Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Belinda & Vera, Your not the only one to lotflmao, I am her husband and she keeps me in stitches all the time... I have no idea where she comes up with most of what she either saids... or does...The sheet deal sounds like a 12 or 14 year old hidding from there parrents... It must be nice to be 40 and reverting back..lol.. she is nuts.. I suppose that is what makes things eaiser living with MSA.. There is not a day that goes by that she doesnt make me roll on the floor... she is truly gifted.. I appreciate all of you out there.. It is so nice to see her face light up when she talks about or in in one of your chat rooms or just responding to one of you at Shy-drager. God Bless all of you for your spirit and dedication to this ordeal that each and every one of you go through.. " TENACITY'S MAN " >From: shydrager >Reply-To: shydrager >To: shydrager >Subject: Digest Number 1464 >Date: 7 May 2002 05:24:17 -0000 > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > >------------------------------------------------------------------------ > >There are 25 messages in this issue. > >Topics in this digest: > > 1. RE: Re: Jack Mears > From: FVJAMES@... > 2. server > > 3. Boston Conference > > 4. Reminder - SUPPORT GROUP MEETING: Minneapolis/St.Pa... > From: shydrager > 5. Reminder - STREAMING VIDEO WEBCAST on Alpha Synucle... > From: shydrager > 6. Call your Senator > > 7. Subject: Re: Subject: Subject: Re: Faithful...Vera, Deborah > From: FVJAMES@... > 8. Boston meeting > > 9. Re: Boston meeting/Bill > > 10. Subject: Subject: Re: Faithful...Vera, Deborah > > 11. Re: Boston meeting > > 12. RE: Boston meeting > > 13. Re: Re: Jack Mears > From: BeckyPoast@... > 14. Re: Re: Boston meeting > > 15. Re: Digest Number 1461 > From: asbpud@... > 16. Re: Sor sorry for your loss > From: BandEGrimmesey@... > 17. Re: New Member > From: Macklockj@... > 18. Re: Re: Jack Mears > From: Macklockj@... > 19. Re: Need your opinion-CINDY > > 20. Re: Digest Number 1451 > From: MBur234@... > 21. Re: Re: Marg and living in BC; my grandfather>Marg & group > > 22. Boston > > 23. Conference by NDRF - July > > 24. Re: Willy -welkom; Down-under-Bill; Marge - raging grannies; > > 25. angry and funny all the time; > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 1 > Date: Mon, 6 May 2002 03:11:14 EDT > From: FVJAMES@... >Subject: RE: Re: Jack Mears > >Judy: >I know God has his timing, but it still doesn't make it any easier to lose >the ones we love. I hope it help you to know that you made the different in >Jack's life, when it would of been so hard to have gone it alone, you were >there for him. >My prayer's are with you . >Vera > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 2 > Date: Mon, 06 May 2002 00:32:54 -0700 > >Subject: server > >I'm getting lots of duplicate digests, and am missing some in >between. Just read them on-line lately, but it is a pain using one program >to read and another to write. >Note: taking a shower and washing out the tub is a dumb thing to do when >you're woozy. Just call me old lumpy-head. > >aletta mes >vancouver, bc Canada >web: http://aletta.0catch.com > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 3 > Date: Mon, 06 May 2002 06:46:03 -0400 > >Subject: Boston Conference > >Thanks to all who made the Conference in Boston possible and to those who >were able to attend. This is no small undertaking, especially considering >this is the makeup after the cancellation due to 911. I am sure all of us >look forward to the benefits of the Conference and to hearing about them. > > Sennewald Charlottesville, Virginia > > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 4 > Date: 6 May 2002 11:02:14 -0000 > From: shydrager >Subject: Reminder - SUPPORT GROUP MEETING: Minneapolis/St.Pa... > > >We would like to remind you of this upcoming event. > >SUPPORT GROUP MEETING: Minneapolis/St. Area > >Date: Thursday, May 9, 2002 >Time: 11:00AM GMT > >This group meets the second >Thursday of each month with >a speaker usually every other month. > >For more information call Ginny at >email: vober123@... >or call >ine at > > > > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 5 > Date: 6 May 2002 12:02:03 -0000 > From: shydrager >Subject: Reminder - STREAMING VIDEO WEBCAST on Alpha Synucle... > > >We would like to remind you of this upcoming event. > >STREAMING VIDEO WEBCAST on Alpha Synuclein > >Date: Monday, May 13, 2002 >Time: 12:00PM GMT > >View this on the web live at: >http://videocast.nih.gov/default.asp > >If you miss this event it will still be available in the >archives for later viewing. > >Regards, >Pam > >------ > >http://videocast.nih.gov/FutureEvents.asp#52002 > >Neurodegenerative Diseases: What Has Alpha Synuclein Got To Do >With It? > >Program date and time: >Monday, May 13, 2002, 12:00:00 PM > >Description: >The NIH Neuroscience Lecture Series features lectures and >discussions with leading neuroscientists. Sponsored by NINDS, >NIMH, NIDCD, NIDA, NEI, and NICHD, this year's series offers >advances that span the areas of molecular, cellular and >organismal neuroscience. > >For more information, visit the >University of Pennsylvania Institute on Aging >http://www.uphs.upenn.edu/cndr/ >http://www.uphs.upenn.edu/aging/ > >Author: >Virginia Lee, PH.D., University of Pennsylvania > >Runtime 75 minutes > > > > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 6 > Date: Mon, 06 May 2002 10:30:12 -0400 > >Subject: Call your Senator > >Hi all, > >This morning I received the message below about medical research. I >urge you to read this information as there is so much false and/or >misleading " information " flying around right now. The new Senate Bill >S. 2439, IS a Bipartisan Bill and it is backed by people who truly >believe in saving lives such as Senators Orrin Hatch (R-UT), Arlen >Specter (R-PA), Dianne Feinstein (D-CA) and Kennedy (D-MA). If >you follow politics at all, you must know that these people do not >always agree and are often at complete opposite ends of politics. Yet >they agree that this Bill will stop ALL reproductive cloning (cloning of >a human being) and still allow individual human cells to be grown. >Since the Bill bans growing the cells in any womb or even an artificial >womb, the cells can NOT become as human being as is claimed by false >advertising on TV at the present time. Take the time to read about the >debate - remember that these cells MUST have all the chemicals supplied >by a womb to become a human. Giving them the two or three chemicals >needed to become a specific type of brain cell does not even mean they >could become a complete brain. At best, we hope they could repair >several types of brain cells by replacing dead cells they found in the >brain and taking leftover info from the dead cells to grow into that >type of cell. > >S. 2439 STOPS cloning of humans, but allows cloning of certain human >cells to save lives - please support this anti-cloning Bill. > >Take care, Bill Werre > >-------------------------------------------- > >Urgent! Action Alert > >MAY 8TH CALL YOUR SENATORS > >The Coalition for the Advancement of Medical Research is Coordinating a >Call-Your-Senators Day – May 8th > > Call the Capitol >Switchboard at > > Thank you for all of your hard work, but we cannot stop now. The >Senate will vote in the next few weeks on legislation that would ban >somatic cell nuclear transfer technology (SCNT, sometimes called >therapeutic cloning). The Coalition for the Advancement of Medical >Research (CAMR) is coordinating a Call-Your-Senators Day, May 8th. >Please spread the word and ask your friends and family to call the >Capitol Switchboard at , and ask to speak with your >Senators’ office. Tell them why you believe SCNT research must be >allowed to continue. > >As you know, the Senate has already held hearings on S. 1899, a bill by >Senator Sam Brownback (R-KS) and Senator Landrieu (D-LA) that would >ban all cloning including >SCNT; put researchers in prison; and deny patients the benefit of any >therapies developed from therapeutic cloning outside the United States. > >This week, Senators Orrin Hatch (R-UT), Arlen Specter (R-PA), Dianne >Feinstein (D-CA) and Kennedy (D-MA) have joined together to >sponsor S. 2439, legislation that would ban reproductive cloning to >create children, but permit privately funded research involving SCNT. >This legislation is widely supported among scientific, medical, and >patient groups. The Senate may vote on this bill as well. > >WHAT SHOULD YOU DO? > >Two Steps: > >1. Click http://www.camradvocacy.org/> to be taken to the website of >the Coalition for the Advancement of Medical Research. This site will >provide background information on the >current debate. > > 2. Coordinate with your friends and family to call the Capitol >Switchboard, , on May 8th and urge your Senators to SUPPORT >S. 2439, THE >SPECTER/FEINSTEIN/HATCH/KENNEDY BILL AND OPPOSE S. 1899, THE >BROWNBACK/LANDRIEU BILL, which will criminalize potentially life-saving >medical >research. > > Make your support of >SCNT known!!!!! > > Message points for your call: > > · Somatic cell nuclear transfer (SCNT) is not the science >fiction you see in movies, but rather a reasonable and appropriate way >to alleviate the horrors faced by patients suffering from deadly and >painful diseases. > >· Cloning is widely used, vital medical tool that has allowed >scientists and researchers to develop powerful new drugs; produce >insulin and useful bacteria in the lab; track the origins of biological >weapons; catch criminals and free innocent people; and produce new >plants and livestock to help feed an undernourished world population. > >· The nation’s leading scientists, including two prestigious >committees of the National Academy of Sciences, agree that cloning to >reproduce humans should be illegal, but that SCNT (or therapeutic >cloning) should be permitted. > >· SCNT is a research technique to develop cells that can be used >to treat or cure chronic and degenerative diseases and disorders. The >process has nothing to do with sexual > reproduction. Its sole purpose is research to meet unmet medical >needs. > >· By moving stem cell research forward, SCNT could bring new hope >to the nearly 100 million Americans who suffer from cancer, Alzheimer’s, >diabetes, hepatitis, Parkinson’s disease and other devastating >conditions for which treatments must still be found. > >· SCNT allows a patient’s own genetic material to be used to >develop advanced stem cell therapies. These therapies—including >transplants and transfusions-- would be tailored to > match each patient’s specific medical condition and dramatically >reduce the possibility of causing the patient’s immune system to attack >and reject the therapy. > > The Brownback bill would have devastating results. > > It would: > > Ban SCNT, or therapeutic cloning, cutting-off hope to millions of >Americans with life-threatening diseases; > > Make it illegal for U.S. citizens to seek SCNT treatment abroad; > > Send a U.S. scientist to jail for developing SCNT therapies in a >petri dish; > > Make it illegal for U.S. scientists to import SCNT therapies that >were developed in other countries. > > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 7 > Date: Mon, 6 May 2002 11:55:51 EDT > From: FVJAMES@... >Subject: Subject: Re: Subject: Subject: Re: Faithful...Vera, Deborah > >Ok! Deborah: >I just want to know what you did last night to make the nurse's laugh? You >know I'm keeping notes of all these things . I'm calling it Deborah list of >how tooo's make the nurses nuts or thing's to pass the time and make life >fun >while in the hospital. And! you have to know I just loved the song. I don't >know what it is about that tune " oh where has my little dog gone " but that >seem's to be the song that most people pick to change the word's on, when >your bored or waiting for something. I know I did it when I was talking to >my friend Dolly on IM's and she had a phone call and said she would be >right >back. Well I waited and waited and waited, then I got bored and starting >singing and writting the word down to her in the Im's. It turned out to be >the longest im's message waiting for her when she got back. Oh! where Oh! >where has Dolly gone, oh! where oh! where can she be? With her hair cut >short >and her eyes so brown .Oh! where oh! where can she be. (hey! come to think >about it she hasn't left me for along phone call since...wonder why? ) >Keep the list coming, but make sure this is the last time that you are >there >in the hospital . I love the list of how toooo's, but don't think the >nurses >can take to many more belly laughs . I think it's time for you to go home >and make other's laugh. Like us here on this group. > >I think I'm older then you and you know what they say... you got to listen >to >people who are older then you. Anyway you know I'm right ....Time for you >to >be home and out of those hospital's > >Keep smiling... >Hugs Vera >*************** >Subject: Re: Subject: Subject: Re: Faithful...Vera, Deborah > >The nurse walked in around 4 A.M. and had to leave the room.. I quietly got >out of bed to see what she wanted. I found her leaning against a wall, hand >on her stomach and bent over laughing hysterically with tears rolling down >her cheeks. > >Hey, I thought it was a good idea and since I am bigger than I was the last >time I did it, I simply put the laptop on the dinner tray table that rolls >over the bed, pulled the cover up over the pc and me and then double >darkened the room by putting my bathroab on top of it all. > >Upon entering the room, you see a 59 year old man lying on a couch in his >clothes and a blanket snoring... pan to your right and there is an >illuminating glow coming out of this triangular nest in the middle of the >electric hospital bed... of couse the knees were raised so the dystonia of >the right foot was doing it's own thing at the end of the bed... no face, >no >body could be found... wiggling at the end of the bed, triangular lit >oraface and that it. > >Sung to the tune of oh where oh where has my little dog gone. > >oh where, oh where did my brain damaged patient go >Oh where, oh where can she be > >With a hole in her head >and a rash on her bod >oh where oh where could she be > >I'm sure other tunes could be made up with much more interesting lyrics but >heck it's late and what does a 40 year