Betty Blog 

I have just spent a month with the new Steadi-Two glove and I am delighted.  It is light, very effective, easy to put on and take off and I could wear it for hours with no problem.  The only downside is that I have to send it back to Steadiwear so they can make any changes they plan for the final product.  I did have a couple of minor suggestions because I have a small hand so needed to adjust the fit.  It was an easy adjustment to make once I talked to their tech expert.  I did not want to do anything that would change the way the glove mechanism worked.

During the month I wore the glove for at least four or five hours a day while I did my usual things.  I spend about 3 hours on my iPad checking e-mails, and various other sites that I watch every day.  I also played computer games for hours while we watch TV and I am now able to do jigsaw puzzles again.  Covid has been widely spread here  a good part of the last 19 months so I am largely housebound.  The frustration I was feeling with my tremors was some of the worst I have ever experienced.  As many of you know, depression often accompanies those feelings so you are not just dealing with tremors, you are also trying to keep your spirits up.

Steadiwear also asked me to let a video crew come in to video my life with and without the glove.  I surprised myself by saying yes!  It was a good experience.  I really believe we need to share our knowledge of essential tremors as so many struggle with it but don’t have knowledge or support.  When I first found out what I had, I had no support and knew no one with ET other than my sister whose ET was mild and controlled by her beta blocker.  So, I googled “essential tremors “.  One of the first sites that came up was the International Essential Tremor Foundation.  It is a goldmine.  It was there that I learned about the physiology, possible treatments, assistive devices, coping skills and research that is going on all over the world.  It also provides information on support groups all over the world.  IETF made me feel that I was not alone and gave me hope.  There are no support groups in Alberta and only one doctor in southern Alberta who is working on ET but I found that out on the IETF site.  I enjoy their Tremorgram newsletter that keeps you up to date on new developments.  You don’t have to pay for any of it.  It was also at IETF where I learned about Steadiwear.

One article I read at IETF recently that I found helpful was called Living with Liquids.  I am having more trouble carrying food and drinks.  It explained how to carry hot soup, tea cups, coffee cups and wine glasses. The writer is an engineer who has ET.  She understands the behavior of fluids and explains how the fluids you are carrying will act.  I would never have thought of carrying a glass the way she suggests (by the top rim).  

The new glove is nice because I don’t have to ask my husband to carry drinks for me when I have it on..  Small successes but really nice!  They all count!

I am having more trouble getting food from my plate to my mouth.  As we are not going to restaurants, I have not been eating in public but I am apprehensive.  I bought a bib to save my clothes and bought the weighted cutlery (which didn’t help).  I didn’t use my new Steadi-Two for eating because I was afraid of getting it dirty.  I hadn’t read everything or would have known that the fabric part of the glove is washable!  I decided to eat with the glove on for a couple of days and was really happy that I did.  I did not wear my dinner (for a change) and was able to carry my dishes and cutlery to the dishwasher without dropping anything (a first in many weeks).  So one more hooray for Steadi-Two!

I am struggling a bit with my self-esteem as my tremors are getting worse.  I am waiting for an appointment at the movement disorder clinic at the university hospital.  I hope they can find a medication that will give me some relief.  I am on Topamax but don’t think it does much.  I can’t take a beta blocker as I have asthma and that is all I know.  The wait will be long but hope there is something else.  It has been 15 years since I was assessed so I have hope.

Well, my life is looking up right now.  I hope yours is too.  I will keep sharing what I learn and I hope to keep learning.  The ET world is developing new creative ideas all the time.

Betty

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