I haven't updated my blog in a while-since March. Basically, I didn't know what to post. Ray peaked under the direct supervision of the doctor in Lubbock, but has steadily declined since returning home. He was spending hours and hours a day while in Lubbock doing therapy and exercises. He doesn't have time like that at home. And let's face it, his disease is progressive, and well, it's progressing. And then, I did have news to post, but needed to get past Gunnar's State Finals and the end of the school year before sharing.
May 14 was Ray's last day to work. His supervisor asked him to get a physical from his physician and to take a week off. We made a mad dash to Enid to see the neurologist, and decided that for Ray's safety and to relieve Baker Hughes of any potential liability, it was time for him to quit working. I have to say, Baker Hughes has been wonderful. They took care of Ray and allowed him to work longer than I ever could have imagined. We will always be grateful for the way they handled Ray's illness.
I'm not sure what our future holds. Right now, a lot of paperwork. It's a little bit overwhelming. We are blessed that Ray has disability insurance and retirement that we can access. I've already started the long, arduous process of applying for Social Security Disability. I fully expect that to take at least a year to go through. Financially, I think we will be okay.
Emotionally, things are harder. I can't decide if it's a blessing or a curse that this has happened at the beginning of summer. On one hand, I'm grateful that I can be here with Ray and help keep him busy and his spirits up. On the other, I'm not used to having Ray here all the time. The boys and I have a routine and we know the way we do things. Now there's Ray to consider, and his idea of how something should be done or handled isn't always the way we've been doing it. My patience wears thin pretty quick too. It's an adjustment for all of us.
We've received more prayers and blessings through this than I ever could have imagined. Please, keep praying.
Monday, June 03, 2013
Sunday, March 03, 2013
The Long Journey Back
I usually put a lot more thought into what I write in these blogs. Life has moved so fast this week, that I really haven't put a lot of thought into this one. Trust me, that's a good thing!!
I got to Lubbock Friday night, a week ago. My family had been feeding me reports of Ray's progress over the last two weeks, but I was incredibly anxious to see it for myself. Especially since Ray wouldn't really acknowledge much progress. Gage noticed changes in Ray's speech pattern even before I did. After Ray had been in Lubbock a week, he told Gunnar, "You have to talk to Dad! His speech is so fluid. He doesn't have to stop and think of the words anymore!" As I talked to Ray over the next week, I noticed that Gage was right. Ray also stopped taking his Namenda that last week. The last time he stopped taking his meds was catastrophic, and I entered into the situation with some trepidation.
The Rettes had a playoff game in Lubbock Friday night, so not long after arriving in Lubbock, we took off for Tech. It was when we got to the arena that I could really see the difference. Ray was walking at a normal speed, and stepping off and on curbs in a normal stride!!! I am used to having to wait for Ray to stop and think before he stepped on or off a curb. And really, I'm usually holding onto him so he doesn't fall when he does it. We walked the ramps instead of the stairs going in, but it was freezing when we left the game, and Ray took the stairs with no problems. I cannot describe to you the elation I felt. I can't even remember the last time Ray could walk like that. Maybe 2004?
I knew that Diet Coke was going to be an issue. And it was. I think Ray really expected me to go get him one when I got there. I didn't. We had a cousin reunion Saturday (minus two), and met with Dr. Danforth Sunday morning (we met early due to the approaching blizzard). The doctor reviewed Ray's diet and exercises with me. Basically, lots of meat, veggies, fruit, and tons of water. Ray should have minimal grains, avoid processed foods and sugars, and ABSOLUTELY NO artificial sweeteners. Dr. Danforth feels that artificial sweeteners aren't good for anybody (I'm sure he's right), but that Ray's body can't process them. He should NEVER have another Diet Coke EVER again. He can have a regular Coke occasionally, but not diet.
I don't know what Ray expected to hear at the doctor's office, but it wasn't that. He was furious. As we left, he demanded I take him to get a Diet Coke. I refused. It got ugly. When we left for Booker, I was almost hysterical from sadness and frustration. For some reason, as soon as we got in the car to leave, Ray calmed down. We stopped at Chili's in Plainview for a late lunch. Ray ate chicken fajitas with no tortillas and water. He's been home a week today, and still hasn't had a Diet Coke. He eats what he is supposed to eat, avoids what he is supposed to avoid (even when everyone else is eating it), drinks his water, takes his supplements, and does his exercises. He finally admitted to me that he could feel and see the difference. I knew this had to be the case. Why else would he be so committed to jumping through all these hoops if he didn't think they were working?
