We've been traveling, and experiencing multiple challenges. Every year we plan to leave Arizona and spend a good share of the summer in Washington State. Usually we leave in late May or early June. We make a leisurely trip north, taking a couple of weeks, with stops along the way to visit family and friends. This year was different. We weren't able to leave until mid-July and we didn't have time for visits on the trip north.
Just getting ready to leave overly warm Arizona was a challenge. Jim needed several unplanned-for doctors appointments first. We finally left with stitches in his arm where the doc had removed a skin cancer. Nurse Helen removed the stitches and that is now fine. The thermometer hit 120 degrees before we were finally able to pack up and go. We managed a marathon five-day trip in the motor home, driving 7-10 hours a day to arrive in Kettle Falls WA, up near the Canadian border for a family reunion I'd been helping to plan. Then we went from there to the family farm where my daughter lives for some more family time. Both were enjoyable but we ate something...or did something...and we've been laid low with digestive problems ever since. (I definitely do not recommend living in a motor home with two people with diarrhea!)
Jim's illness was more serious than mine. It was also more worrisome because anything stressful can trigger his Crohn's disease which has been thankfully dormant for over a year. Thus, I have had the honor of being caregiver when I wasn't feeling my best. I am blessed that even when he hurts, Jim is a gentle patient. Even so, we are both stressed and that of course, makes everything worse--and the likelihood of the Crohn's greater although so far, it is still quiet. The whole thing is a vicious circle that is hard from which to escape The difference for us is that we know that we will both recover and be able to move on with our lives. Our hearts go out to all of you who are dealing with less temporary situations.
We are now on our own in a favorite RV park. I am feeling better and we hope that soon Jim will too. From the time we left until now, we've not opened our laptops and so this is the first chance I've had to post. I think that is the longest I've gone without checking at least my email for over a decade! Sorry this is so late. I planned to post ever two weeks but it's been much longer. That's the way it is when life throws you curve balls.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
Showing posts with label personal. Show all posts
Showing posts with label personal. Show all posts
Saturday, August 5, 2017
Friday, August 12, 2016
Eleven Years Today!
Today is our 11th Anniversary. Although neither of us, nor any of our loved ones presently have LBD, it has always played a big part in our relationship, right from the first. Jim is a quiet man, unless he’s talking about a subject he’s passionate about. I got him talking by asking him about his license plate: LBDA.ORG. He told me about how his wife had died with LBD. He told me about the problems trials he’d had getting the right care for her. And he proudly told me about how he and four other caregivers had started the Lewy Body Dementia Association. After we married, I told him that although I’d support him in his mission, it wasn’t MY mission. But then, I made the mistake of commenting about how the LBDA was not doing well with volunteers—and became their volunteer coordinator. Jim’s mission became mine, and has been ever since.
In our eleven years of marriage, we’ve traveled a lot. From the first, we lived in Arizona and traveled every year to Washington state. At first, Jim also traveled to Georgia for LBDA board meetings. When, in 2009, he completed his six year term on the board, we were already going in a different, but compatible direction, teaching about LBD as we traveled, and at home. Over the years, we’ve attended many conferences and participated in several. We’ve also attended uncountable caregiver and Parkinson’s support groups. This year, we plan to attend the World Parkinson’s Congress in Portland Oregon. We find these events extremely important because that’s what keeps us in contact with people who are living with LBD and Parkinson’s. Your experiences are what drive our work. We take what we hear you talking about, do some research and present the results with our own slant.
Along the way, we’ve co-authored three books. The first one, Riding a Roller Coaster with Lewy Body Dementia was initially directed towards staff. When we tried to get it published commercially, editors were interested but told us, “Staff don’t buy these books. Family caregivers do.” The editors were right, and our next book was directed towards family caregivers. We are honored to say that A Caregiver’s Guide to Lewy Body Dementia is now a staple in every LBD caregiver’s library. But we had more to say and so last year, we published Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia. It focuses on those symptoms where Parkinson’s transitions into Lewy body dementia and on ways to deal with these with fewer drugs. We also re-published the Roller Coaster book because many family caregivers want something to give to the people who care for their loved ones. You can now buy the set of three, the “Trio” on our website at a discounted price.
I was a writer before Jim and I ever met. My first book, Betsy, is an historical romance novel based in Missouri in 1850. The heroine is my grandfather’s step-mother, who was only four years older than him. If I ever stop writing about LBD long enough, I have a sequel half-written that will actually be about my grandparents.
Then, in 2013, I wrote On the Road with the Whitworths, a memoir of our first year of traveling in an RV and the start of our teaching about LBD. Unlike the books about LBD, this book is fun to read. Especially if you are dealing with this baffling disorder, reading about it can be difficult. We recommend that you only read a few pages of our LBD books at a time and digest that before you go on. Even take a break and read something lighter. Reading this book provides a good break. It keeps everything light and is designed to make you laugh.
Since 2011, I’ve been writing this weekly blog. It has actually provided a lot of the content for our second LBD book. We now have another LBD book in the works and hope to have it published by this time next year.
For information about Lewy body disorders, read our books:
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.
In our eleven years of marriage, we’ve traveled a lot. From the first, we lived in Arizona and traveled every year to Washington state. At first, Jim also traveled to Georgia for LBDA board meetings. When, in 2009, he completed his six year term on the board, we were already going in a different, but compatible direction, teaching about LBD as we traveled, and at home. Over the years, we’ve attended many conferences and participated in several. We’ve also attended uncountable caregiver and Parkinson’s support groups. This year, we plan to attend the World Parkinson’s Congress in Portland Oregon. We find these events extremely important because that’s what keeps us in contact with people who are living with LBD and Parkinson’s. Your experiences are what drive our work. We take what we hear you talking about, do some research and present the results with our own slant.
Along the way, we’ve co-authored three books. The first one, Riding a Roller Coaster with Lewy Body Dementia was initially directed towards staff. When we tried to get it published commercially, editors were interested but told us, “Staff don’t buy these books. Family caregivers do.” The editors were right, and our next book was directed towards family caregivers. We are honored to say that A Caregiver’s Guide to Lewy Body Dementia is now a staple in every LBD caregiver’s library. But we had more to say and so last year, we published Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia. It focuses on those symptoms where Parkinson’s transitions into Lewy body dementia and on ways to deal with these with fewer drugs. We also re-published the Roller Coaster book because many family caregivers want something to give to the people who care for their loved ones. You can now buy the set of three, the “Trio” on our website at a discounted price.
I was a writer before Jim and I ever met. My first book, Betsy, is an historical romance novel based in Missouri in 1850. The heroine is my grandfather’s step-mother, who was only four years older than him. If I ever stop writing about LBD long enough, I have a sequel half-written that will actually be about my grandparents.
Then, in 2013, I wrote On the Road with the Whitworths, a memoir of our first year of traveling in an RV and the start of our teaching about LBD. Unlike the books about LBD, this book is fun to read. Especially if you are dealing with this baffling disorder, reading about it can be difficult. We recommend that you only read a few pages of our LBD books at a time and digest that before you go on. Even take a break and read something lighter. Reading this book provides a good break. It keeps everything light and is designed to make you laugh.
Since 2011, I’ve been writing this weekly blog. It has actually provided a lot of the content for our second LBD book. We now have another LBD book in the works and hope to have it published by this time next year.
For information about Lewy body disorders, read our books:
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.
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