posted
My dad took my dh aside today to suggest I go to Mayo to see what they could do for my tremor. My sister called me to say the same thing.
FIRST of all, I am seeing a doctor that is trying various treatments. Second, we know what is wrong (ET with some Parkinson traits). Third, it bothers everyone else more than it does me. Sometimes there are things in life that we just live with, for now, I see if something works if not I live with it. But I refuse to spend a lot of money we do not have, to be told what I already know.
posted
They're ganging up on you because they care about you? :-)
I can't remember - how have you done with meds? And what is your tremor - arm, head/neck, or what?
My mom is encouraging me to go for DBS, to not wait and stick it out for a while longer (as I had thought at one point). That kind of thing gets more difficult as you get older, you know. Maybe your family is thinking of things like that?
Mayo has a good reputation, you know. They might be able to help you, especially if you have atypical ET.
Posts: 93 | From: Western Washington | Registered: Aug 2009
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posted
I tried Primidrone and it reduced tremors by 50% or so but I developed an allergy to it and had to stop taking it. I started 5htp & BCAA, they have helped my over all wellbeing and internal tremors are gone, but hand and leg tremors are still present. 5 weeks ago I started propranolol and am up to 20 mg in the morning & 30 at night. next week I go to 30 both times. The tremors are perhaps 20% reduced. I am not ready for dbs.
I have pinched nerves in my neck causing trouble on my left side (weakness, loss of sensation, cramping, lack of un-conscience function- meaning I can use my left arm & leg, but have to tell them what to do). The night I fell (4 years ago) that side went numb and has never recovered (damage per MRI was at C2 & C4-C6). I am currently working with a chiropractor to correct the alignment in my neck. It is helping! That side of my body is beginning to feel alive again. Thursday, for the first time in four years I woke up, got up & realized that I hadn't had to tell my left side each step in the process. Today I shut the van door & my hand didn't stay put until I told it to move. The nerves are beginning to work again.
Yes, my family cares & is worried, but they also aren't listening to what we are telling them either.
Posts: 172 | From: SD | Registered: Aug 2005
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posted
I haven't told my father about my ET either and with any luck I won't have to. I'll tell him if he notices my tremors and asks. I know that he would just make a HUGE issue out of it which I don't want and make it out to be worse than it really is.
Posts: 12 | From: Australia | Registered: Oct 2009
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My wife is constantly worried that I'll drop things. I keep trying to tell here that the ET has nothing to do with hand strength, but she seems to not understand that...
-------------------- ET caused or exacerbated by brainstem cavernous angiomas Posts: 14 | From: France | Registered: Oct 2009
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posted
Kirk, it's not always strength that counts in my opinion. In the case of ET, it's also the inability, at times, to judge the precise amount of pressure required to grip an object securely.
For example, I find it easy to hold a glass or cup, as long as it's made of rigid material, and as long as it's empty. Fill it with liquid, and I may spill it. Substitute a paper, thin foam or flexible plastic cup, and I'm courting disaster. At least, that's the way I was prior to DBS. Nowadays, I'm still somewhat hesitant about tempting fate, although I think I'd probably do a bit better.
It seems to me it's not so much a lack of hand strength, but a clear perception of how much pressure my fingers are exerting at any given instant.
Additionally, steadiness enters the picture. It was relatively easy for me to carry an empty plate from point A to point B. However, load it with food, and danger ensued. I wasn't too reliable at a buffet. I learned that the hard way. Posts: 817 | From: Gravenhurst, Ontario | Registered: Sep 2005
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posted
Hugh, I guess my tremor hasn't gotten to that stage yet. Though I admit that I don't do styrofoam cups, and I haven't been to a buffet - especially one with paper plates - in quite a long time. I have knocked over glasses, however, and tend to not want to use glasses with stems any more for that reason.
-------------------- ET caused or exacerbated by brainstem cavernous angiomas Posts: 14 | From: France | Registered: Oct 2009
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posted
I have discovered that I do better with writing, eating, etc if I hold the utensil very loosely. My arm doesn't bounce as much. Of course, that means that I'm more likely to drop what I'm eating...
I don't do certain foods, especially in public. Soups, spaghetti, peas. Finger foods are better.
I am fortunate that ET runs in both my family and in my dh's family. It isn't terribly widespread, but everyone is familiar with it and with how it "works". So when we get together for holiday events, etc., it's an easy environment for me.
Posts: 93 | From: Western Washington | Registered: Aug 2009
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You mentioned that you do better with writing and eating if you don't hold the utensil tightly. I have been trying a new pen, called the PenAgain. It is ergonomically designed. It kind of looks like a wrench. It has two arms that wrap around the index finger. The pen has indentation for the index finger to rest in. Their are flat areas on the bottom sides of the pen (which are angled) for the thumb and middle finger to support the pen. I have found that I do not have to hold this pen tight at all. I am training myself to use my entire arm instead of just the wrist for the writing motion. Between the pen and change in writing habit, I have found the tremor while writing has virtually disppeared.
The pen cost me about $4.00 and I spent another $2.00 on refills. I bought this pen at Office Depot, but I understand you can find it at other office supply stores, and at some Wal-Marts. You can also see them online at penagain.com.
Posts: 30 | From: Utah | Registered: Apr 2009
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Thanks. Yeah, I've tried different pens, but found that having the correct pen with me when I need to write something - it's usually easier to manipulate someone else into doing my writing for me!
On the DBS yahoo group there was some discussion of adaptive devices - eating utensils, special plates, pens, etc. There are sources for those devices online that look fairly reliable. That's a good option for some, but I guess I'd find it a serious bother if I had to tote along my special silverware, etc to every potluck, dinner away from home, etc.
Posts: 93 | From: Western Washington | Registered: Aug 2009
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Gabby, I am with you. There is NO WAY I would bring my one special silverware to every meal away from home. What I am doing with the pen is leaving one in each place I might need it. One in each car, one (and my refills) in my desk at work, and one in my desk at home. I have found that to be working pretty well.
Mom of 5 - I would be going nuts if my family was telling me how to handle this to. Just know they are concerned because they love you.
Posts: 30 | From: Utah | Registered: Apr 2009
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Doug, I will have to try that pen. I have read that thick pens are good but I haven't found it to be so. For that matter, my writing has not gotten large and shaky (as opposed to small and cramped with Parkinson's). In fact the real problem for me is that it is just difficult and unpleasant to write, and I have to slow down and put a lot of conscious effort into it. Also, I never know how difficult it is going to be, so that before I write I am worrying about it, much moreso in public. It is very easy for me to get obsessed with the writing difficulty, which leads to constantly testing how bad it is. On the other hand I can write on a whiteboard without much trouble at all, as the arm is mostly involved and not the wrist. I seem to accept the difficulty of eating and drinking with shaking silverware and glasses much more readily, I guess I view those things as less threatening. The psychological as well as the physical impact of ET is really a lot to deal with.
Posts: 4 | From: indiana | Registered: Apr 2009
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![[Smile]](smile.gif)
Today I shut the van door & my hand didn't stay put until I told it to move. The nerves are beginning to work again. ![[Wink]](wink.gif)
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