When we got home, we were snowed in until Wednesday. Ray got out of the car Wednesday morning to go into work and Gunnar said, "I don't think Dad is walking any better. I can't see the difference." Of course, we were all walking pretty gingerly across the ice and snow. A lot of melting occurred during the day Wednesday, and when we went to pick Ray up, he stepped off the curb and walked right to us. I'd seen it at Tech, but watching Gunnar's reactions was priceless. That smile was worth the time, money, and heartache of the last few weeks.
Tonight we will drop Ray's pickup off at the mechanic's shop for some repairs, and when it comes out, he'll be driving it! This is going to be wonderful for all of us. The biggie is that it will be a huge boost to Ray's confidence and self-esteem, but it's going to make life for me and the boys much more pleasant too. We won't all be sitting around Perryton every afternoon, or my Dad won't have to make a trip over to get them. Our quality of life is going to improve a lot!!!
Again, I can't thank everyone enough for all the things that have been done for us. The prayers are working, so please keep praying. This isn't a cure, just a lifestyle to increase the quality (and hopefully quantity) of Ray's life. We will be going back to Lubbock once or twice a month, maybe forever, but as far as we can tell, it's completely worth it! The journey we've been through so that Ray could regain some of his health has been a long and stressful one for all of us. We've sought answers in places we never expected, and found answers in places we never expected. And been helped along our path in ways we never expected. We are so blessed, and God is so good.
I got to Lubbock Friday night, a week ago. My family had been feeding me reports of Ray's progress over the last two weeks, but I was incredibly anxious to see it for myself. Especially since Ray wouldn't really acknowledge much progress. Gage noticed changes in Ray's speech pattern even before I did. After Ray had been in Lubbock a week, he told Gunnar, "You have to talk to Dad! His speech is so fluid. He doesn't have to stop and think of the words anymore!" As I talked to Ray over the next week, I noticed that Gage was right. Ray also stopped taking his Namenda that last week. The last time he stopped taking his meds was catastrophic, and I entered into the situation with some trepidation.
The Rettes had a playoff game in Lubbock Friday night, so not long after arriving in Lubbock, we took off for Tech. It was when we got to the arena that I could really see the difference. Ray was walking at a normal speed, and stepping off and on curbs in a normal stride!!! I am used to having to wait for Ray to stop and think before he stepped on or off a curb. And really, I'm usually holding onto him so he doesn't fall when he does it. We walked the ramps instead of the stairs going in, but it was freezing when we left the game, and Ray took the stairs with no problems. I cannot describe to you the elation I felt. I can't even remember the last time Ray could walk like that. Maybe 2004?
I knew that Diet Coke was going to be an issue. And it was. I think Ray really expected me to go get him one when I got there. I didn't. We had a cousin reunion Saturday (minus two), and met with Dr. Danforth Sunday morning (we met early due to the approaching blizzard). The doctor reviewed Ray's diet and exercises with me. Basically, lots of meat, veggies, fruit, and tons of water. Ray should have minimal grains, avoid processed foods and sugars, and ABSOLUTELY NO artificial sweeteners. Dr. Danforth feels that artificial sweeteners aren't good for anybody (I'm sure he's right), but that Ray's body can't process them. He should NEVER have another Diet Coke EVER again. He can have a regular Coke occasionally, but not diet.
I don't know what Ray expected to hear at the doctor's office, but it wasn't that. He was furious. As we left, he demanded I take him to get a Diet Coke. I refused. It got ugly. When we left for Booker, I was almost hysterical from sadness and frustration. For some reason, as soon as we got in the car to leave, Ray calmed down. We stopped at Chili's in Plainview for a late lunch. Ray ate chicken fajitas with no tortillas and water. He's been home a week today, and still hasn't had a Diet Coke. He eats what he is supposed to eat, avoids what he is supposed to avoid (even when everyone else is eating it), drinks his water, takes his supplements, and does his exercises. He finally admitted to me that he could feel and see the difference. I knew this had to be the case. Why else would he be so committed to jumping through all these hoops if he didn't think they were working?
When we got home, we were snowed in until Wednesday. Ray got out of the car Wednesday morning to go into work and Gunnar said, "I don't think Dad is walking any better. I can't see the difference." Of course, we were all walking pretty gingerly across the ice and snow. A lot of melting occurred during the day Wednesday, and when we went to pick Ray up, he stepped off the curb and walked right to us. I'd seen it at Tech, but watching Gunnar's reactions was priceless. That smile was worth the time, money, and heartache of the last few weeks.
Tonight we will drop Ray's pickup off at the mechanic's shop for some repairs, and when it comes out, he'll be driving it! This is going to be wonderful for all of us. The biggie is that it will be a huge boost to Ray's confidence and self-esteem, but it's going to make life for me and the boys much more pleasant too. We won't all be sitting around Perryton every afternoon, or my Dad won't have to make a trip over to get them. Our quality of life is going to improve a lot!!!