old woman who gets caught in this >position do to justify it? I didn't want to wake my husband does not >superseed the sheer oddity of it all.. so laugh away ladies and gents... >I'll try to deflect the little embarrasments that you go through... > >Think about it... now when someone says, I can't belive you did that.. you >can respond with... well, at least i didn't do what tenacity did.... blaa >blaa blaaa blaa blaa. > > stayed home tonight so i'll be online until i get tired... yahoo im >name is tenacitywins2 and .Net name is HREF= " http://groups.yahoo.com/group/shydrager/post?protectID=189056234237185132\ 050097051026006088136058066192197079172142172194143142 " >tenacitywins@h... >if any of >you are up and around. I'm usually hiding so im me anyway. > >Hugs and warm fuzzies, >Deborah > >[unable to display image] > > > > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 8 > Date: Mon, 06 May 2002 12:21:01 -0400 > >Subject: Boston meeting > >Hi all, > >Here are my impressions and thoughts on the Boston Conference. > >First, I feel this was a great meeting from every aspect. The location >was terrific, for a dollar a person in a few minutes you could reach >most parts of Boston via the subway which was much nicer than most >subways I have been on. Sightseeing was easy, shopping was easy and >eating places abounded. Carol can tell you the names of the places, but >there was a block long building with every kind of food imaginable near >the aquarium which was about a 6 minute subway ride from the airport. >The hotel was very nice and my room was great. > >Meetings > >The doctors seem hopeful that some help is on the way and that we can >see progress within a couple of years, particularly with drugs now in >human tests. BUT a cure is still off in the future. They are hopeful >that a " major breakthrough " may even come from unrelated research such >as fruit fly genetic research. To me this more indication that we need >to have an open discussion of the morals and ethics of medical research >and come up with standards acceptable to the majority of the people in >the USA rather than a few people who make these decisions which can >affect so many people. In one case, someone mentioned that, in time - >the general public would accept stem cell research - but Tony >Swartz-Lloyd pointed out that not all of us have time to wait. ) You >all know that I agree with that, and in Charlotte's case it is already >too late, so my only selfish reason at this point is to beat this >terrible disorder for others. I don't want to be telling caregivers ten >years from now to take their patient to the ER immediately. > >For list members, the fiber thing was the only semi-new thing I got >which we had not pushed before. We heard confirmations of things the >list has pushed - hydration, work with doctor to control BP, exercise >helps control symptoms, etc. There was a confirmation also of our >recent discussion of the " brain fog " in that there is a slight frontal >lobe deterioration in some to many patients (as yet not described >carefully in literature) which causes a slight reasoning problem. This >is probably the " brain fog " that Fisher and others have described. >While it is a problem with handling logical decisions and working at a >job, it is no where near dementia. ) I know , it IS still a >problem, but so is balance or movement. I do stand corrected that it is >a symptom of MSA, however it is still more of a problem in PSP or CBGD. > >Name of the disorder - several doctors are not happy with MSA as a name, >but it is the " official name " at this time. Doctors admit that MSA may >still be several related or even unrelated disorders and that more >research is needed to identify it. There is even a question of how >related to PD it is, so Parkinson's Plus is not an ideal name. So like >the disorder, this is a tough question. > >I feel the topics discussed were also great. We had a wide variety of >topics ) even one on handling crappy details ) Dr. Anastopoulis is >a specialist in the digestive system and really pushed eating a high >fiber diet - but one that the patient could tolerate, especially a diet >high in citrus fruits and dried fruits such as raisins. prunes, etc. He >also pushed hydrating any fiber before it went into your body. Things >like mixing any fiber supplement with something like applesauce or >pudding is much better than taking a fiber pill, which may or may not >dissolve correctly in the body. He advocates saving medical procedures >for emergency use and working on diet to obtain regularity as much as >possible. > >The people at the conference was the same as the list, everything from a >great knowledge of the disorder to newbies who knew nothing about it. >While this is good, it does create problems as everyone wants