Re: [TMIC] TM and Lupus question
*Hi Jill, * ** *I have a friend with Systemic Lupus. She does chemo--Rituxan (Rituximab) which I also do, though for NMO. Yes, she has had multiple TM attacks, but her case is severe. Not all cases progress like hers has.* ** *Gracie* > > >
Re: [TMIC] Who else knew this about Gunny..? (Richard Boyle)
Currently, it seems that the only way anything is going to get done is if we, ourselves takes this bull by the horns and do something for ourselves. If anyone has any input, thoughts, ideas, criticisms etcplease let me know and they will be duly noted. Thanks, Kevin I'm trying to start a paratransit nonprofit where I live-- so I and others can shop and get around. There's no food delivery service here either. I wrote my congressman-- Massa and he said the lack of transport was a local thing, but Google collects paratransit stories for me and I have several from around the country that report stimulaus funds are being used to buy MORE paratransit busses! Akua --
[TMIC] test
[TMIC] TM and Lupus question
After 6 years and 2 TM episodes I finally got a diagnosis yesterday. I went from having TM to MS to no MS to Lupus. Oddly enough all "normal" lupus tests come back negative, but theres a new and specific one that came back positive. The crazy part is I was taking shots for MS since March! Good thing I went to a bigger and better hospital in the city. Do all of you out there with Lupus have multiple TM episodes? I know there is a whole spectrum of symptoms with Lupus. Do your doctors have you on any specific Lupus Meds? He just told me to take a baby asprin/day alond with Vitamin D and fish oil. Thanks for your input, Jill in Chicago
Re: [TMIC] tremors
Shaky hands or a feeling of shakiness or vibration internally can also be a sign of low blood sugar. Barbara H. http://barbarah.wordpress.com/ On Thu, Sep 17, 2009 at 7:24 PM, Jan Hargrove wrote: > *Alton,* > ** > *I've had some of the same shaky hands...can feel* > *it through my armsit doesn't happen often so* > *I decided after reading of like feelings from others* > *on here, it must be another Gift from TM. I've not* > *changed meds or any such, just hope it's not an* > *'age' thing!!! * > *jan Stillwater, OK* > ** > > > --- On *Thu, 9/17/09, Alton Ryder * wrote: > > > From: Alton Ryder > Subject: Re: [TMIC] tremors > To: "TMIC" > Date: Thursday, September 17, 2009, 4:01 PM > > > For some time now the shakes have been back. If I want to read a note, I > have to "carve" the letters one by one. > > Alton, who still takes the same amount of mysoline > > On Nov 25, 2007, at 4:33 PM, Alton Ryder wrote: > > > I've been on Mysoline/primidone 50 mg, once/day for seven years. Before > then my hands shook so badly, I was unable to write - almost as if I had > cerebral palsy. It took a while to take effect, then my shakes went away. > > > > Alton > >
Re: [TMIC] Support groups
No Jude, we're not breaking this group up.someone wanted to know about starting a support group in her state or some such after Gillian wrote of meeting another tmer face to face and how much she got from their meeting.I may not contribute often, but this group is an important part of my living with tm!! My 2¢ janh Stillwater, OK --- On Thu, 9/17/09, heyjude48...@aol.com wrote: Maybe I missed something...Is our large group breaking up? Are we forming small groups in each of our States or something? Will someone please explain what is going on with each of us giving up the State in which we live? I love our special TM group and will hate giving up the love between us. Without you I don't know what I would have done when Pam passed away. You all had my back and supported me until I could stand on my own. That's what we do for one another. Now we are doing it for Carol who just lost her loving husband, Jim and needs us to hold her up. She needs us. We need each other all of the time. I have had very close relationships with one or another of you at different times when I was desperate for a friend. I don't know how those friendships began, but when I needed you, one special person showed up. It has been difficult to figure out why certain people have been there for me at different times. Well, I'm tired...more about this later. Love to you all, Jude In a message dated 9/16/2009 5:22:14 P.M. Eastern Daylight Time, grace...@gmail.com writes: Grace Mitchell SW PA Devic's Support On Wed, Sep 16, 2009 at 12:54 PM, Cindy McLeroy wrote: Cindy McLeroy Support group leader for Southern CA Reply direcly to me if you are interested in joining our group. We've been going strong for almost 7 years.
