Tuesday, May 31, 2016

Progress Confirmed

All I did today was see Dr. Shoja.  It was a stimulating session. She has this magic program on her iPad that shows the brain in many different ways including animations that show what is going on under certain conditions such as having a seizure.

I saw where my seizures originate and in the context of brain anatomy and function. And it was so easy to understand why my limbs jerk and why I continue to have physical issues with my limbs. Like I said to Dr. Shoja: "This is all terribly interesting to my head. I just wish I were learning from seeing the symptoms in someone else instead of me."

The big shift with both Dr. Shoja and Christopher, my physiotherapist, is that both of them invited me to direct our sessions. They both invited me to take the "drivers seat" in my sessions — both of them, separately and independently. And I have taken the lead with my partners.

I asked her: "Having gone for four days without a seizure and without medications, I assume that the potential is there to have them again but can I assume that having seizures is behind me now?" And she said, "Yes." I was elated.

I learned so much today. Plus, Dr. Shoja's acknowledgement and encouragement of my progress is hugely therapeutic and fulfilling.

Progress Continues

"He was never the same after ... (fill in the blank with the crisis of your choice)."

I am shocked by my new deficiencies. Whereas walking was so easy for me prior to my crash in April, it is something that I have to do with caution now. I suspect I will eventually recover my capacity to wander endlessly, but for now it involved lots of rests and days off.

And my left arm is really spooky; it has a mind of its own. When I have seizures it goes crazy and it is dangerous for me and anyone around me. Now, it sometimes doesn't work and it certainly is weak.

Regardless, I get out now. My days of anxiety attacks are done. So on Monday, I went to Ming Wo to get a frying pan I need for crepes and a sauté pan to replace the one that got burnt during a seizure.

The density of the hybrid Dogwoods (official tree of BC)
is amazing. Dogwoods gleaming white everywhere.
The deep red dots slay me. This flower would likely appear
blue to insects. The shadows on the leaves and the dots help
insects zero in on the pollen. What brilliant design.
This is some kind of purple grass. It makes a beautiful
sound when you whoosh it together and it is stunning
how it moves in the wind. Its glossy skin shines in the sun. 
Another Dogwood.
Gunner and Paulownia leaves are huge and veiny. They
fascinate tourists and children and I love their texture. 

Monday, May 30, 2016

A Walk in the Park.

Sunday, I walked the seawall. It is something I used to do three times a week and it would routinely take me two-and-a-half hours, door to door. Yesterday took me five-and-three-quarter hours; I had to stop and rest often. I have neither endurance nor strength and I have no idea how I lost it so suddenly and dramatically. But I did it.

These are pistils off a citrus magnolia in a magnolia petal.
Look at the symmetry in the centre of this fragrant rose.
I met "Charlie," a visitor from San Francisco outside this
B&B and we had one of those lovely conversations with
a stranger that can be so rewarding and I never once had
a stutter — not on a single word!
Look at those little green balls in the centres.  Green and
purple were my favourite colour combination as a child. 
A close up of the hand-woven placemat I got one year at
the Circle Craft fair. I must get more. I love them. They
are made to a classic Quebecois design.
A better cross-section of my ice cream cake.

Sunday, May 29, 2016

Seizures Over ! & ?

I finally cut the cake to see the different ice-cream layers:
Pistachio, Lemon, Orange, Raspberry and Blueberry.

You never say to yourself, growing up, "Geez. I hope I never have seizures." I did spend a lot of time worrying that I'd get cancer but I never worried about any of the zillion other diseases that might some day afflict me. Now, of course, I hope I never have them again.

I believe that I am done with them. I am going forward believing that under extreme stress they could return, but I think this inaugural three-week experience with them is over.

Little steps: Yesterday Frani called, Niki visited and Dwight and Laura came over in the evening. Each contact caused initial tension that eventually dissipated; with each one, I had to, at some point, just stop talking and concentrate on calming myself.

I keep saying that the landscape keeps changing. It's ironic, but the people I love most are the scariest to be with because they are not afraid to ask questions and to reference my past.

My stutter comes and goes. It seems clear to me that one day it will be gone. Que sera, sera. But I would not be sad to have it for the rest of my life as it exists now. It is very infrequent. It's more like having the hiccups than having a stutter.

But my stutter has become my war medal that I wear proudly. It's a symbol of my survival through the worst medical experience of my life. Experiencing the symptoms of C-PTSD is a far worse medical experience than either kidney stones or a heart attack.

Saturday, May 28, 2016

Barnaby J. Dixon

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Meet Barnaby J. Dixon. I'd empty my soul and my pockets for this young man. I love his passion for puppetry, his unpretentious genius, his wit ("I'd give you a thumbs up but mine's up the puppet's bottom.") and his charming accent.

