Hi Photogs!
Just wanted to let all my photographer friends--from whom I've learned so much over the last few years--know that I haven't fallen off
the ends of the earth. I suppose in some small way I am a casualty of the primary wars, but there has also been something else going
on in my house.
A couple of years ago my husband and I were on a Baltic cruise--after a trip to visit our youngest son who was in Berlin on a Fulbright scholarship--
and my husband threw himself out of bed in our cabin, getting away from a tsunami that was about to overtake him in a dream. It wasn't the first
time he'd rather ferociously acted out a dream (I'd been hit a couple of times, never seriously hurt). There had been other things. He didn't close
cabinet doors or turn off lights, left his trunk or car door open half a dozen times in as many months requiring a jump start for the dead car battery,
needed numerous reminders occasionally about plans, had difficulty remembering how to do a simple process on the computer (like attach a photo to
an e-mail), was dizzy when he would stand up, had stiff muscles and difficulty walking or getting up from a chair, and sometimes his voice would lose projection and he could hardly be heard.
About six months later--after I finally started sleeping in another room in order to escape the snoring and the fear of being hit in the middle of the night
by a 6'1" 225 lb+ man who could pack a punch--he woke me up because he had knocked over the lamp on the nightstand while acting out a dream, broken
the light bulb and was insistent on knowing how to use the vacuum to clean it up. It was bizarre. Really bizarre.
I contacted our primary care doc and told him about a number of things that had been happening and asked him if he thought this was normal aging (my husband
was 72 at the time). The answer was 'no' so we went to see him. In the meantime, I shared some of the stranger things with another group of friends and two of
them told me they'd had parents who had exhibited similar symptoms and finally been diagnosed with Lewy Body Dementia: which has been described as Alzheimer's
meets Parkinson's. I started researching on-line, and damn if the symptoms didn't fit. So, we asked for a referral to a neurologist--a specific neurologist in our
own backyard at UNC-Chapel Hill who happens to be on the scientific advisory council for the Lewy Body Dementia Association https://www.lbda.org/
Long story short, last week we saw that neurologist on a routine follow-up appointment and my worst fears have now been confirmed. My husband has been given
the diagnosis of possible incipient Lewy Body Dementia, after having been followed by this neurologist now for over a year. For those who want to find out more
about this disease--that is very common and very difficult to diagnose--check the website. It is a progressive, incurable degenerative neurological disease (what Robin Williams had).
We are leaving later this week on a trip to California for a family wedding and going on to L. A. to visit some friends, then take the train to Seattle for a couple of days
and then the ferry to Victoria. I suspect this may be the last trip of its kind for us. Travel has been an important part of our lives since we first met, and during the 1984
Olympics--when we'd known each other about 2 months--we decided to take off for England 3 weeks later. The irony has not escaped me that we may be taking the last trip
of this type together while the Olympics are on this year. It has become very stressful to travel with my husband: he loses balance easily and doesn't see environmental
hazards like steps, uneven pavement, etc--and in fact took a really hard fall the first night we were in Charleston for the Spoleto Festival in June. He took another hard
fall a couple of weeks ago while out house hunting with our oldest son. I have to help him with packing (planning what to wear is difficult); he got lost in London when we were
there in January and I didn't know whether to call the police or go stand on a street corner looking for him when he hadn't shown up an hour after I left him in the grocery store. It was a familiar neighborhood--where we've stayed many times in the last 30 years--but he didn't have the address written down and didn't remember the landmarks for a 5 minute walk from the grocery store to the apartment where we were staying. He gets turned around easily and spatially disoriented. He tires easily and needs daily--sometimes twice daily--naps.
The thing about LBD is that symptoms come and go. Some days you'd think there is nothing wrong with him. Then he'll have days where he's just "off" and other days where there
clearly is something not right. The neurologist we are seeing takes the approach of doing everything possible to prolong the early stages by working to establish good sleep every night, use
meds that help delay cognitive decline, and avoid meds that have clearly shown to make symptoms worse in people with LBD.
So. Here we are. I will have my cameras with me on this trip and will hope to continue to be able to play with them at home.
If anyone wants to get in touch, elleng and CaliforniaPeggy know me on fb, and Mira has my e-mail address.
Be well, my friends. Carpe diem.
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I am so sorry to read this.
Please don't hesitate to ask for help, wherever you are...You need support too!
and your husband. I hope you both are able to enjoy this trip. Remember to take care of yourself along with taking care of your hubby.
Wishing you and your husband the best.
I wish all the best for you and your husband. Enjoy your trip as much as you can. Life is so precious.
I'll be waving at all the Amtrak trains I see heading north through Portland later this week...If you see someone waving as you pass through, who knows? Might be me saying Hi!
I waved coming through! Not much in the way of shots. But I did like this shot the other side of Portland of the colorful houses/boats on the river.
