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July 23, 2014

Joining us for our monthly APBD chat group was the husband of a woman who’s had the disease for 12 years. They live in Israel, near Tel Aviv. It was four in the morning. More frequently than not these days the warning siren of an incoming rocket blasts. That’s the cue to run quickly for the underground shelter. 
Run
Quickly
APBD
A dozen years.
“Sometimes we can’t get there in time,” he said. “But life goes on. Life goes on.”

That is until it doesn’t.

Joining us for our monthly APBD chat group was the husband of a woman who’s had the disease for 12 years. They live in Israel, near Tel Aviv. It was four in the morning. More frequently than not these days the warning siren of an incoming rocket blasts. That’s the cue to run quickly for the underground shelter.
Run
Quickly
APBD
A dozen years.
“Sometimes we can’t get there in time,” he said. “But life goes on. Life goes on.”

That is until it doesn’t.
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July 22, 2014

Welcome to Princess Beach on Prince Street

Thank goodness for this sweet place to relax and restore. Its finally done and just in the nick of time. The day started off innocuously enough but by this evening devolved thoroughly.

First of all I didn’t sleep enough, recipe for trouble. After a nice morning swim, a lovely yoga of long held supine poses I took off with Moki on errands. 

First to drop off return items at my neighborhood UPS shop. Onward to the phone store for a simple landline. I picked up a hard wired style phone for emergencies. 

Third stop Berkeley Bowl which I really dislike but was out of tea and they sell in bulk. Half way home I realize I wasn’t wearing my prescription sunglasses. Couldn’t find at the Bowl, bummer. 

Next I walk in the house, my phone rings and I ask to have a moment to collect myself with which I catch my foot, must have been a loose molecule, and flip back into the door which crashes shut. “Be right there.” Lol.

After we hang up, I go to the garden to look around. I check the baby veggies. One kale withered. I pull the hose over and of course trip on another molecule. My hand squeezes the nozzle. I get a bath. Enough of the hose, I coil it back on its stand.

On my way inside I see Moki’s water bowl is low. Rather than using the hose I go inside fill my electric kettle and start walking toward the bowl outside. Yes a molecule. Only this is a disaster. It’s a glass kettle and I fly with it leaving what looks like a forensic scene. Glass and water everywhere. And then Moki’s coming to my aid. But to do so he will be in a mine field of glass shards. I make him sit stay away from me but his job is to come when I fall. Now both of us are upset and shaking. I crab crawl to a handy towel and sit on it to gather the shards with a doubled over plastic bag. The glass is everywhere, water is everywhere ( but the water bowl). Twenty minutes later I’m done. It needs vacuuming and luckily that will happen tomorrow. God I wish I could drink…

Moki and I go collapse on the bed. I realize its 7, he needs to eat, I should also. After pouring him a lip smacking bowl of kibbles I decide to heat the soup I made yesterday and have popcorn with it. I put a small handful of popcorn grains in a brown paper bag in the microwave. I walk into another room,  hear it popping but notice a burnt smell. I pull out the bag and the thing goes up in flames in my hand. I throw it in the sink turn the water on and narrowly avert a real disaster. 

Enough. I pinch myself, I’m alive to tell the tale. Princess Beach I’m coming.

Welcome to Princess Beach on Prince Street

Thank goodness for this sweet place to relax and restore. Its finally done and just in the nick of time. The day started off innocuously enough but by this evening devolved thoroughly.

First of all I didn’t sleep enough, recipe for trouble. After a nice morning swim, a lovely yoga of long held supine poses I took off with Moki on errands.

First to drop off return items at my neighborhood UPS shop. Onward to the phone store for a simple landline. I picked up a hard wired style phone for emergencies.

Third stop Berkeley Bowl which I really dislike but was out of tea and they sell in bulk. Half way home I realize I wasn’t wearing my prescription sunglasses. Couldn’t find at the Bowl, bummer.

Next I walk in the house, my phone rings and I ask to have a moment to collect myself with which I catch my foot, must have been a loose molecule, and flip back into the door which crashes shut. “Be right there.” Lol.

