Small Comfort


Posted by Barbara Hanratty , Aug 24,2001,04:37   Archive
I've had BEB since January. Last month I began to have some pain in my neck, which I'm hoping is caused by tension rather than a progression of
Dystonia. I guess I'll find out when I visit my neurologist in Oct.
At any rate, I've found something that helps me - an aromatherapy wrap that you put in the microwave for 3 min to warm up, and then cuddle in for about 30 minutes. Muscle stiffness is relieved! I also use a chilled gel mask on my eyes at the same time.
I found the wrap in "Soft Surroundings" catalog for $36.00, but you probably could find it somewhere else cheaper.

Small comforts are good!

Barbara H in NY, just back from BEBRF conference, where I was inspired to post.


Related link: http://www.softsurroundings.com




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Re: Small Comfort

Re : Small Comfort --- Barbara Hanratty
Posted by kathy , Aug 24,2001,09:41 Top of Thread Archive
barbara, thanks for the tip. i also have alot of tension in my neck.
that catalogue is really a good one, i think. they pay alot of attention to things that would appeal to we women . of course i also love anything soft.

--modified by kathy at Fri, Aug 24, 2001, 09:42:47




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Re: Small Comfort

Re : Small Comfort --- Barbara Hanratty
Posted by Kelly Saffell , Aug 24,2001,10:57 Top of Thread Archive
Thanks for the tip - I'm glad you were inspired to post! I have alot of stiffness in my neck. I just returned from a muscular therapist whom I see regularly at $85/hr. If I can alieviate some of my pain in other ways that would sure help my pocketbook! I have never seen the catalog but I'll get online today and order.



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Re: Small Comfort/You can make a generic one yourself

Re : Re: Small Comfort --- Kelly Saffell
Posted by Sally - in - Idaho , Aug 24,2001,16:13 Top of Thread Archive
Hi ...

You can make a very simple "generic" one yourself by taking a long tube sock, filling it with rice, and stitching the end closed. It can then be heated in the microwave as often as needed. Just don't get it too hot. (Some people like to fill them with wheat instead, saying it smells like fresh bread baking then. One lady sells them that way, and others sell the rice ones.)

Just a thought that you might try out until your softer aroma one arrives.

Sally in North Idaho




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Re: Small Comfort/You can make a generic one yourself

Re : Re: Small Comfort/You can make a generic one yourself --- Sally - in - Idaho
Posted by June in Toronto (June Floyd,June in Toronto), Aug 25,2001,10:03 Top of Thread Archive
Welcome to Barbara and Kerry - nice to have you on the bb.

That was a good idea Sally. Stores sell wheat pillows saying they conform better to the head, neck, etc. There might be something in that! People should be careful with aroma - I was given a lavender eye mask once (I love lavender and the thought was very nice) BUT the strong odour so near the nose almost knocked me out - it was so strong and powerful. The eye mask now sits in the linen closet!

June in Toronto

--modified by June in Toronto at Sat, Aug 25, 2001, 10:06:02

--modified by June in Toronto at Sat, Aug 25, 2001, 10:09:27




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Re: Small Comfort/You can make a generic one yourself

Re : Re: Small Comfort/You can make a generic one yourself --- Sally - in - Idaho
Posted by kathy , Aug 25,2001,16:32 Top of Thread Archive
gosh Sally, where did you learn that? necessity is the mother of invention? very clever.



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Re: Small Comfort

Re : Small Comfort --- Barbara Hanratty
Posted by kerry horton , Aug 24,2001,14:25 Top of Thread Archive
This is a little note to my Mom, Barbara.
You go girl!!!! Look at you posting and
a link, too!!! Wow!
You always make everyone you touch feel
better. Now you can share that with so
many others. You rule!
:) Ker, whose Mom is probably a little mortified that I wrote this, but knows I love her anyway.



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Re: Welcome

Re : Small Comfort --- Barbara Hanratty
Posted by Shirley-Arkansas-USA , Aug 24,2001,22:12 Top of Thread Archive
Hi Barbara,
I'm glad that you were inspired to post. I think that all of us bulletin board people were there on a mission and one part of that was to try to let people know how much support we receive from this forum.
Did I meet you? I was the one that invited myself up to the podium on Sunday. Actually I asked Mary Lou Thompson on Saturday if I could say something about the bb and she said that I could on Sunday with the last panel. I'm not a good speaker but this bb has done so much for me that I want everyone to know about it and what super people there are here. I'm glad that you have "arrived". We're here every day.
Welcome aboard.
Seems that you have a daughter that loves you very much. How much better could it get?

