Friday, December 3, 2021

FND is Like Parkinson's

Our morning walk was wonderful because it was so, so bright out, and, as usual, the forest fragrances thrill me. At one point during our walk, the forest smelled like fresh pencil shavings. Later, it smelled of Cinnamon. 

Everyone around me is getting their Covid booster shot, so I called the provincial Covid help line to ensure I was registered to get one, and I am. I will not get mine until January it seems, and that’s fine with me.

I loved Zooming with my new friends from the U.K. We chat for an hour and a half, and the time just flies by. It was terrific to see everyone.

I gush about our group, I gush about England and English actors; they know that I’m a passionate Anglophile. They know why I like England, too—not all my reasons, but many. I’m well received. Yesterday, they asked me to prepare some photos of Gabriola and my home so that they can see them during our next session.

Once the Zoom chat was done, I set immediately to baking some Carrot muffins. My mix made twenty-two smallish muffins that I’ll take to share with my fellow dog walkers today and the rest I hope will disappear with Jay, Fran├žois and Eoin tomorrow night. They don’t know it yet, but they are leaving with any uneaten ones; I’m fully committed to my new dietary regime.

After that, and because it was sunny, Her Highness and I went on a lovely long afternoon walk. It was as fragrant as when walking in the morning. Once back, I made the cream cheese dressing to pipe onto the muffins, and then iced the muffins. My icing was a disappointment. I added the icing sugar all at one and should have done it in bits.


I got the last piece of my new wardrobe ordered. The image above is of a t-shirt, but that is the pattern of my incoming hoodie.

This desire to be more interesting in my dressing is a welcome good sign. I’ve felt rather flat since developing FND. I lost my desire to do longform writing, build paper dresses and to draw. My passion gene seemed dead.

I ordered art supplies, but I keep reading. I mean come on. Nothing can trump sitting on the chaise, by the window, with the fire lit and with snacks on the sill.

I was passionate about the things I did as a producer, writer, thespian—with everything. I loved life and I loved living it in a state of constant excitement. I’d hear many friends talk about their struggles with discipline on their projects. I was never that person. I only needed discipline to stop. When I built the theatre for North Vancouver, I sometimes slept overnight rather than driving all the way home, just to sleep, and then drive back again. But that was then.

We are four regulars, in out adult-onset stuttering Zooms; we meet with Tracy and Helen, our moderators, who are wonderful. I love them. The of the four of us who stutter, have FND. Our group is as much about FND as it is about speech—I would say that yesterday, we talked about FND for 65% of our time together.

We’ve all experienced disbelievers—people who think we are consciously manifesting (faking) our symptoms. People like the anaesthesiologist who was caring for me after my heart attack. We’re all stimulant adverse, I discovered today. We’re all feeling flat. I think I’ll propose that we think of ourselves as zombies.

None of us had heard of FND before we got diagnosed. None of us have met anyone who knows anything at all about FND … or lives with it. What shocked me today was to hear this from Tracy: medical scientists in the UK are seeing FND as very similar to Parkinson’s. They are both neurological conditions. The only person in our group who does not have FND, is John. I just love the guy. He has Parkinson’s.

It feels amazing to Zoom with them. I cannot tell you enough about the power and glory of my support groups. 

All four of us are ‘praise the lord’ glad that we’ve passed the initial phase of living with FND, when you are required to explain our behavioural changes to friends. None of us knew what to say. 

One thing I liked that came out of me, was this: “We, and our friends, needed a short pithy and enlightening bundle of words, to explain what happened to us. Saying we have FND doesn’t say anything to them. Just as when we ask friends what a movie or a book is about, we want a short pithy and enlightening/alluring answer. 

Now we have one: FND is a neurological disorder like Parkinson’s Disease. It’s an excellent answer, but as John says: “My friends are always satisfied when I tell them it’s because of Parkinson’s that I shake and am disfluent, but they don’t know anything about the condition.”

I had quite a fabulous Zoom today!

The muffins are delicious! I ate half of one.

 

The evening was wonderful. Every evening is wonderful now that I’m a subscriber to Acorn TV. There is so much to watch; I’ll try almost everything on the service because … well … everything is British and for me, that’s like saying everything is great. I’m so happy at night when I’ve something good to watch.

I tend not to read at night, and I avoid television during the days. I just love my relaxing evenings with my pets and the fire. The cats love to cozy up to me at night, whereas during the day, they tend to be rather aloof. 







Birdwing Butterfly

Amethyst Mushroom








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