After we hang up, I go to the garden to look around. I check the baby veggies. One kale withered. I pull the hose over and of course trip on another molecule. My hand squeezes the nozzle. I get a bath. Enough of the hose, I coil it back on its stand.

On my way inside I see Moki’s water bowl is low. Rather than using the hose I go inside fill my electric kettle and start walking toward the bowl outside. Yes a molecule. Only this is a disaster. It’s a glass kettle and I fly with it leaving what looks like a forensic scene. Glass and water everywhere. And then Moki’s coming to my aid. But to do so he will be in a mine field of glass shards. I make him sit stay away from me but his job is to come when I fall. Now both of us are upset and shaking. I crab crawl to a handy towel and sit on it to gather the shards with a doubled over plastic bag. The glass is everywhere, water is everywhere ( but the water bowl). Twenty minutes later I’m done. It needs vacuuming and luckily that will happen tomorrow. God I wish I could drink…

Moki and I go collapse on the bed. I realize its 7, he needs to eat, I should also. After pouring him a lip smacking bowl of kibbles I decide to heat the soup I made yesterday and have popcorn with it. I put a small handful of popcorn grains in a brown paper bag in the microwave. I walk into another room, hear it popping but notice a burnt smell. I pull out the bag and the thing goes up in flames in my hand. I throw it in the sink turn the water on and narrowly avert a real disaster.

Enough. I pinch myself, I’m alive to tell the tale. Princess Beach I’m coming.

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July 8, 2014

Anonymous said: Can't figure out how to post on the phone. You are such a brave woman -- we are pulling for you everyday. Love cousin Joel

Thank you!

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July 8, 2014

Up and Walking

I’m finding my way back to my legs and taking them around my new neighborhood. The other day Moki and I walked to the local movie house. Yes a local movie house where first run releases as well as HD telecasts of National Theatre productions are offered. We went on to the ATM a little farther up the road. All tolled it was a delightful half mile round trip. 

Then last night Rob and I resumed our quest for gluten-free pizza, now on the “right” side of the Bay. Zachary’s Chicago deep dish in nearby Rockridge has thin crust 11” daily specials and build your own style. Not a fan of that too much crust style of Chicago pie anyhow, we had thin crust Pizza Bianca - fresh mozzarella, ricotta, lemon zest. Perfect with the crispy salad dressed in house-made roasted red pepper vinaigrette. 

Between new regime of swims, water aerobics, walks, PT, sense of place, acceptance of change/loss I do believe I’m stabilizing my way to home sweet/savory home. Move over you f##ing disease.

Up and Walking

I’m finding my way back to my legs and taking them around my new neighborhood. The other day Moki and I walked to the local movie house. Yes a local movie house where first run releases as well as HD telecasts of National Theatre productions are offered. We went on to the ATM a little farther up the road. All tolled it was a delightful half mile round trip.

Then last night Rob and I resumed our quest for gluten-free pizza, now on the “right” side of the Bay. Zachary’s Chicago deep dish in nearby Rockridge has thin crust 11” daily specials and build your own style. Not a fan of that too much crust style of Chicago pie anyhow, we had thin crust Pizza Bianca - fresh mozzarella, ricotta, lemon zest. Perfect with the crispy salad dressed in house-made roasted red pepper vinaigrette.

Between new regime of swims, water aerobics, walks, PT, sense of place, acceptance of change/loss I do believe I’m stabilizing my way to home sweet/savory home. Move over you f##ing disease.

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June 25, 2014

Pony Express
Besides hopping on our ponies and riding the steppes to spread the word and better understand APBD check out our brochure at www.apbdrf.org. And when you buy something on Amazon you can support us simply by clicking smile.amazon.com. “Smile” sends free money to APBD Research Foundation. Giddy up!

Pony Express
Besides hopping on our ponies and riding the steppes to spread the word and better understand APBD check out our brochure at www.apbdrf.org. And when you buy something on Amazon you can support us simply by clicking smile.amazon.com. “Smile” sends free money to APBD Research Foundation. Giddy up!