Shirley in AR.




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Re: Welcome

Re : Re: Welcome --- Shirley-Arkansas-USA
Posted by Barbara Hanratty , Aug 26,2001,20:28 Top of Thread Archive
Hi Shirley,
Thanks for the welcome. We didn't meet at the conference, but I did get to hear you speak on the panel. What a great job you did! Thanks for that, and for all you do for so many on this bb.
I need to apologize for not responding to your original welcome back in June. I asked if anyone ever got well, and you gave me the straight scoop. Unfortunatley, I don't think I was ready to hear it. Maybe I'm still not, but I'm trying.
Had my second Botox shots last Monday - no results yet. The first set was eight weeks ago and gave me one day of blissful relief. I'm hoping for a little more this time!

My daughter Kerry has been with me every step of the way. You're right -
nothing could be better.

Barb in NY




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Re: Not ready fo hear

Re : Re: Welcome --- Barbara Hanratty
Posted by Shirley-Arkansas-USA , Aug 27,2001,19:06 Top of Thread Archive
Hi Barbara,
Thanks for the compliment regarding my little speech. I'm not good at things like that but sometimes one has to be brave and just do it and hope that you don't mess up too badly.
No need to apologize for not responding. You, certainly aren't the only one that didn't want to hear what I had to say. I've always needed people to tell me exactly what is going on and what I can expect so that I can deal with it and start a plan of some sort.
I try to be kind about it but there isn't much of a nice way to tell someone that no, this usually doesn't go away. It has for some people, but they continue to be in the low percentages. That doesn't mean that there is nothing that you can do to help things. I'm glad that you were able to go to the conference and see others dealing with this and hear first hand what the doctors have to say about it. That in itself has been very helpful to me.
Arm yourself with knowledge and accept the support of your daughter. My two sons support and my husband's is so very important. They help me get through this along with this bb.

You're going to be fine, Barbara. You are doing all the right things. It isn't going to be easy, but you can deal with this. We'll help you whenever we can.

Shirley in AR.




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Re: Not ready fo hear/ Shirley

Re : Re: Not ready fo hear --- Shirley-Arkansas-USA
Posted by kathy , Aug 28,2001,06:02 Top of Thread Archive
what about this cure they were talking about in the chicago symposium? i was allowing myself to get slightly excited.



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Re: Not ready fo hear/ Shirley

Re : Re: Not ready fo hear/ Shirley --- kathy
Posted by Virginia , Aug 28,2001,08:55 Top of Thread Archive
I guess you're going to have to get someone from the Chicago symposium to answer that. Nothing was said about it at the BEBRF conference.

One thing that was mentioned was stem cells. They were negative on that helping with BEB. The position was that the cause of BEB has to be found before a cure can be found.




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Re: Not ready fo hear/ Shirley/virginia

Re : Re: Not ready fo hear/ Shirley --- Virginia
Posted by kathy , Aug 28,2001,09:05 Top of Thread Archive
yes i know about the stem cells. they are hopeful to find a cure for parkinson's with those. i was also under the assumption that any research done on P.D. was helpful because both disorders were found in the same part of the brain. you did read the e-mail from the Chicago symposium about dbs surgery and the combination of drugs that was to help cure all dystonias?



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Re: Not ready fo hear/ Shirley/virginia

Re : Re: Not ready fo hear/ Shirley/virginia --- kathy
Posted by Virginia , Aug 28,2001,09:23 Top of Thread Archive
I got the email, but it didn't have a lot of details in it. I would like to know more about it, too.



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Re: Not ready fo hear/ Shirley

Re : Re: Not ready fo hear/ Shirley --- kathy
Posted by Shirley-Arkansas-USA , Aug 28,2001,16:41 Top of Thread Archive
Hi Kathy, Like Virginia was saying, there was no mention of the "cure" from the Chicago symposium.
In the talk on genetics, it didn't even sound promising for finding a "genetic link" to Blepharospasm. There was promise in this field for some of the other dystonias. Some of these genes have been found or targeted. But, it was mentioned that any genetic link to BEB would be much more difficult and not in the near future.

Shirley in AR. who has been in a bit of a funk lately. Have tried to do too much in the past few weeks and I finally crashed. Trying to pick up the pieces, now, to continue on.




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