If he were my son, I'd be as proud of him as if I were Einstein's parent. Barnaby (what a great name!) is so, so charming. This is genius at work; his puppet is absolutely brilliant. I am going to learn how to follow him on the social networking site he mentions.

I get the sense of his having had great, encouraging parents when I listen to this young man and watch him. He seems so healthy as well as a rightfully proud of accomplishment.

At the end of the clip, you can see a wee bit of the engineering that makes the movements and therein lies this man's brilliance. I feel, in seeing this film, we are watching a young Jim Henson at work who will be, one day, as huge. Bless you, young Mr. Dixon, for making my day, and hats off to the people who grew you. They, and you, have done an inspiring job.

Barnaby's Twitter feed.

Friday, May 27, 2016

Victoire!

I did not have a seizure all day on Friday, not even when I went to bed (going to bed, for some reason, often brings on a seizure). I've been having seizures for just over two weeks, so Friday was a huge step forward.

Bruce called on Thursday and his call induced a seizure. Frani called Friday and I had to hang up on her or I was going to seize. For some reason, phone calls are also triggers so I am avoiding using the phone.

One day at a time ....

Triumph


Sometime very soon, I am going to cut into this ice-cream cake to reveal the layers. My hope is to see the layers well delineated so that the individual favours are available to those sharing the cake with me. It's a white chocolate shell over a thick pistachio ice-cream shell inside. And inside the pistachio are layers of lemon, orange, raspberry and blueberry ice-cream — all made by hand by moi with organic ingredients. I call it Festival des Glaces because that was the name of my favourite ice cream parlour when I lived in Nice. Soon I will post a photo of it cut.

Six Days in Isolation

Whilst in college, for a brief period I was in a car pool of two. The other guy was a fellow named Dale and he got us involved in volunteering at Gordon Neighbourhood House where we were charged with team-tagging the two-times-a-week sessions that Wayne (not his real name) required as part of his therapy.

Wayne suffered abuse from his parents and had been removed from his family. He was a wreck. He would not talk and it was explained to us how, basically, everything everywhere had become a trigger for Wayne. I feel that Wayne, today, would be diagnosed with C-PTSD too, as I have been.

I could not have a kinder, more generous and compassionate friend than my friend, Bruce. Yet talking to him yesterday, perhaps for too long, led to a seizure. Going to the store for food, led to two. I can therefore believe that had I not talked to anyone or gone out, I might only have had one seizure yesterday. Still, having only four and going out — all without taking my medications (that I do not want to take) — is an accomplishment.

I go back to Dr. Shoja next Wednesday. For the week between my last appointment and the next one, I have decided to decline some phone calls and keep others short, stay home and see no one. This is my decision; it's a defensive strategy that comes from my seizure experiences to date.

During a seizure, I cannot stand up. I lose control of all my muscles and not only that, I also  have convulsive movements. I cannot open my eyes, can't speak and I can do damage to my surroundings and myself due to the muscle spasms. Bruce says they last about five minutes.

Epileptics go into what is called a postictal state (PS) after their seizures. Often, so do I. In PS, you can barely speak, have great difficulty walking and one is severely cognitively compromised. Your eyes can open but they have a mind of their own. Some of my seizures are mild,. However, the more I have in a day, the worse they get. Tuesday and Wednesday of this week I spent most of my time either seizing or in PS.

So you can understand why I am in retreat. This is my plan, worked out with Dr. Shoja. If it works, it will result in me enjoying a far better quality of life than I've had for the past two weeks. And I will be able to take pride in being the architect of that improvement (with a heartfelt assist from Dr. Shoja).

When I was a kid I was quarantined. I can't remember why. I remember feeling like a prisoner as I do now. But the home I have now is a far nicer cell than were the rooms in which I was confined as a kid.

It's ironic that the kid that so wanted to belong is now a senior in a medically necessitated retreat from human contact. It's sad, too. However: I am determined to "win" this fight and a retreat is preferable to taking medications — at least for a week. On Wednesday, Dr. Shoja and I will decide how to proceed during the ensuing week.


Thursday, May 26, 2016

Prepared!

video

Chris is in the Driver's Seat

I’m kayaking in a beautiful tropical setting. There are several other kayakers, some of them guides, and the weather is fine. The only concern is a huge whirlpool.

It’s 6:45 am. I have been up since 4:30 when I awoke feeling pretty good. Twice this morning I have felt a slight drift toward the whirlpool but I managed to avoid it.