Re: [TMIC] tremors
Alton, I've had some of the same shaky hands...can feel it through my armsit doesn't happen often so I decided after reading of like feelings from others on here, it must be another Gift from TM. I've not changed meds or any such, just hope it's not an 'age' thing!!! jan Stillwater, OK --- On Thu, 9/17/09, Alton Ryder wrote: From: Alton Ryder Subject: Re: [TMIC] tremors To: "TMIC" Date: Thursday, September 17, 2009, 4:01 PM For some time now the shakes have been back. If I want to read a note, I have to "carve" the letters one by one. Alton, who still takes the same amount of mysoline On Nov 25, 2007, at 4:33 PM, Alton Ryder wrote: > I've been on Mysoline/primidone 50 mg, once/day for seven years. Before then > my hands shook so badly, I was unable to write - almost as if I had cerebral > palsy. It took a while to take effect, then my shakes went away. > > Alton
Re: [TMIC] Support groups
Maybe I missed something...Is our large group breaking up? Are we forming small groups in each of our States or something? Will someone please explain what is going on with each of us giving up the State in which we live? I love our special TM group and will hate giving up the love between us. Without you I don't know what I would have done when Pam passed away. You all had my back and supported me until I could stand on my own. That's what we do for one another. Now we are doing it for Carol who just lost her loving husband, Jim and needs us to hold her up. She needs us. We need each other all of the time. I have had very close relationships with one or another of you at different times when I was desperate for a friend. I don't know how those friendships began, but when I needed you, one special person showed up. It has been difficult to figure out why certain people have been there for me at different times. Well, I'm tired...more about this later. Love to you all, Jude In a message dated 9/16/2009 5:22:14 P.M. Eastern Daylight Time, grace...@gmail.com writes: Grace Mitchell SW PA Devic's Support On Wed, Sep 16, 2009 at 12:54 PM, Cindy McLeroy <_cindymcle...@socal.rr.com_ (mailto:cindymcle...@socal.rr.com) > wrote: Cindy McLeroy Support group leader for Southern CA Reply direcly to me if you are interested in joining our group. We've been going strong for almost 7 years.
[TMIC] Hand Powered Generator
http://windstreampower.com/Human_Power_Generator.php "AC appliances can be used with the Human Power Generator by using a DC-AC inverter connected to a battery for stability (see our Portable Power Pack). It is also possible to directly power certain DC powered equipment such as a low power water pump without using a battery. Appliances such as a DC television, light or radio may also be used. However, with this application, a voltage regulator may be required and keep in mind that the electrical current delivered, follows the same rhythym of your pedaling - which is not constant. The amount of electrical power that can be generated by the Human Power Generator is determined by the energy available to turn the crank . The stronger the user, the more electrical power can be produced. Typical output in watts with the Human Power Generator is about 60 Watts or 35 Watts with handcranks. "Human Power Generator: $550.00 A battery is optimal and they offer a 12v Storage- Electromate 400 for $130 Sigh. So to get a back up and self powered energy source I would have to spend about $700. At least I now know it exists. --
Re: [TMIC] tremors
For some time now the shakes have been back. If I want to read a note, I have to "carve" the letters one by one. Alton, who still takes the same amount of mysoline On Nov 25, 2007, at 4:33 PM, Alton Ryder wrote: I've been on Mysoline/primidone 50 mg, once/day for seven years. Before then my hands shook so badly, I was unable to write - almost as if I had cerebral palsy. It took a while to take effect, then my shakes went away. Alton
Re: [TMIC] Looking for TMr's for support groups
Subject: Re: [TMIC] Looking for TMr's for support groups Linda Egli - Marshall, Texas >
Re: [TMIC] Looking for TMr's for support groups