Again, I can't thank everyone enough for all the things that have been done for us. The prayers are working, so please keep praying. This isn't a cure, just a lifestyle to increase the quality (and hopefully quantity) of Ray's life. We will be going back to Lubbock once or twice a month, maybe forever, but as far as we can tell, it's completely worth it! The journey we've been through so that Ray could regain some of his health has been a long and stressful one for all of us. We've sought answers in places we never expected, and found answers in places we never expected. And been helped along our path in ways we never expected. We are so blessed, and God is so good.
Wednesday, February 13, 2013
The Smallest Ray of Hope
Disclaimer: If you think we've made a poor decision or that we have sought a "quack" for treatment, please keep those opinions to yourself. I'm not trying to be rude, we just can't handle any negative thoughts, opinions, or people right now.
For months we've lived in darkness. Negativity and hopelessness dogged us at every turn. We spent our time divided between existing and preparing for the bleakest of futures. A future with Ray confined to a wheelchair, unable to speak or swallow, or even rationalize, was the best we could hope for. A future without Ray, the worst. Neither fits in to what is "fair".
We went to Tech in January for a second opinion. I guess I didn't blog about that. There was really nothing to say. Dr. Wilms is a fantastic guy, and obviously has a great heart. When he sat down with us to tell us that, unfortunately, he agrees with our physicians and that there was nothing that could be done for Ray, I really thought he was going to cry. I imagine Dr. Wilms is about Ray's age, and he has young daughters. Maybe it hit a little too close to home. It's odd to feel you should be consoling your doctor. I hate to sound callused, but Ray and I have heard it so many times, we're used to it. He did a blood test to check for vitamin E deficiencies, which came back normal, and scheduled a lumbar puncture (a.k.a. spinal tap) for February 7.
Just before our visit last week, my uncle called me. He and my aunt live in Lubbock, and since we were going to be there anyways, he wanted us to consider seeing a doctor that was a little different, but seemed to get results. At this point, I figured we didn't really have a lot to left to lose. We're going to meet our deductible this year one way or another, and it didn't seem ridiculous to meet it actually seeking treatment as opposed to getting more MRI's that tell us Ray is getting worse. Which we know without the MRI. After Ray's lumbar puncture at Tech, we met with Dr. Danforth. He's a chiropractor that practices alternative medicine. I promised my kids we would try "everything" to save their dad. He falls under that scope. So after Ray's lumbar puncture at Tech, we grabbed some lunch and some rest before heading to Dr. Danforth's office.
Two-and-a-half hours later, we left. Dr. Danforth was with us for most of that time - and Ray was picking up his feet when he walked out of the office (he's shuffled for years). The doctor gave us a lot of information in that "small" amount of time, and it really took me a few days to process it all. Basically, he feels that instead of treating Ray like an Alzheimer's patient, we should be treating him like a stroke patient. He explained women recover from strokes quicker than men because they build "program centers" or information on both sides of their brain, and in more than one place. Men are more likely to store it on one side, and in one place. Dr. Danforth never promised a cure, or even a viable treatment, but he promised to try. Which is more than we've gotten from any other doctor.
The best way I can explain it, he's using intensive physical therapy and nutrition (and some other odd things I just don't know how to explain...and you'd think I was weird if I succeeded) to help Ray's muscles and nervous system "remember" or "relearn" how to work. He has Ray doing exercises and stretching muscles. Ray is on a sugar control diet with no caffeine or artificial sweeteners (no Diet Coke for Ray!!), no grains, rare steak, veggies, and lots of water. I'm sort of surprised he hasn't asked Ray to give up Copenhagen, but maybe he knows that would be asking one thing too many. The diet isn't forever or Ray might throw the gauntlet down at that too.
Ray will see Dr. Danforth four times a day for all of this week, and will stay down there next week also though I don't know how many appointments he will have each day. Pat and Harold (my aunt and uncle) are taking great care of him and driving him to appointments. I'm at home taking care of both sets of my kids (my boys and my students), and taking some time to relax and recuperate myself. It's amazing how well I've been able to sleep since I got home Monday night. It's like the weight of the world has been lifted off my shoulders. I know this isn't a cure. I know we will still lose Ray eventually. But I have hope again. Hope that we still have more time together while Ray has a better quality of life. That smallest ray of hope has illuminated my entire world again. Even if it's dashed, I know that we tried.