I am feeling “clearer” than I have in ten days. I think hearing that the seizures are, in fact, seizures and seeing Dr. Shoja’s complete lack of concern was tremendously therapeutic. To expand the kayaking metaphor, the new medication is my life jacket.

Both therapists have independently told me to take the lead as a response to the increasing severity of my symptoms. I can do that. I have felt so overwhelmed by this crisis that I surrendered myself to them. But no more; I am henceforth their partner. I am rejecting the doctor/patient superior/inferior dynamic.

So I am taking a “time out.” From today until (and including) Monday, I am seeing no one. I may get out, I may not; I know that I can go out but I will take each day as it comes.

I have cancelled or moved all future appointments. My guideline — I don’t believe in hard and fast rules — is to only see one person a day and to have a day alone in between my dates with doctors or friends. And I am never going to have a physiotherapy appointment on the same day or a day proximate to a day when I see Dr. Shoja either.

And finally, on therapy days I am going to take my meds. It’s pretty clear that they are major triggers of seiizures. 

I am so going to get better. Like Ms. Rivers says, “It doesn’t get better, you get better.”

Nature and animals are my other medicines:

I passed this peony on my way to a physiotherapy appointment. 
Leon is, perhaps, my most powerful C-PTSD antidote.

Wednesday, May 25, 2016

Seize the Day

Clonazepam. That's the name of my new medication — my teeny weeny little blue pills. I feel so Valley of the Dolls.

I really admire Dr. Shoja. I feel truly blessed to have a psychiatrist who is so invested in collaboration. I like how she puts me in the driver's seat. My seizures freak my friends out. They see me so helpless, they want to protect me, their reaction is to take charge but in doing so they disempower me.

Dr. Shoja was not at all freaked out by my seizures. She has seizure disorders before and she has seen brain scans of people having seizures. like mine. She knows what is happening in my brain and it felt so incredibly wonderful to see her so unflustered by my two seizures in front of her.

Clonazepam is a drug I can take on days when I feel the seizures coming on. I do not have to take it every day. We do not expect to stop them, but we expect to reduce their number and intensity. I can get through the mild ones quite handily.

The more severe ones are very dramatic. I do not want to have one of them alone in public, but I build up to the bad ones. Characteristically, I have several minor ones before the big ones come. So now, if I have a two mild ones, I can take a pill and know no major fall-down-limp, convulsive one is going to happen.

There is an "abnormality" in the brains of those of us who have seizures under stress. I have been feeling weak and a bit ashamed of the things that have been happening to me, but Dr. Shoja made it very clear to me (bless her professional heart) that this is not my fault by explaining what scans have revealed about seizures characterized by jerky spasms.

Clonazepam is for my specific type of seizure. It felt very good to hear her say this because I realized that there are so many people with this kind of seizure disorder that there is a specific medication for it. It feels great not to be alone with my challenge. You have no idea what it is like.

The only sensory thing that keeps working is my hearing. My eyes close or lose focus or dart around, I go limp and I can't talk or move. I am like a deflated balloon. Then I come out of the deep zone into the fog. In the fog, I drift in and out of my ability to speak. I cannot move and cognition is severely compromised — very severely. Then I come out of it either very, very slowly or with startling suddenness.

Last night, after having had about ten of them, I had a cluster attack. That is just one after the other after the other and I fall deep, deep into desperation and fear. I get very scared I am going to have a heart attack. It's feels a little like when friends, when you were young, held you under water against your will.

So when I came out of Dr. Shoja's appointment today, I asked Bruce to let me come home alone. I felt I could do it and I did. I felt so proud of myself. I feel my world is bigger.

Tuesday, May 24, 2016

Are They Seizures?

Well, I am about to go to bed. It is 10:30 and I've had fourteen episodes today. My friend, Frani, is an emergency nurse. She was here tonight and saw a lot of my episodes. She thinks they are more seizure-like than anxiety based.

They have made me see the risks. They wanted to take me to the hospital tonight but we talked and here I am staying home. But no more baths, no more candle lighting and no going out alone. They have made me see that I cannot go ahead with the dinner for my friends this weekend.

They have also talked to Bruce. They have asked him to escort me to Dr. Shoja and he is going to relate their anxiety about my safety. Everyone is worried about my hiring myself here alone. I flail during the episodes and I often collapse. They are worried I am going to hurt my head.

Here I am writing about my health, just like I didn't want to do. But it lets friends who life afar know what is happening because I cannot answer the phone to talk to them.

Speech Therapy Ends Today

Dr. Rammage is lovely. She witnessed two of my seizure-like attacks — presumably a new form of anxiety attack — and is writing to Dr. Shoja in advance of my appointment with Dr. S. tomorrow describe what she saw.

