continuing that type of therapy. While we feel we made the best choices at that time, he has improved to a point that we now feel that we can address this more aggressively.
A feeling of "center" is needed for good walking and balance. Steve now sees another OT that deals exclusively with this vision issue. We have also noticed that when driving a golf cart at the outing, Steve's vision seems to be less of a problem. We have borrowed a golf cart and Steve and Rob go "driving" as much as possible in the field behind our house.
We all know Steve can text very well but that requires scanning only the width of his phone (about 1.5 inches). We now have him scanning to 3 inches width and are working to increase that length, by copying articles that are of interest to him and putting them into a MSWORD document and then moving the text into a desired width.
When Steve writes now, he usually starts at the left side of the paper like we all do. Not so long ago, he would start just to the right of the middle of the page. We are cautiously optimistic that we can fix this issue as it seems another "part" of normal is coming back!
Thank you for reading this blog; please keep those positive thoughts and prayers coming in Steve's direction. We ALL have seen the results!
Take care of yourselves!
Rob and Linda
Monday, July 16, 2012
Saturday, April 28, 2012
update #130 from Linda
Hello! Hope this finds you well!
A couple of things to report...
Last week we took a quad cane into the pool and Steve practiced walking with it and did a good job. Yesterday at Willowbrook we tried it for a few minutes and were all pretty amazed at how well he did. We're not sure yet just how long he'll be able to tolerate it, but we'll definitely be working more with it this week!
Walk the Line asked all their clients to write a specific goal with a time frame for their "I Will" display. Today Steve wrote, "I will drive my car in the 2014 Dream Cruise." Love this. Such a reflection on what's important to him, what he's certain he'll accomplish, and he gave himself time to make it happen!
We saw a new rehab optomotrist, and were referred to an OT who specializes in low vision issues. We are really anxious to start working with her. She'll be giving us things to work on at home, too.
Plans are in place for Steve's golf outing, which is on June 23rd. If you'd like a flyer or want to particpate in any way, please let me know (lindapercha@gmail.com or 248-568-6091). Your support is much appreciated!
Thanks so much for checking in! Hope life is good for all of you.
Love,
Linda
A couple of things to report...
Last week we took a quad cane into the pool and Steve practiced walking with it and did a good job. Yesterday at Willowbrook we tried it for a few minutes and were all pretty amazed at how well he did. We're not sure yet just how long he'll be able to tolerate it, but we'll definitely be working more with it this week!
Walk the Line asked all their clients to write a specific goal with a time frame for their "I Will" display. Today Steve wrote, "I will drive my car in the 2014 Dream Cruise." Love this. Such a reflection on what's important to him, what he's certain he'll accomplish, and he gave himself time to make it happen!
We saw a new rehab optomotrist, and were referred to an OT who specializes in low vision issues. We are really anxious to start working with her. She'll be giving us things to work on at home, too.
Plans are in place for Steve's golf outing, which is on June 23rd. If you'd like a flyer or want to particpate in any way, please let me know (lindapercha@gmail.com or 248-568-6091). Your support is much appreciated!
Thanks so much for checking in! Hope life is good for all of you.
Love,
Linda
Friday, April 6, 2012
update #129 from Linda and Steve
Last night Steve said, "Someplace I need to record that I bench pressed 20 pounds today. I know that's a pathetic number, but at least I can do it!"
So I told him I'd put it on the blog! Thought you'd like to know :)
So I told him I'd put it on the blog! Thought you'd like to know :)
Monday, February 20, 2012
Update #128 from Linda
Hello, friends! Thanks for checking in. We hope life is good and that you're enjoying 2012.
Things continue to roll along here. We still go to Willowbrook two afternoons each week, and the people there really feel like family members to us. They provide therapy to Steve, but also just let him know how much they enjoy his company, tease him, share jokes with him, etc. One of our favorite sayings is, "We believe there are angels on earth dressed up to look like people," and it certainly applies to the Willowbrook staff!
