Trumptoons

Hope or Acceptance

Last April, I woke up and couldn’t speak without a severe stutter. The medical system led me to a psychiatrist who decided I had C-PTSD.  

I started seeing the psychiatrist the system provided and I could not be happier with their choice. I have total faith and trust in her. And during the ten months we’ve been talking, I consulted three different speech therapists about my stutter.

My life since April is nothing at all like it used to be. There have been crippling, overwhelming anxiety attacks, seizures—sometimes up to fifteen a day and there have been changes in my strength, endurance, mobility and stability.

Throughout it all, I assumed all my physical issues—including the stuttering—were due to C-PTSD.

Then on Labour Day I collapsed on the seawall. I thought I’d had a seizure due to C-PTSD. The doctors at St. Paul’s thought I may have had my seizure due to lack of oxygen in my brain because I have arrhythmia. Now it’s January and I’m called into St. Paul’s and told I could have Parkinson’s.

I’ve been a wreck for two days. My little orange pills have held me together. And my distress has nothing to do with a fear of having Parkinson’s. What I am sick of is living with uncertainty.

I want to stop going to doctors (except Dr. Shoja) and get on with my life. I had almost reached that point this month after my consultation with Columbia Speech and Language Services. With them, we concluded speech therapy would not likely be beneficial for me but that my ongoing work with Dr. Shoja might lead to some improvement in my speech.

I was about to embark on my new life with C-PTSD. The seizures were over, I never needed my medications and I had made peace with my stutter. Besides—my stutter could virtually disappear with friends. Life seemed good again.

I might soon be back to that approach to life. But there might be more sub-plots coming to the story of my life.

The heart subplot began Sept. 4^th. On Monday I see Dr. Pimstone who will likely end five months of uncertainty about my heart. He will say we’re not concerned about your arrhythmia, we want you to take these drugs or we want to put in a pacemaker. 

Now I must be patient as we resolve the Parkinson’s subplot. I must be prepared for it to take as long. I am adjusted to that now. But you see it’s this uncertainty that drives me crazy. I am not afraid of C-PTSD or Parkinson’s.

Bottom line: If my shaking and stuttering are due to C-PTSD they may get better (hope). If they are due to Parkinson’s, they won’t (acceptance). Either way it’s an end to uncertainty—and not just for me, for my friends as well.

Renewed

Over the past two days I exhausted myself with anxiety about maybe having Parkinson’s so last night I went to bed at 8:00 PM. And now its 4:30 AM Friday morning and I’ve awakened feeling like a new man. Can I talk again? No. Can I move my head and arms without shaking? No? But I feel great.

You should see my home. It’s usually very clean and tidy but not any more. It’s chaos and I don’t care. But today I will tidy and clean up—that’s how good I feel again.

I’m back to certainty I don’t have Parkinson’s. But I am anticipating getting a pacemaker. Because they’ve called me in early, I think they’re going to put in a pacemaker.

I hugely admire Dr. Montaner, my HIV doctor. He is the head of the UN’s International AIDS Treatment Strategy. He’s one of the inventors of the AIDS cocktail and I suspect he wants to know with certainty why I am stuttering and have motor control issues. If my drugs are causing this, he would definitely want to know that.

Dr. Montaner was really freaked out by symptoms I’ve attributed to C-PTSD. He said he’d be talking to Dr. Shoja and Dr. Pimstone and I wouldn’t be at all surprised if he would want Dr. Pimstone to put in the pacemaker to rule out arrhythmia as the cause of my issues. He said I’d be seeing a neurologist but Dr. Shoja could cause him to change his mind by telling him my symptoms are consistent with C-PTSD. 

All the uncertainty and new conjecture threw me. But it’s remarkable, a little time past and a fabulous night’s sleep and I feel like a far happier man.

I bought some tickets. J'ai eu un ticket pour voir Cuisine et Confessions ce samedi. C'est par Théatre la Seizième. Il a eu des critiques extraordinaires. And in March I am going to see Paradise by Dairakudakan Dance Company. It looks incredible. It’s a butoh/theatre mash up created by Japan’s foremost avant garde troupes.

I feel giddy— happy and light; perhaps a rebounding high from the low of the past two days. Regardless, I feel back to my old self.

Today my mission is the party shop. I’ve had a great idea for a dress: The gambler’s widow dress. If I do it, it will be made of playing cards, dice and poker chips. And to find marbles.

Trumptoons of the Week

Wednesday Was Hellish Till I Took a Pill

I took my strongest calming drug Wednesday morning because I awoke feeling like staying in bed and cancelling everything. My day went like this: What time is it? I wonder if I have Parkinson’s? I wonder where Leon is? What’ll I do if I have Parkinson’s? “Want something to eat, Leon?” Will I be able to do this when I get worse Parkinson’s? Water? What if I do have Parkinson’s? Etc. Etc. Even though I doubt altogether that I have it.

So I took the pill and it worked. I had a FABULOUS and elegant lunch at le Crocodile with Edwin. It’s easily the best place for lunch downtown.

On Tuesday, Dr. Montaner said: “There’s clearly a problem in your central nervous system. If there’s reduced blood flow, let’s fix that. And lets have a neurologist check you out—not just for Parkinson’s but for any reason your speech may be affected. And we’ll hear what Dr. Shoja has to say about your speech and then, once we try everything they suggest, if you still have the problem we’ll change you meds for three months and carefully monitor you.”

Yesterday Dr. Pimstone, my cardiologist, called. He’s having me come in on Monday—I suspect that this is due to a call to him from Dr. Guilemmi. I guess I will find out if I am to get a pacemaker or not. I don’t, as yet, have an appointment with a neurologist.

Dr. Montaner is clearly committed to finding out the cause of my speech. He is the head of AIDS treatment both at St. Paul’s and a treatment advisor worldwide. He is an AIDS “star” at the UN. He’s a world leader in treatment and so he wants to know if my speech is due to my chemical therapy. As Dwight said: I am his bitch Guinea pig now.

Today I am over the shock and feeling completely back to PTSD/stuttering normal.

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Am I over reacting? Yes. That’s what you do when you have C-PTSD. Is it irrational? No. Dr. D. (whose name escapes me) had me do two things: First: Extend my arms straight out in front of me at shoulder height, palms down. No problem. Then, keeping them straight, I was simply to turn my palms up. It was a disaster. My arms flew all over the place. I could not do it.

My second task was to turn my head to the right. Well, I can do it but it’s not easy and I shook like mad.  Then he asked me to turn my head to the right and it was like I had palsy. Later I was able to do both tasks; the capacity comes and goes.

I’ll say it again: it’s like there’s a loose screw. These physical symptoms come and go like my speech and so I’m practically positive I don’t have Parkinson’s, but there’s clearly more going on than just speech. Call me Enigma—Mr. Enigma, if you please.

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It’s hard to work on my script when my mind keeps skipping to the question of Parkinson’s or not, so I am working up more dress ideas.

I’ve got the materials with which to make the baseballs. And the Ping-Pong balls are on their way. The current challenge is marbles; toy stores don’t carry many. I saw bags of ten for $8 that seems crazy, so I’ve some Amazon research to do and more stores around town to visit. (I’m wondering if the swallowing hazard has brought an end to them. They were such a huge and happy part of my childhood.)

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I remember my first crushing celebrity death. It was Gilda Radner and I was just gutted. Princess Diana was number two. I was very sad today about the death of Mary Tyler Moore. I was just smitten with her and her cast of characters in her show. There was a goofy megalomaniac Ted who was so incredibly funny I could barely watch him. And Betty White as the sexual predator secretary was comic genius. We lost a classy lady.