Kathy from Minneapolis, Minnesota - Original Message - From: Trudy Ogilvie To: Catherine Cc: kevin weilacher ; Transverse Mylitis Group Sent: Thursday, September 17, 2009 1:57 PM Subject: Re: [TMIC] Looking for TMr's for support groups Trudy from Northern Virginia :) On Sun, Sep 13, 2009 at 9:25 PM, Catherine wrote: Kevin, That is a wonderful idea. Why don't we all just say where we are from .. as I have seen here. Several support groups may start. Thank you for a great idea So I will start... Catherine, caretaker Central Mass. From: kevin weilacher To: tmic-list@eskimo.com Sent: Saturday, September 12, 2009 4:59:53 PM Subject: [TMIC] Looking for TMr's from N.E. Ohio area Who here on the list is from what is classified as the N.E. Ohio area. I have the 2007-2008 TMA directory and I'm sure that there have been some changes or updates. I'm looking at trying to start a NE Ohio TMA support group. I know there is an Ohio support group but I believe the closest area is Columbus. Honestly, that is a bit too far for me to drive for support meeting get togethers. I know Gunny is on here and I know about Ella in Elyriacan anyone help me out..? I think we could benefit from something like thisespecially in light of the recent posting from Gilly...where she said that she just recently met another TM'r. How many others are out there that would like to meet another TM'r and you might have someone in your "back yard" so to speak that you don't know about. Thanks, Kevin -- Everything is possible for one who believes, still more for one who hopes, even more for one who loves"
Re: [TMIC] Looking for TMr's for support groups
Trudy from Northern Virginia :) On Sun, Sep 13, 2009 at 9:25 PM, Catherine wrote: > Kevin, > > That is a wonderful idea. Why don't we all just say where we are from .. > as I have seen here. Several support groups may start. Thank you for a > great idea > > So I will start... > > Catherine, caretaker Central Mass. > > -- > *From:* kevin weilacher > *To:* tmic-list@eskimo.com > *Sent:* Saturday, September 12, 2009 4:59:53 PM > *Subject:* [TMIC] Looking for TMr's from N.E. Ohio area > > Who here on the list is from what is classified as the N.E. Ohio area. > I have the 2007-2008 TMA directory and I'm sure that there have been some > changes or updates. > I'm looking at trying to start a NE Ohio TMA support group. I know there is > an Ohio support group but I believe the closest area is Columbus. Honestly, > that is a bit too far for me to drive for support meeting get togethers. > I know Gunny is on here and I know about Ella in Elyriacan anyone help > me out..? > I think we could benefit from something like thisespecially in light of > the recent posting from Gilly...where she said that she just recently met > another TM'r. How many others are out there that would like to meet another > TM'r and you might have someone in your "back yard" so to speak that you > don't know about. > > Thanks, > Kevin > > > -- Everything is possible for one who believes, still more for one who hopes, even more for one who loves"
[TMIC] OT ~ THE LARYNGOSPASMS
I know there are quite a few of you that are or were in the medical field so decided to share this trust me and click on the second link first!! These guys are great the one on the extreme right is a doll.I think I'm in love. :-) ~ Lynn Welcome to the official website of The Laryngospasms, a group of practicing Certified Registered Nurse Anesthetists that create & perform medical parodies for audiences throughout the United States. Since the group's inception at a 1991 Christmas party, the group has recorded two albums, three videos, and has been featured in numerous publications, radio & television shows. So c'mon in, kick off your shoes, grab your favorite beverage & enjoy! The Laryngospasms - Sleep Has Never Sounded So Good! - Home: _http://www.laryngospasms.com/index.cfm_ (http://www.laryngospasms.com/index.cfm) The newest Music Video from the Laryngospasms: YouTube - Waking Up Is Hard To Do: _http://www.youtube.com/watch?v=WOrjcLJ2IE0&feature=related_ (http://www.youtube.com/watch?v=WOrjcLJ2IE0&feature=related)
Re: [TMIC] Prunes for those with a sweet tooth