A few years ago we heard about a therapy facility ("Walk the Line") that we wanted to try, but at that time they were only accepting people with spinal cord injuries. Well, their name recently came up in a conversation about something totally unrelated, and we discovered that they just started accepting TBI clients, so we began going there last week. It has a loud, gym-like atmosphere with plenty of room to work on walking skills, and lots of young and enthusiastic employees. We're on the morning shift, which means a big adjustment at home since we don't move very fast in the AM! But it will be interesting to see how Steve likes a different schedule. This is also twice each week, and he has a solid three hours of PT assisted by three people. They wear him out!
We continue with the hormone therapy, and think it is helping. Steve is a real trooper and puts up with us stabbing him every day! Blood work was also done this morning to check levels.
Our schedule stays full with horseback riding, massage, swimming, and tennis...all good things for him physically and socially! We're also looking into working with an OT who specializes in vision issues...will know more about that in April.
We're VERY excited to announce that The Great Uncle Dave & His Amazing Assistants are starting to plan Steve's golf outing. It will be on June 23rd and we'll keep you updated as plans fall into place!
In other wonderful news...a foundation in our area ("The Pelican Foundation") helps one person each year by doing a project for them. They have chosen Steve for 2012! We met with their board of directors and their plan is to build a bathroom for Steve in our lower (family room) level and change the flooring in the family room, among other things. The goal is to create a space in our house (Beth refers to it as the "man cave") where Steve can practice skills like walking and transferring, and have more independence and privacy. We are beyond thankful that he was selected for this amazing gift!
We just passed the four year anniversary of Steve's injury, and have sure written a lot of scary posts. But look at this one...not a negative thing on the list. We are feeling very lucky and very blessed.
Take care of yourselves and each other. As always, thanks so much for staying in touch with Steve and keeping him in your thoughts!
Love,
Linda and Rob
Things continue to roll along here. We still go to Willowbrook two afternoons each week, and the people there really feel like family members to us. They provide therapy to Steve, but also just let him know how much they enjoy his company, tease him, share jokes with him, etc. One of our favorite sayings is, "We believe there are angels on earth dressed up to look like people," and it certainly applies to the Willowbrook staff!
A few years ago we heard about a therapy facility ("Walk the Line") that we wanted to try, but at that time they were only accepting people with spinal cord injuries. Well, their name recently came up in a conversation about something totally unrelated, and we discovered that they just started accepting TBI clients, so we began going there last week. It has a loud, gym-like atmosphere with plenty of room to work on walking skills, and lots of young and enthusiastic employees. We're on the morning shift, which means a big adjustment at home since we don't move very fast in the AM! But it will be interesting to see how Steve likes a different schedule. This is also twice each week, and he has a solid three hours of PT assisted by three people. They wear him out!
We continue with the hormone therapy, and think it is helping. Steve is a real trooper and puts up with us stabbing him every day! Blood work was also done this morning to check levels.
Our schedule stays full with horseback riding, massage, swimming, and tennis...all good things for him physically and socially! We're also looking into working with an OT who specializes in vision issues...will know more about that in April.
We're VERY excited to announce that The Great Uncle Dave & His Amazing Assistants are starting to plan Steve's golf outing. It will be on June 23rd and we'll keep you updated as plans fall into place!
In other wonderful news...a foundation in our area ("The Pelican Foundation") helps one person each year by doing a project for them. They have chosen Steve for 2012! We met with their board of directors and their plan is to build a bathroom for Steve in our lower (family room) level and change the flooring in the family room, among other things. The goal is to create a space in our house (Beth refers to it as the "man cave") where Steve can practice skills like walking and transferring, and have more independence and privacy. We are beyond thankful that he was selected for this amazing gift!
We just passed the four year anniversary of Steve's injury, and have sure written a lot of scary posts. But look at this one...not a negative thing on the list. We are feeling very lucky and very blessed.
Take care of yourselves and each other. As always, thanks so much for staying in touch with Steve and keeping him in your thoughts!
Love,
Linda and Rob
Saturday, December 24, 2011
Update #127 from Linda and Rob
Our family would like to wish you all a Merry Christmas and Happy New Year!
Thank you all for your thoughts and prayers throughout the past year. Thank you for visiting Steve. Thank you for texting, writing, sending cards, attending the Golf Outing, posting e-mails and doing what you do to help Steve and our family.