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June 20, 2014

View from the breakfast room to patio as I enjoy a mostly veggie scramble w touch of egg on last morning of Dallas Clinical Trial check-in. Other folks in the room include the Baptist Conventioneers and Dickies garment group, Theology for Disabilities leaves today, and tomorrow the Jehovah’ Witness convene. It is so much nicer here with a kitchenette, windows that open, and only 150 rooms. Yes the Hyatt House in Lincoln Park is it. Also they make breakfast and have a cocktail hour with salad, plus nicely landscaped pool patio. Yesterday was chockablock appointments: labs- same nice blood draw ladies and they even remembered me cause “you’re always so pleasant,” and my fluffy hair. On to 6-minute Walk Test with Leslie. I clocked not best, not worst but mid-range. Considering how awful I feel that was a lift. Next with Scott for Gait Analysis. I did ok there, still could balance -barely- with eyes closed and legs shoulder width but not with feet touching. I haven’t once actually so no disappointment. Wondered if I could do the laps without my poles and surprised myself doing so. But it feels as if I sink when I walk, the ground more sand than solid; a typical sensation for us APBDers. Very unsettling, imagine noodle/steel-rod legs pushing through quicksand. Metaphor? Once finished it was on to the kind Dr Schiffmann. He answered questions confirmed my belief that the stress I have gone through is the worst possible thing: move/heartbreak. I may gain some ground once I heal. That will be my job. And darn that the pharmacist didn’t accidentally give me placebo instead of Triheptanoin oil. It’s not working doc… As usual I did the stairs, strength, toe-toes, walking, getting up from ground, and my favorite part the three things to remember:
Yellow steamboat
Black Labrador
55 W. Congressional Lane, Apt 81

And as I get ready to leave, I refer to words of fellow tribeswoman, “CHEER up. We don’t have ALS, Parkinson’s etc etc.” She has a point, and now I have an appointment with packing and an airport.

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June 18, 2014

A lovely Sunday evening dinner gathering with dear friends. What better way to mend a broken heart?

A lovely Sunday evening dinner gathering with dear friends. What better way to mend a broken heart?

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June 15, 2014

Ménage a Trois

It wasn’t that she was particularly conservative about sex, but who in their right mind wants to have a ménage a trios with a lousy disease? And thus she left me. Yesterday sprinting from the corner to the BART and gone. How was that for metaphor? I sat listening to my heart pull out of the station. Two weeks ago we frolicked in warm ocean, loving, laughing. Not anymore. Welcome to love desert — sand, salt, burn. Collateral from this progressive, degenerative disease. I can’t even drink or do drugs. Thanks APBD. Of course, I don’t blame her, if I could break up with me I would.

Ménage a Trois

It wasn’t that she was particularly conservative about sex, but who in their right mind wants to have a ménage a trios with a lousy disease? And thus she left me. Yesterday sprinting from the corner to the BART and gone. How was that for metaphor? I sat listening to my heart pull out of the station. Two weeks ago we frolicked in warm ocean, loving, laughing. Not anymore. Welcome to love desert — sand, salt, burn. Collateral from this progressive, degenerative disease. I can’t even drink or do drugs. Thanks APBD. Of course, I don’t blame her, if I could break up with me I would.

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June 9, 2014

Inch by Inch

"… life is a cinch but yard by yard life is hard." Daily I inch, daily I adapt. But if and when I rub up against "yard by yard" that’s another story. I had no idea until this trip to Molokai when the reality of that yardstick slapped me hard, slapped me mean, slapped me down.

Last year I even had a broken foot, was in the big black boot. But I negotiated quite well, scooted down the crumbly rocky steps on my butt and easily pushed up from the ground after removing the monster shoe. Alternatively I wiggled to where the sea let me float and then swim. I walked the lawn, negotiated the steps to/from and around the house. But not this time. Whack, head snapping slam into the wall of the degradation.

The vigilance to avoid a fall, the effort to transition from sand to stand—how else to get out of the water, or to sit with control—how else to get into the water— were exhausting, disheartening, depleting acts. I’m loosing battles and I fear no amount of white flag will end the war against this degenerative, progressive disease wages upon me. 

What more can I do? Where else can I turn? As I looked out to sea on my last night I wondered will I ever return to Molokai? I wondered what will I do. By the time I boarded the plane the next morning tears streamed; bitter, salty how will I continue despair gripped. And continues daily as simple tasks—standing on line, shopping for groceries, walking the block—feel daunting. 