Okay girls.if you want to make this cake more healthy:-) do not use the corn syrupthat is the worse thing you can put in your bodyuse the honey. also.substitute olive oil for the veg. oil. I learned from a chef that you can substitute olive oil for any oil in your recipesand you can substitute butter in any recipe that calls for shortening or margarine. I've been a happy baker ever since. :-) ~ Lynn
Re: [TMIC] Who else knew this about Gunny..? (Richard Boyle)
*Hiya Kevin, * > > *Yes, Gunny's a great guy and, as you can see, a BUSY guy, but he always > takes his time out to help, if it's needed. He's been instrumental over the > years in helping several of our NMO members to get into Hopkins quickly, and > it's most appreciated. I'm looking forward to his next support meeting > because I'm gonna try to get myself out there. * > > *GO GUNNY! * > > *Hugs, Gracie* > > ** >
[TMIC] Who else knew this about Gunny..? (Richard Boyle)
He has been quite the proactive person over the years in trying to help get things done to help the TMA, to help Dr. Kerr and to help disabled peopled peopled in general. Over the last few months we've discovered that he's done some drumming for the 50's Doo-Wop group The Edsels, We found out that he also wrote a book called "Living With A Spinal Cord Injury, He founded the International Disability Coalition to try and help fund Dr. Kerr at Johns Hopkins who also just so happens to be his cousin. He also wants the IDC to be able to help disabled individuals with various things, such as supplies or assistance with things and he specifically spoke of a post he saw on here yesterday. Gunny sent me a note yesterday referencing the post from Akua and how she has to pay $88 a month to get someone to shop for her. That is utterly rediculous..!! Gunny would love to be able to have the means to provide a service to a person such as Akua with no charge to her either through volunteers or organizations donating their resources. Ultimately this is the type of thing we are shooting for. Anyway, I recently come across this bit of information. Click the link and read what it has to say...Extremely interesting. http://www.myelitis.org/articles/2605tmapr.htm How many of us knew that..? I didn't. When Gunny contacted me and asked me if I'd like to help him work on trying to get the IDC built up some more through a series of raffles and other ideas, I jumped at the chance. It seems that since President Obama lifted the ban on stem cell research nothing else has happened because there has been a total lack of funding for continued research. Currently, it seems that the only way anything is going to get done is if we, ourselves takes this bull by the horns and do something for ourselves. If anyone has any input, thoughts, ideas, criticisms etcplease let me know and they will be duly noted. Thanks, Kevin
[TMIC] OT any geeks out there?
Need math/physics geek. I know this is off topic, but I'm hoping that SOMEONE out there can help me. I'm putting up a website for people with disabilities and the template I have requires me to calculate the arc of the images (they have been cropped along an arc) so that I can paste new ones in without ruining the flash animation. Alternatively, anyone familiar enough with flash? -- Laura http://practical-homeschooling.org http://www.flickr.com/photos/khaleeka
Re: [TMIC] Prunes for those with a sweet tooth
No, I haven't.Maybe she will respond after seeing this message.Trudy, if you are reading this, let us know how you are doing - hopefully good! Linda and Janice - Original Message - From: L T CHERPESKI To: tmic-l...@eskimo.net ; Janice Sent: Wednesday, September 16, 2009 10:06 PM Subject: Re: [TMIC] Prunes for those with a sweet tooth Janice - I've been meaning to ask - have you heard from Trudy Ogilvie lately? Haven't seen her on here for quite some time??? A little worried about her. Linda - Original Message - From: Janice To: L T CHERPESKI ; tmic-l...@eskimo.net Sent: Wednesday, September 16, 2009 8:51 PM Subject: Re: [TMIC] Prunes for those with a sweet tooth Linda, Just think of all the weight you will lose with regular BM's!!! Janice - Original Message - From: L T CHERPESKI To: tmic-l...