Things continue to roll along here. We are doing some sort of therapy every day. Horseback riding just gets better and better. He is up to about 25 laps of the arena while sitting upright, holding on with both hands, and smiling! We continue to invent things to do in the pool, and usually stay in the water for about 1 1/2 hours each session. His strength and stamina in the water is much improved and noticed by many people there. We also have PT, OT, and Speech Therapy, as well as tennis, on the calendar.
Insurance coverage has been challenging and often changing, but we are hopeful that January 1st it will all settle down and things will fall into place. One of the reasons Linda retired was that she could not cover Steve as an employee, but could as a retiree...one more good reason for that decision!
We are embarking on new therapy for Steve. It deals with certain hormone replacement and has shown promise in the few studies that have been done, on TBI patients, so far. We were referred to an Endocrinologist who has been doing this type of therapy on un-injured patients for years. It has just been determined that this therapy does work for TBI patients and Steve's PM&R doctor suggested it.
We started the therapy about a month ago (daily injections). In that time things have started happening--we think.... We have to continually question ourselves as to what is real and what is possibly "wanted". We are always asking ourselves, "did that really occur?", "did Steve really do that?" We document everything but are still wrestling with what we "want" to happen and what did actually occur. All we can say at this time is we are asking ourselves those questions a lot more frequently these days! Hopefully a good sign.
One thing that is definitely improving is speech. Steve doesn't speak loudly but we can understand about 60% of what he says. After he repeats a couple of times we usually get the rest. Credit Stacey his speech therapist and all the students that work internships at Willowbrook for this improvement. We have learned that if Steve can speak and have someone understand his voice that doesn't know him, that is the real accomplishment.
Willowbrook gives an Annual Award to one client for: "Demonstrating the ability to persevere toward personal goals and enjoy life to its fullest despite the challenges you have been faced with." It is presented at the holiday party each December. There are hundreds of clients that are treated annually at the facility Steve attends. Most attend every day in the morning and afternoon sessions and interact with the staff. The staff numbers over 50, not including support personnel. Steve attends only twice a week for the afternoon session only.
At the party, the following was read about the recipient of this year’s award:
This person gives 100% effort all of the time.
This person never refuses a task their therapists ask, no matter how hard it may be or how much they do not like it.
This person always has a smile for everyone and a joke ready at all times to make you laugh.
You can tell where this person got his determination and love of life; this person has a family that centers their life on helping him achieve his goals.
This person never gives up - he works on therapy tasks not just at Willowbrook.
Although this person only works with 4 therapists at Willowbrook, everyone knows him and his infectious joy for life has spread throughout Willowbrook.
Sound like someone you know???
Of course it is Steve. But he could not have achieved this award without his “family".... all of you who read this blog.
Merry Christmas and Happy New Year!!
Steve, Beth, Linda, and Rob
Thank you all for your thoughts and prayers throughout the past year. Thank you for visiting Steve. Thank you for texting, writing, sending cards, attending the Golf Outing, posting e-mails and doing what you do to help Steve and our family.
Things continue to roll along here. We are doing some sort of therapy every day. Horseback riding just gets better and better. He is up to about 25 laps of the arena while sitting upright, holding on with both hands, and smiling! We continue to invent things to do in the pool, and usually stay in the water for about 1 1/2 hours each session. His strength and stamina in the water is much improved and noticed by many people there. We also have PT, OT, and Speech Therapy, as well as tennis, on the calendar.
Insurance coverage has been challenging and often changing, but we are hopeful that January 1st it will all settle down and things will fall into place. One of the reasons Linda retired was that she could not cover Steve as an employee, but could as a retiree...one more good reason for that decision!
We are embarking on new therapy for Steve. It deals with certain hormone replacement and has shown promise in the few studies that have been done, on TBI patients, so far. We were referred to an Endocrinologist who has been doing this type of therapy on un-injured patients for years. It has just been determined that this therapy does work for TBI patients and Steve's PM&R doctor suggested it.
We started the therapy about a month ago (daily injections). In that time things have started happening--we think.... We have to continually question ourselves as to what is real and what is possibly "wanted". We are always asking ourselves, "did that really occur?", "did Steve really do that?" We document everything but are still wrestling with what we "want" to happen and what did actually occur. All we can say at this time is we are asking ourselves those questions a lot more frequently these days! Hopefully a good sign.
