Since I was diagnosed with Essential Tremor (ET. I have focused on good health, a solid positive mental attitude, remedies for my shaking hands and a way to connect to organizations and study groups that report out and support people with Essential Tremor. I was putting one foot in front of the other and thinking I was doing my best.
My blog: http://Awomanandherstories.com Living with Essential Tremors, was built on my personal story of realities and fervent hope with others. I post pictures to reflect my journey, many of them exercise related. Each month I post on exercise photo of what works for me. While exercise is not yet proven through research to diminish the tremors; it does give me the strength my body needs to stay mobile, agile and confident. There is research that indicates exercise is excellent in helping people with Parkinsons so I watch for research on ET that makes the same connection. I feel confident it is just a matter of time.
Being in touch with others who suffer with ET is so important, so I reached out to the three Florida ET Support Group Coordinators and marveled at the “good work” they were doing to help others. There was not a group within 4 – 5 hours of driving time so I contacted the International Essential Tremors Foundation ( https://essentialtremor.org/) to see if I could start a Sun City Center, FL Support Group. I passed the credentialing and founded the Sun City Center, Florida ET Support Group in January 2023.
Whew, it took a lot to get started and create excitement, but through the support of our two local newspapers, the News of Sun City Center and South County and The Observer News, the word is out!
Our first support group meeting was in February 2023 with 22 RSVP’s. Registration and sign in was amazing when 72 people showed up! We held our second meeting on March 21, 2023 with 69 in attendance. I’d say that we have great potential to help many others. In fact, many of our guests have other tremors with limited resources so at this time, we serve a varied group of people.
At our recent meeting, I asked for a show of hands for people who have been formally diagnosed with ET. Less than 1/3 of the hands went up. I took a bold stance and said “If you don’t really know what you have, how can you expect long term treatment success?” ET mimics other ailments, one of which is Parkinsons. You don’t want to guess!
As I looked out into the faces of our support group, I saw myself in different stages. Some are new to ET and not yet connecting to the fact that it won’t leave them… it is a long term illness. It ages with us. There are different stages of the tremors: slight, moderate and full blown. I have progressed to the moderate stage. I miss the slight tremors because they weren’t visible. My moderate can be seen at just about any angle. I wonder how much time before I am to the full blown tremor stage.
When I hold an item up and away from my body, it’s like the wind has picked up by several knots! It’s like a flag waving or a flower being blown about by the wind. I now tell people I have ET when I get up in front of a group to speak. It’s much easier than having so many eyebrows go up in bewilderment. I use my humor to announce the shaking… “No, I’m not cold, so don’t jump up to adjust the heat.” Or don’t worry, I am not afraid of any of you so let’s join in and do this together.” Humor helps both of us. Teamwork does impact progress and I can go on!
My walking gait has changed – my muscles are weaker than they were before.- My strength in lifting weights has changed making it necessary for me to lower my weights. I have a harder time getting up after a push up or crunches. I don’t get off my bicycle as quickly so I don’t topple over. It is highly possible that some of this is age related (I passed my 40th birthday 3 decades ago!) but as likely that it comes from fatigue as a side effect from some medicines and ET. I don’t give up.
I have increased my exercise repetitions to make up for the weight drop. I hold my bike handles in lock form when I get off the bicycle. I increase the number of my crunches and pushups so that when I do get up, I’m done! No matter what we suffer from, we have to modify, but don’t quit.
In our support group, many have told me that they don’t work out, other than a small walk every day. A small walk a day is great. Adding light weights is a step up because your muscles are challenged. Many of us don’t think we can do a crunch, but I think it is more about how we see ourselves than actually trying 3 – 5 crunches a few times a day. I know how important my leg and abdominal movements are every time I start to stumble. I don’t go down and I attribute that to my core strength!
Insert photo with exercises
I also eat healthy. What does that really mean? It means, no caffeinated drinks. Little salt and sugar. Vegetables. Fresh fruits. Lots of water. In my case, I drink 1 -2 BAI drinks a day… diluted with water as the day goes on. More chicken and fish than beef, but we do have one great piece of beef a week. Saturday night steak and dessert night is really something to look forward to for sure!
I manage my weight so that my mobility is more positive. I do all I can to control my blood pressure and cholesterol. Anything I can do to contribute to good health is a part of my game plan. I am learning that when ET sufferers say that exercise can’t make a difference, it’s because they have given up or don’t see themselves as fitness experts. We don’t have to be an expert, we just have to do something.
I hear things like “well, you look great, so it must be easy for you.” Nope. I have to work at it every day. I have a game plan that includes washing and styling my hair when I get up (not tough to do when your hair is as short as mine is) I put on makeup… I wear matching workout clothes so that the stage is set for progress. What is wrong with looking nice while you tackle the ET demon? I’m focusing on me. I don’t worry about what others say. I can’t win if I do and trust me, If there is anything I can work toward, it is living with ET with style and grace.
So my journey continues. I have ET, I am leading an ET support group to help others, my blog Awomanandherstories.com, Living with Essential Tremors, is drawing new readers, so progress is being met.
So if you can pick up on a few good ideas, I am complete. You will be more complete when you take steps to connect, read, research, work out, add healthier food to your diet, get a Motion Disorder Specialist (Neurologist) on your team, be a part of a support group, support International Essential Tremor Foundation (https://essentialtremor.org/) so that you can receive their excellent material, consider a clinical trial, communicate your situation with family, friends, colleagues, etc. – Be a beacon for living well with Essential Tremors.
My next blog post will have 2 new pages.
1. I will break out exercises on a separate page so you can find them easier.
2. My Facebook page is being updated so focus on ET not just my general circle of life
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