PATIENT NEWS - Drew Smith ¦ Tracy Ghoris ¦ Manon Sauvigeau ¦ Susan Hills ¦ Bob Metzger ¦ Alex Irvine


1. Drew Smith, US


Drew Smith has sent us these words about his living in lockdown:


I listen to podcasts. Go for walks and ride my bike, and organize. I have organized my DVD collection and CDs, photos and videos. And I write poetry and watch TV (a lot of Netflix). I recommend these shows:

How to fix a drug scandal. Unnatural Selection; The Pharmacist; Tiger King.

Just been hanging. I play Rummikub online. Do you know how to play Rummikub?


If you are an optimist,
watch The Pharmacist.


If COVID coverage is too much to handle,
watch How to Fix a Drug Scandal.


If you want a new perception,
watch Unnatural Selection!

Before everything had shut down I was attending a fitness class at a neuro wellness program. I was going twice a week and boxing once a week. I also was bowling with friends and family.


Last April I started private sessions with a Rock Steady certified boxer 1-2 times a week. It is not an actual Rock Steady program but my instructor is aware of my condition and the goal is to improve strength and balance.

I also started an adaptive exercise class in a wellness program for people with brain injury/neurological conditions through Supportive Living Inc. They offer many different classes. I participate in a 1-hour group gym program 2 times a week with 1:1 training. It has been very helpful and I really like it. The video I sent you was with a trainer.



2. Tracy Ghoris


We've had quite a few nice spring days here in Ohio, and I took advantage of some of them by gingerly walking with my cane outside our house and enjoying nature. Viewing the rolling green hills, budding trees, blooming flowers, mooing cows, chirping birds, pretty butterflies, and many bees (with my being careful not to get stung!) has been refreshing and peaceful for me during our coronavirus stay-at-home orders. I even saw three wild turkeys, and the plumper one spread its colorful feathers--what a neat sight! Wouldn't you know it; I didn't have my camera with me then! I've always enjoyed nature, and it's always helped me deal with many things including my Neuroacanthocytosis.


My April Botox injections were postponed because my neurologist didn't want to take the chance of exposing patients to COVID-19. I'll now have Botox in June. At least I hope so because it's now wearing off and my spasms are becoming pronounced and somewhat painful. However, walking about and relaxing in nature will help me to some degree until my June injections.


I enjoyed reading the NA Patient Letter. Hope the Barcelona Symposium will be held in 2021!



3. Manon Sauvignon, Canada 


Alex Irvine tells us about a patient in Canada:


I have been exchanging emails with Manon Sauvageu for the last six or so months -- and here are some of the things she has shared with me. She is very proud of herself for being able to walk without too much assistance; in fact, recently with no assistance at all. She puts that down to exercise, exercise and more exercise, walking along the corridors and in the basement of the home where she is staying. Her favorite pastimes include playing dominoes and doing word games with people in the Cooke residence where she currently lives in Montreal. As well as reading she likes to go swimming in the pool nearby (unfortunately this is something she cannot do at the moment because of the current pandemic and she really misses it.)


"I have my little life routine and I would not change anything for all the gold in world," Manon writes. "On this positive note I salute you and wish you well. You can me write anytime."



4. Susan Hills, England


Susan Hills in northern England brought us up to date with her life under lockdown:


We have done a cat jigsaw not long ago, good fun. I have not done much scrapbooking yet but like like doing crafts; it is something to do. Here’s a jigsaw I did a while ago plus one of my paintings and my cat Mimi!



5. Bob Metzger, Minnesota


We hear from Bob Metzger in Minnesota:

Part of my "managing life during this time" has been getting out for long hikes in woods on weekends.



6. Alex Irvine, London


In London Alex Irvine has been busy with jigsaws and computer cards plus she completed a special project:


The antique box came with 24 pages of instructions -- fortunately with excellent photos. We stopped counting the number of pieces to be slotted together. Now she’ll need some trinkets to put in the myriad drawers! She sends best wishes to all and hopes you are finding enjoyable things to pass the time. She will be delighted when she can return to the movie theatre. Her cat CoCo still sleeps at the end of her bed for most of the days and nights.



A selection of photos and artworks sent into Patient News...


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Drew Smith and friends go bowling.
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