One thing that is definitely improving is speech. Steve doesn't speak loudly but we can understand about 60% of what he says. After he repeats a couple of times we usually get the rest. Credit Stacey his speech therapist and all the students that work internships at Willowbrook for this improvement. We have learned that if Steve can speak and have someone understand his voice that doesn't know him, that is the real accomplishment.
Willowbrook gives an Annual Award to one client for: "Demonstrating the ability to persevere toward personal goals and enjoy life to its fullest despite the challenges you have been faced with." It is presented at the holiday party each December. There are hundreds of clients that are treated annually at the facility Steve attends. Most attend every day in the morning and afternoon sessions and interact with the staff. The staff numbers over 50, not including support personnel. Steve attends only twice a week for the afternoon session only.
At the party, the following was read about the recipient of this year’s award:
This person gives 100% effort all of the time.
This person never refuses a task their therapists ask, no matter how hard it may be or how much they do not like it.
This person always has a smile for everyone and a joke ready at all times to make you laugh.
You can tell where this person got his determination and love of life; this person has a family that centers their life on helping him achieve his goals.
This person never gives up - he works on therapy tasks not just at Willowbrook.
Although this person only works with 4 therapists at Willowbrook, everyone knows him and his infectious joy for life has spread throughout Willowbrook.
Sound like someone you know???
Of course it is Steve. But he could not have achieved this award without his “family".... all of you who read this blog.
Merry Christmas and Happy New Year!!
Steve, Beth, Linda, and Rob
Saturday, August 20, 2011
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
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
Monday, May 30, 2011
Update #125 from Linda and Rob
Good morning, friends. Happy Memorial Day!
Thank you for checking in on this blog, despite the fact that we're so bad about updating it!
Things continue to roll along here. People ask all the time if Steve is getting better and the answer is yes, but it just takes a VERY long time. Sometimes the progress is so slow and small that it catches you off guard when you realize it has happened. All of a sudden we'll notice something and wonder when THAT started. One example is the use of his left arm. It still has a very long way to go, but often he'll lift it or use it without even thinking about it, and that's quite amazing considering where he started!
We are back to horseback riding and the past two weeks have been the best ever. His posture, balance, and ability to hold on with his left hand have greatly improved. We love the horse he rides (Malabar) and make him a special "horse granola" every week. When the lesson is over and we bring the wheelchair in, you can just watch Malabar's eyes as he realizes who Steve is and what treat awaits him! It's hard to describe how wonderful the people there are, too. Many of them are "kids" and show such a level of maturity and support that it's mind boggling. He has so many cheerleaders and friends there...it's a long drive, but we look forward to going every week.
One swimming activity has ended for the summer, so we now take Steve to the YMCA twice each week. Gail and Grams often come with us. We terrify people as we walk him into the pool by going down a ramp...I'm sure they're sure we are going to fall! We make up exercises to do in the pool - nothing you'd find in a therapy book, but they work for us!
The Nu-Step is proving to be a wonderful thing. He often pedals very slowly or just sits for awhile, so it's a time-consuming but valuable activity. We have given him "ownership" of this and rely on him to say when he's ready to stop, take a break, etc. The machine counts the length of time you are actually working out, and he's now up to over 40 minutes. That means he's probably been on the machine for about twice that long. Six months ago his doctor said she didn't know if he'd be able to use that machine, so we're more than a little happy with how things are going!
We've been spending lots of time with a low vision specialist trying to figure out if Steve's eyes are working together. Just when she thinks she's on to something, something changes and we're back to square one! The last visit we just pretty much gave up on the idea of prisms and talked about ways to strengthen his eyes and encourage more scanning without turning his head. Many of these things are simple and we do them already. We also have a computer program to use and are going to try some things with Beth's Kindle and possibly get something like an I-Pad.