@eskimo.net ; Janice Sent: Wednesday, September 16, 2009 9:26 PM Subject: Re: [TMIC] Prunes for those with a sweet tooth Janice - this looks great! I'm can't wait to make it. The very best part of this is "pour the warm sauce over the cake as soon as it comes out of the oven" and I say eat it while it's still warm. Yum! Thanks - you know, looking at the recipe it looks like there might be a "few" calories in the cake - it's ok though when we're doing it for our health, right? Linda - Original Message - From: Janice To: tmic-l...@eskimo.net Sent: Wednesday, September 16, 2009 8:10 PM Subject: [TMIC] Prunes for those with a sweet tooth All TM'ers, I came across this cake recipe containing prunes. It is for real, and I know some that have made it and really liked it. If you want to try it, here it is: 1/2 cup veg. oil Preheat oven 375 degrees 1 1/2 cups sugar Grease & flour 9x13 inch pan, set aside 3 large eggs Mix all ingredients in order given & blend well 1 cup buttermilk Pour into prepared pan 1 tsp vanilla Bake for 35-45 minutes or til cake springs back 1 tsp allspice when pressed in the center 1 tsp nutmeg Remove from oven. Pour sauce over cake immediately 1 tsp cinnamon 1 tsp baking soda 1 tsp. salt 2 cups flour 1 cup mashed prunes 1 cup chopped nuts - optional The Sauce: 1 cup sugar 1/2 cup buttermilk 1/2 tsp baking soda 1 tsp light corn syrup or honey 1/2 cup butter Combine all ingredients in large saucepan Cook til butter is melted. Boil 3 minutes, stirring constantly Pour over cake as soon as it comes out of oven Hopes this helps, Janice
Re: [TMIC] Prunes for those with a sweet tooth
I just hope it works for you and is really good for any of the others that try it! Janice - Original Message - From: L T CHERPESKI To: tmic-l...@eskimo.net ; Janice Sent: Wednesday, September 16, 2009 10:05 PM Subject: Re: [TMIC] Prunes for those with a sweet tooth Yep, I actually did think about that and decided it would be ok if I just starting eating it right out of the oven! You know what a "health nut" I am.I'm going to be such a happy camper Linda - Original Message - From: Janice To: L T CHERPESKI ; tmic-l...@eskimo.net Sent: Wednesday, September 16, 2009 8:51 PM Subject: Re: [TMIC] Prunes for those with a sweet tooth Linda, Just think of all the weight you will lose with regular BM's!!! Janice - Original Message - From: L T CHERPESKI To: tmic-l...@eskimo.net ; Janice Sent: Wednesday, September 16, 2009 9:26 PM Subject: Re: [TMIC] Prunes for those with a sweet tooth Janice - this looks great! I'm can't wait to make it. The very best part of this is "pour the warm sauce over the cake as soon as it comes out of the oven" and I say eat it while it's still warm. Yum! Thanks - you know, looking at the recipe it looks like there might be a "few" calories in the cake - it's ok though when we're doing it for our health, right? Linda - Original Message - From: Janice To: tmic-l...@eskimo.net Sent: Wednesday, September 16, 2009 8:10 PM Subject: [TMIC] Prunes for those with a sweet tooth All TM'ers, I came across this cake recipe containing prunes. It is for real, and I know some that have made it and really liked it. If you want to try it, here it is: 1/2 cup veg. oil Preheat oven 375 degrees 1 1/2 cups sugar Grease & flour 9x13 inch pan, set aside 3 large eggs Mix all ingredients in order given & blend well 1 cup buttermilk Pour into prepared pan 1 tsp vanilla Bake for 35-45 minutes or til cake springs back 1 tsp allspice when pressed in the center 1 tsp nutmeg Remove from oven. Pour sauce over cake immediately 1 tsp cinnamon 1 tsp baking soda 1 tsp. salt 2 cups flour 1 cup mashed prunes 1 cup chopped nuts - optional The Sauce: 1 cup sugar 1/2 cup buttermilk 1/2 tsp baking soda 1 tsp light corn syrup or honey 1/2 cup butter Combine all ingredients in large saucepan Cook til butter is melted. Boil 3 minutes, stirring constantly Pour over cake as soon as it comes out of oven Hopes this helps, Janice
[TMIC] Looking for TMr's for support groups
*Bernie Pelow :-) Austin, Texas 78723 (Northeast Austin) *