I work so hard, fight for my independence yet I backslide, diminish. I remember six years ago when symptoms first manifest, when the initials APBD were just part of the alphabet, when I had such hope. But now hope slips like sand through my heart.

Inch by Inch

"… life is a cinch but yard by yard life is hard." Daily I inch, daily I adapt. But if and when I rub up against "yard by yard" that’s another story. I had no idea until this trip to Molokai when the reality of that yardstick slapped me hard, slapped me mean, slapped me down.

Last year I even had a broken foot, was in the big black boot. But I negotiated quite well, scooted down the crumbly rocky steps on my butt and easily pushed up from the ground after removing the monster shoe. Alternatively I wiggled to where the sea let me float and then swim. I walked the lawn, negotiated the steps to/from and around the house. But not this time. Whack, head snapping slam into the wall of the degradation.

The vigilance to avoid a fall, the effort to transition from sand to stand—how else to get out of the water, or to sit with control—how else to get into the water— were exhausting, disheartening, depleting acts. I’m loosing battles and I fear no amount of white flag will end the war against this degenerative, progressive disease wages upon me.

What more can I do? Where else can I turn? As I looked out to sea on my last night I wondered will I ever return to Molokai? I wondered what will I do. By the time I boarded the plane the next morning tears streamed; bitter, salty how will I continue despair gripped. And continues daily as simple tasks—standing on line, shopping for groceries, walking the block—feel daunting.

I work so hard, fight for my independence yet I backslide, diminish. I remember six years ago when symptoms first manifest, when the initials APBD were just part of the alphabet, when I had such hope. But now hope slips like sand through my heart.

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May 31, 2014

STORMS

Weather storms a little each day and we follow suit in the kitchen: cooking up storms. Feast upon feast a fine finale to days of delicious play and rest. Trade winds whoosh keeping the kitchen comfortable as two happy, highly self-entertaining vegetarian adventurers go at it.

Since our first night when we were so exhausted dinner was papaya and popcorn we’ve had in order of appearance: homage to Italy with GF pesto pasta and green + wax beans; Mexican fiesta of guacamole, salsa, black beans, chopped lettuces, tortillas; GF pasta w grilled veggies, tomato sauce and salad; Punjab chalay with brown rice, dal and refreshing raita- thank goodness cause the chalay was hella hot; omelette with herbs and salad; Indian eggplant curry, dal, brown rice, raita; French lentil salad with cucumber and tomato garnish. Tonight we are making pizza on the grill and Caesar salad.

A note about the pesto. Last year while here we discovered Kumu farms where every morning the farmers bring fresh organic produce in from the fields. Some whip up delicious prepared items such as the basil, olive oil, macadamia nut and garlic pesto. When on Molokai a must.

And look at my little soldiers of oil lined up ready to battle the disease but I believe heavier artillery is required. Damn but the victory of fine dining is sweet.

STORMS

Weather storms a little each day and we follow suit in the kitchen: cooking up storms. Feast upon feast a fine finale to days of delicious play and rest. Trade winds whoosh keeping the kitchen comfortable as two happy, highly self-entertaining vegetarian adventurers go at it.

Since our first night when we were so exhausted dinner was papaya and popcorn we’ve had in order of appearance: homage to Italy with GF pesto pasta and green + wax beans; Mexican fiesta of guacamole, salsa, black beans, chopped lettuces, tortillas; GF pasta w grilled veggies, tomato sauce and salad; Punjab chalay with brown rice, dal and refreshing raita- thank goodness cause the chalay was hella hot; omelette with herbs and salad; Indian eggplant curry, dal, brown rice, raita; French lentil salad with cucumber and tomato garnish. Tonight we are making pizza on the grill and Caesar salad.

A note about the pesto. Last year while here we discovered Kumu farms where every morning the farmers bring fresh organic produce in from the fields. Some whip up delicious prepared items such as the basil, olive oil, macadamia nut and garlic pesto. When on Molokai a must.

And look at my little soldiers of oil lined up ready to battle the disease but I believe heavier artillery is required. Damn but the victory of fine dining is sweet.

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