I have one specific prayer request. Please pray this works. Please pray that Ray's quality of life improves. Please pray that he regains the ability to drive. Even if it's not in the next two weeks, but soon. It seems selfish and trivial, but considering where we live, the ability to drive gives us freedom, the ability to share tasks, and more time for each other and our kids. Also, please pray for our family, friends, co-workers, and our entire support system. We have been helped by so many people in so many different ways. Not just financially, but emotionally, spiritually, and with all sorts of daily tasks, our kids, our jobs, and the tons of prayers that are said for us. There are so many people praying for us that we know we are being prayed for constantly. The generosity of friends, family, and even complete strangers is more than my mind can grasp. There are too many blessings to count.
For months we've lived in darkness. Negativity and hopelessness dogged us at every turn. We spent our time divided between existing and preparing for the bleakest of futures. A future with Ray confined to a wheelchair, unable to speak or swallow, or even rationalize, was the best we could hope for. A future without Ray, the worst. Neither fits in to what is "fair".
We went to Tech in January for a second opinion. I guess I didn't blog about that. There was really nothing to say. Dr. Wilms is a fantastic guy, and obviously has a great heart. When he sat down with us to tell us that, unfortunately, he agrees with our physicians and that there was nothing that could be done for Ray, I really thought he was going to cry. I imagine Dr. Wilms is about Ray's age, and he has young daughters. Maybe it hit a little too close to home. It's odd to feel you should be consoling your doctor. I hate to sound callused, but Ray and I have heard it so many times, we're used to it. He did a blood test to check for vitamin E deficiencies, which came back normal, and scheduled a lumbar puncture (a.k.a. spinal tap) for February 7.
Just before our visit last week, my uncle called me. He and my aunt live in Lubbock, and since we were going to be there anyways, he wanted us to consider seeing a doctor that was a little different, but seemed to get results. At this point, I figured we didn't really have a lot to left to lose. We're going to meet our deductible this year one way or another, and it didn't seem ridiculous to meet it actually seeking treatment as opposed to getting more MRI's that tell us Ray is getting worse. Which we know without the MRI. After Ray's lumbar puncture at Tech, we met with Dr. Danforth. He's a chiropractor that practices alternative medicine. I promised my kids we would try "everything" to save their dad. He falls under that scope. So after Ray's lumbar puncture at Tech, we grabbed some lunch and some rest before heading to Dr. Danforth's office.
Two-and-a-half hours later, we left. Dr. Danforth was with us for most of that time - and Ray was picking up his feet when he walked out of the office (he's shuffled for years). The doctor gave us a lot of information in that "small" amount of time, and it really took me a few days to process it all. Basically, he feels that instead of treating Ray like an Alzheimer's patient, we should be treating him like a stroke patient. He explained women recover from strokes quicker than men because they build "program centers" or information on both sides of their brain, and in more than one place. Men are more likely to store it on one side, and in one place. Dr. Danforth never promised a cure, or even a viable treatment, but he promised to try. Which is more than we've gotten from any other doctor.
The best way I can explain it, he's using intensive physical therapy and nutrition (and some other odd things I just don't know how to explain...and you'd think I was weird if I succeeded) to help Ray's muscles and nervous system "remember" or "relearn" how to work. He has Ray doing exercises and stretching muscles. Ray is on a sugar control diet with no caffeine or artificial sweeteners (no Diet Coke for Ray!!), no grains, rare steak, veggies, and lots of water. I'm sort of surprised he hasn't asked Ray to give up Copenhagen, but maybe he knows that would be asking one thing too many. The diet isn't forever or Ray might throw the gauntlet down at that too.
Ray will see Dr. Danforth four times a day for all of this week, and will stay down there next week also though I don't know how many appointments he will have each day. Pat and Harold (my aunt and uncle) are taking great care of him and driving him to appointments. I'm at home taking care of both sets of my kids (my boys and my students), and taking some time to relax and recuperate myself. It's amazing how well I've been able to sleep since I got home Monday night. It's like the weight of the world has been lifted off my shoulders. I know this isn't a cure. I know we will still lose Ray eventually. But I have hope again. Hope that we still have more time together while Ray has a better quality of life. That smallest ray of hope has illuminated my entire world again. Even if it's dashed, I know that we tried.
I have one specific prayer request. Please pray this works. Please pray that Ray's quality of life improves. Please pray that he regains the ability to drive. Even if it's not in the next two weeks, but soon. It seems selfish and trivial, but considering where we live, the ability to drive gives us freedom, the ability to share tasks, and more time for each other and our kids. Also, please pray for our family, friends, co-workers, and our entire support system. We have been helped by so many people in so many different ways. Not just financially, but emotionally, spiritually, and with all sorts of daily tasks, our kids, our jobs, and the tons of prayers that are said for us. There are so many people praying for us that we know we are being prayed for constantly. The generosity of friends, family, and even complete strangers is more than my mind can grasp. There are too many blessings to count.
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