Dr. Rammage feels there is nothing she can do for me. She says my fate is in the (good) hands of Dr. Shoja, whose therapy will restore my speech.

It's 4:00 pm. I've had eight of these attacks today already.

Speech Therapy Starts Today

Big day today: My first speech therapy session happens at 9:30 am. Bruce, my voice and into-seizure guard, is coming to take me.


My friends, John & Bunny, came and took me for lunch at Vancouver's best-kept secret, the deck of the Jericho Sailing Club clubhouse where they have good beach food. I had tacos. I can say one word at a time with about a second gap between them, so I could say the odd thing. My friends are very kind. And with those dark glasses, you cannot tell that most of the time, my eyes are closed. Bright lights and loud sounds cause seizures.


When J&B sat on a log to chat, I picked some leaves that were growing in the area and took this photo. Everyone knows that nature heals, but I feel that in the extreme. Thant God for beauty. It is such a relief for me to take in nature when I am in this condition.


And this is a shot of the interior of my practice ice cream dome cake. Wait until you see the real one! This one, however, is delicious. There are five flavours in it. I used up all my left-over bits from making the showpiece one that is for my dinner this coming Saturday.

Monday, May 23, 2016

Me and Stephen Hawking, We're Like That!

video

I now know that I have had C-PTSD most of my life. Symptoms emerged in my mid-forties; they were mild and sporadic. I became clinical on April 9th of this year. I’ve been in therapy for six weeks but my symptoms are worse than ever.

I have seizures now — lots of them unless I stay home alone. I do not answer the phone because I cannot talk at all.

My friend Bruce is coming to escort me to my first speech therapy session tomorrow and to my psychiatrist on Wednesday. I have asked him to come into my sessions with me to speak for me as he has been witnessing the seizures. We are anticipating talking about my taking some kind of medication.

I am not sad about this — for the most part that’s true; I’ve had my moments. Thankfully, the body pain has gone. If I don’t talk, I don’t stutter. If I try to talk, it leads to a seizure. 

The seizures exhaust me. They are brutal to endure and I go to a very strange mental space. I become non-responsive and am prone to jerky physical movements.

Sunday, May 22, 2016

Video Update; May 22

video

Joan Rivers, in response to the campaign, "It Gets Better," said: "No. It doesn't get better. You get better." I find that inspiring and that is why I love her still. She knows what it is to face a challenge, she's an inspiringly strong broad and she was funny!

Friday, May 20, 2016

Official, Knowledgable and Final Diagnosis

(I am talking about myself in this post because I want friends afar to have this answer that explains so much of the past several years.)

I went to Dr. Shoja, my psychiatrist, today and she had a surprise for me — a diagnosis. After twelve hours of consultation, she has sent a report to my GP diagnosing me with complex post-traumatic stress disorder (C-PTSD).

PTSD occurs in response to a single short-term or longer-term experience. Here's the opening sentence of Wiki's complex PTSD: page:
Complex post-traumatic stress disorder (C-PTSD), also known as developmental trauma disorder (DTD) or complex trauma,] is a proposed diagnostic term for a set of symptoms resulting from prolonged stress of a social and/or interpersonal nature, especially in the context of interpersonal dependence. Subjects displaying traits associated with C-PTSD include victims of chronic maltreatment by caregivers, as well as hostages, prisoners of war, concentration camp survivors, and survivors of some religious cults.
Walking home, it felt good to finally have an answer that I makes sense to me — especially one that comes from a trained professional. It's a huge relief to have an answer that people can grasp for those who ask what's wrong.

I am terribly pleased that the name for my disease places cause (blame) externally; I felt guilty about having what I thought was a breakdown. I felt weak and ashamed. But not with a C-PTSD diagnosis.  And I need an answer for people because my symptoms are overwhelming me. I am not exaggerating. Last night my symptoms were so severe I had to stop the clerks from calling 911.

Dr. Shoja also said, "It can get worse before it gets better." That, too, was a gift. I hear, first and foremost, "It gets better." It makes it easier to accept these paralyzing seizures that fill my day all the time I'm outside my home.

This is truly brutal my friends. But the fact that my condition has a name means that I am part of a community; there are enough people with my experience to cause psychiatry to name us and define us.

Wednesday, May 18, 2016

Captain Fantastic

video

Kitty Genovese: I Remember

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A practice version of "Festival des Glaces."


I made a small ice cream dome of many flavours ( all made by me with organic fruit) domed so that I could practice the coating I want to use at an upcoming dinner. It’s white chocolate with ground pistachio on top and I am super happy with the result. I’ll probably pipe vanilla whipping cream around the base with tiny mint leaves and larger-sized crushed pistachios when I present it on the table—the real one, not this practice one.