We continue on with therapy at Willowbrook two afternoons each week, despite issues with our insurance. Those people are blessings in our lives! Therapy with Steve is hard work, and everyone is exhausted by the end of the day. You can imagine walking the halls with Steve in a walker, someone nudging his feet along, someone keeping his shoulders straight and his hip in, etc., and everyone else cheering him on. Quite a sight! He had an MRI on his shoulder and it showed no injury (probably just a "frozen shoulder" from lack of use), so now they're beating him up in therapy even more than ever!
The wonderful Uncle Dave and his wonderful helpers are busy planning the golf outing. We really can't express to them or to those of you who participate how grateful we are for your support. Without it so many of the things we do for and with Steve would not be possible. Thank you all.
Also...Steve always loves hearing from people, whether by text message or through the mail. Email is a little trickier, but we're working on that. His phone number is 248-770-6092 and our address is 1629 Commerce Pines Dr., Walled Lake, MI 48390. He (and we) would be thankful for any communicating you do with him!
Take care of yourselves and each other. Thanks so much for reading this! Have a wonderful Monday.
Love,
Linda and Rob
Thank you for checking in on this blog, despite the fact that we're so bad about updating it!
Things continue to roll along here. People ask all the time if Steve is getting better and the answer is yes, but it just takes a VERY long time. Sometimes the progress is so slow and small that it catches you off guard when you realize it has happened. All of a sudden we'll notice something and wonder when THAT started. One example is the use of his left arm. It still has a very long way to go, but often he'll lift it or use it without even thinking about it, and that's quite amazing considering where he started!
We are back to horseback riding and the past two weeks have been the best ever. His posture, balance, and ability to hold on with his left hand have greatly improved. We love the horse he rides (Malabar) and make him a special "horse granola" every week. When the lesson is over and we bring the wheelchair in, you can just watch Malabar's eyes as he realizes who Steve is and what treat awaits him! It's hard to describe how wonderful the people there are, too. Many of them are "kids" and show such a level of maturity and support that it's mind boggling. He has so many cheerleaders and friends there...it's a long drive, but we look forward to going every week.
One swimming activity has ended for the summer, so we now take Steve to the YMCA twice each week. Gail and Grams often come with us. We terrify people as we walk him into the pool by going down a ramp...I'm sure they're sure we are going to fall! We make up exercises to do in the pool - nothing you'd find in a therapy book, but they work for us!
The Nu-Step is proving to be a wonderful thing. He often pedals very slowly or just sits for awhile, so it's a time-consuming but valuable activity. We have given him "ownership" of this and rely on him to say when he's ready to stop, take a break, etc. The machine counts the length of time you are actually working out, and he's now up to over 40 minutes. That means he's probably been on the machine for about twice that long. Six months ago his doctor said she didn't know if he'd be able to use that machine, so we're more than a little happy with how things are going!
We've been spending lots of time with a low vision specialist trying to figure out if Steve's eyes are working together. Just when she thinks she's on to something, something changes and we're back to square one! The last visit we just pretty much gave up on the idea of prisms and talked about ways to strengthen his eyes and encourage more scanning without turning his head. Many of these things are simple and we do them already. We also have a computer program to use and are going to try some things with Beth's Kindle and possibly get something like an I-Pad.
We continue on with therapy at Willowbrook two afternoons each week, despite issues with our insurance. Those people are blessings in our lives! Therapy with Steve is hard work, and everyone is exhausted by the end of the day. You can imagine walking the halls with Steve in a walker, someone nudging his feet along, someone keeping his shoulders straight and his hip in, etc., and everyone else cheering him on. Quite a sight! He had an MRI on his shoulder and it showed no injury (probably just a "frozen shoulder" from lack of use), so now they're beating him up in therapy even more than ever!
The wonderful Uncle Dave and his wonderful helpers are busy planning the golf outing. We really can't express to them or to those of you who participate how grateful we are for your support. Without it so many of the things we do for and with Steve would not be possible. Thank you all.
Also...Steve always loves hearing from people, whether by text message or through the mail. Email is a little trickier, but we're working on that. His phone number is 248-770-6092 and our address is 1629 Commerce Pines Dr., Walled Lake, MI 48390. He (and we) would be thankful for any communicating you do with him!
Take care of yourselves and each other. Thanks so much for reading this! Have a wonderful Monday.
Love,
Linda and Rob
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