Several months before I had the DBS surgery I joined a Facebook group for Essential Tremors. While at the start I didn’t say anything on there or talk to anyone specific, but read a lot of posts that helped me answer some questions and it is nice to see that you aren’t alone in this disease. There are a lot of people who don’t understand Essential Tremors so what best person to have on your side, but someone who also has been diagnosed with it. Now this dosen’t end with just Essential Tremors. You can find a group for just about anything you need. This group was another way for me to make the decision on which stimulator system I wanted to go with. Now when I say that I didn’t ask anyone’s opinion. I just quietly read ALOT of posts on the page that helped lead me two different ways. Then also read a lot on the internet about all the companies leaning towards either Boston Scientific or Abbott. The third company is Medtronic’s which was the first to have the system.
One thing I find helpful in these Facebook groups is these people are struggling with the same things that are hard to do and the person who doesn’t shake aren’t and may not be able to sympathize with you. For example the simplicity of placing toothpaste on your tooth brush. Shake and try to do it and you may end up with toothpaste in the sink, on you, or on the counter, or even all three. It gets old when it has happened every day for 20 something years. We as a group can rant to each other and the other person understands.
A second reason I like these groups is that you may have found something that works for you that others may want to try. Hints on how to put make up on when you are shaky for example. Or medication that one has tried that helps some, but the other person hasn’t tried it yet. Now of course for that one they’d have to talk to there doctor first, but we are our best advocate and if anyone has help it’s worth trying it for ourselves.
I also belong to another group where people who have either had DBS, are thinking about it, have a family member or friend who has had one placed or maybe they just to know about DBS in general. They do monthly zoom meetings. It is not run by professionals. It’s just us coming together to discuss our situations, and success, or failures and possibly help answer non medical questions for those looking into it. I joined the meeting for the first time this month. It was fun meeting those with the same diagnosis as you as we are all in different stages of getting the stimulator it’s fun to just meet and learn. Just because I already have the device doesn’t mean I am healed and don’t have my problems or questions. Those who have been following this blog from the beginning know that I recently have been diagnosed with anxiety disorder and so that is fighting against the stimulator. So that’s just an example of one thing that I wanted to see if anyone else deals with this. I just started a new medication for this so stay tuned as next weeks blog will be about this.
In closure I just want to say again how important these groups are. If you have essential tremors and are reading this or know someone whom these groups may help please have them reach out to me by email and I will let them know what the groups are called. Please share my blog with friends who may know someone with Essential tremors. Thank you all for reading.
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