travel:
verb 1. make a journey, typically of some length or abroad.
basketball 2. take more than the allowed number of steps (typically two) while holding the ball without dribbling it.
noun 3. the action of traveling, typically abroad
I've been thinking a lot about travel lately. About every other week, I have been getting in my car and driving the 6-hour journey south to be with my parents for a week-long visit. My route is typically the same each time. I take a back road which allows me to avoid the inevitable traffic jams in Northern Virginia. I am happy to add 30 minutes to the trip if it means avoiding I-95. Driving back home and onto the beltway is always a bear. So, I gird myself up for that. I take deep breaths, play good music, and tell myself over and over that I will soon enough be home.
Fortunately, I love to drive. It is time alone to gather my thoughts. And my feelings. It's time to reflect and time to move forward.
My mom is doing her own kind of travel right now. Unfortunately, she does not have the luxury to choose the route she takes. There is no definitive map. Her travel is fraught with all sorts of dangers. Potholes. Detours. Fog. The PCA road she travels on is bumpy and full of twists and turns. No navigation system. No signposts or speed limit signs. And, it is difficult to know where the road will go next. It must be absolutely frightening. It IS absolutely frightening.
There is so LITTLE known and understood about Posterior Cortical Atrophy. This is what makes it incredibly frustrating for those impacted by it. If you look it up on the Alzheimers website, these are some of the statements made:
"there is no established diagnostic criteria"... "misdiagnosis of PCA is common"... "there are no treatments known to halt or slow its progression."
As you can imagine, while we are trying to educate ourselves about this disease (sometimes reading through scientific articles with a dictionary close at hand), we are also having to do what we can to educate her doctors. I am astounded that when my mom received the diagnosis of PCA, her top-notch neurologist sent her and my 85-year old dad home with the only instructions being to make a follow-up appointment in six months. No pamphlet to read. No information about what to expect next and what to do when those things occur. No referrals to other specialists. So we have just been having to kind of figure out this thing on our own. I can feel a rant coming on, so...
Back to travel.
In MY travel on this PCA road, I have been greatly aided by the wisdom, experience, and care of a group of individuals I have never met. They have been serving as my GPS on this journey. After multiple searches online for information about PCA, I found an online support group for folks dealing with PCA. Most of the members are family and caregivers, but there are also some folks who themselves have the disease and are still cognizant enough to actively participate. The support group is full of love and empathy... and honesty. Finding people who understand has been invaluable.
TRAVEL: make a journey, typically of some length or abroad. Yes, this feels like both. This travel feels long. So many miles, so many unexpected detours. And we are definitely traveling abroad. We aren't familiar with this place. We know little about it and have so much to learn. We certainly aren't fluent in the language - but we are working at it. The customs are different and strange to us - but we are adjusting. My hope is that through our travel on this road, we might make it a little easier for someone else. Draw out a map. Translate the language.
In the meantime, the best we can do for my mom is make her comfortable for her travel. She needs to feel safe. She needs to know that we are trustworthy travel guides. As she forgets who we are, we need to make sure that we are patient and comforting and loving and kind and familiar. Which leads me to...
Carolina basketball. It can't come soon enough. The last time I was home, my mom asked several times when Carolina basketball would start. "Why can't we watch a game now?" "Oh, I can't wait to watch a basketball game!" "We have a great coach... Roy!" I am hoping when the season starts, my mom will still have this enthusiasm. I am hoping that watching a basketball game will give her some great moments of familiarity and joy. I am hoping.
It seems to me, over the past several years, that basketball refs turn a blind eye to travel violations. I have definitely seen players hold on to the ball while taking three or four steps. Nothing called. And, that's okay by me. I truly understand the players' need to hold on to the ball. To hold on to what you have in that moment. I GET this meaning of travel.
verb 1. make a journey, typically of some length or abroad.
basketball 2. take more than the allowed number of steps (typically two) while holding the ball without dribbling it.
noun 3. the action of traveling, typically abroad
I've been thinking a lot about travel lately. About every other week, I have been getting in my car and driving the 6-hour journey south to be with my parents for a week-long visit. My route is typically the same each time. I take a back road which allows me to avoid the inevitable traffic jams in Northern Virginia. I am happy to add 30 minutes to the trip if it means avoiding I-95. Driving back home and onto the beltway is always a bear. So, I gird myself up for that. I take deep breaths, play good music, and tell myself over and over that I will soon enough be home.
Fortunately, I love to drive. It is time alone to gather my thoughts. And my feelings. It's time to reflect and time to move forward.My mom is doing her own kind of travel right now. Unfortunately, she does not have the luxury to choose the route she takes. There is no definitive map. Her travel is fraught with all sorts of dangers. Potholes. Detours. Fog. The PCA road she travels on is bumpy and full of twists and turns. No navigation system. No signposts or speed limit signs. And, it is difficult to know where the road will go next. It must be absolutely frightening. It IS absolutely frightening.
There is so LITTLE known and understood about Posterior Cortical Atrophy. This is what makes it incredibly frustrating for those impacted by it. If you look it up on the Alzheimers website, these are some of the statements made:
"there is no established diagnostic criteria"... "misdiagnosis of PCA is common"... "there are no treatments known to halt or slow its progression."
As you can imagine, while we are trying to educate ourselves about this disease (sometimes reading through scientific articles with a dictionary close at hand), we are also having to do what we can to educate her doctors. I am astounded that when my mom received the diagnosis of PCA, her top-notch neurologist sent her and my 85-year old dad home with the only instructions being to make a follow-up appointment in six months. No pamphlet to read. No information about what to expect next and what to do when those things occur. No referrals to other specialists. So we have just been having to kind of figure out this thing on our own. I can feel a rant coming on, so...
Back to travel.
In MY travel on this PCA road, I have been greatly aided by the wisdom, experience, and care of a group of individuals I have never met. They have been serving as my GPS on this journey. After multiple searches online for information about PCA, I found an online support group for folks dealing with PCA. Most of the members are family and caregivers, but there are also some folks who themselves have the disease and are still cognizant enough to actively participate. The support group is full of love and empathy... and honesty. Finding people who understand has been invaluable.
TRAVEL: make a journey, typically of some length or abroad. Yes, this feels like both. This travel feels long. So many miles, so many unexpected detours. And we are definitely traveling abroad. We aren't familiar with this place. We know little about it and have so much to learn. We certainly aren't fluent in the language - but we are working at it. The customs are different and strange to us - but we are adjusting. My hope is that through our travel on this road, we might make it a little easier for someone else. Draw out a map. Translate the language. In the meantime, the best we can do for my mom is make her comfortable for her travel. She needs to feel safe. She needs to know that we are trustworthy travel guides. As she forgets who we are, we need to make sure that we are patient and comforting and loving and kind and familiar. Which leads me to...
Carolina basketball. It can't come soon enough. The last time I was home, my mom asked several times when Carolina basketball would start. "Why can't we watch a game now?" "Oh, I can't wait to watch a basketball game!" "We have a great coach... Roy!" I am hoping when the season starts, my mom will still have this enthusiasm. I am hoping that watching a basketball game will give her some great moments of familiarity and joy. I am hoping.
It seems to me, over the past several years, that basketball refs turn a blind eye to travel violations. I have definitely seen players hold on to the ball while taking three or four steps. Nothing called. And, that's okay by me. I truly understand the players' need to hold on to the ball. To hold on to what you have in that moment. I GET this meaning of travel.
Beautiful Becky.
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