to learn >something different. Experienced people want to learn current >directions in care and research, while newbies just want to know what is >going on with their lives and what is coming. Experienced people are >talking doctorese such as ataxia, dysphagia and orthostatic hypotension >and some newbies have no cure as to what we are talking about. ) >Actually I had no idea of some words the doctors used - but got some >meaning from context of the discussion. > >Sunday morning we (about a dozen caregivers/patients) had a great open >discussion with members of the SDS/MSA National Board about what the >National group is doing; long range plans; and where patients/caregivers >feel it should be going. I think it was a very constructive meeting >which showed great promise of improving communications and working on >obtainable goals for all of us. We now have several people who have >been identified as volunteers to work on specific tasks. Things we >talked about: > >***Research - setting up a method of getting and granting research grant >funding. Note that it does take great sums of money to do scientific >research and that it may be some time before we have enough funds to >provide a grant. But hopefully by this time next year, we will have >established a procedure for how to do it and a fund specifically for >research. > >***Handling volunteers and giving them direction. This is another area >that was discussed and a promise was made to work on communications in >this area. Hopefully we will hear soon about how this will be handled. > >***Finances - The National group is currently getting a grant from Shire >Pharmaceuticals of $20k per year, but the patent runs out next year and >we will probably lose that at that time. Since that money goes to >support the conferences and the 866-SDS-4999 number, we will need money >to support this type of thing in the future. All of us know that there >is a need for funds to handle the everyday expenses of running any type >of national office and this is an area we will have to face in the >coming years. > >Other issues were discussed such as a better brochure to pass out to new >members with tips such as the one discussed by the list for years, a >brochure to put in doctors offices and one for doctors themselves. >However time ran out and many had to catch airplanes or start their >drive home. So this will be an ongoing discussion. It is important >that we keep this communication going, so that everyone knows what >people want from their National organization. Several members of the >Board are members of the list although they do not always respond in >writing (just as many of you only listen). Feel free to offer your >suggestions on this list as to direction you would like to see from our >National group and what you can do to help. A good way to begin, is to >compile a list of all your doctors (off list). We need to work out >details in the next weeks, but we want a list of doctors who at least >have been exposed to MSA, along with their name, address, and phone >number. Then we will work on getting brochures about MSA into their >offices. > >Trying to cram all my thoughts on a great weekend into one email is not >an easy task. I hope this gives you all a brief glimpse at what we did >and the magnitude of MSA. I hope that we have started to give direction >to both the list and the National group and form a strong partnership >that will grow to meet every need of brain disorder(s) patients and >caregivers. We all want one unified voice speaking for MSA patients and >caregivers. All in all, I feel it was a great success and want to thank >the National group and all involved for doing an excellent job on this >conference. The audio tapes are in the hands of a volunteer for >editing. Someone else will have to give you details as that is >completed. > >Take care, Bill Werre > > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 9 > Date: Mon, 06 May 2002 11:30:50 -0500 > >Subject: Re: Boston meeting/Bill > >Thanks Bill. > >[image]We really worked hard while you were gone. > >Barb > >-- > " When we do the best that we can, we never know what miracle is wrought >in our life, >or in the life of another. " --Helen Keller > > > >[This message contained attachments] > > > >________________________________________________________________________ >________________________________________________________________________ > >Message: 10 > Date: Mon, 06 May 2002 18:52:58 -0000 > >Subject: Subject: Subject: Re: Faithful...Vera, Deborah > >Deborah, >You make the cloudy days seem like it's a beautiful sun filled day. >Gotta love ya and I do. Thanks for the laugh! >God bless, >Belinda > > > > > > > > > Belinda: > > > > > > Deb tolded us today on the chat, that she has a laptop with her. > > Only she's > > > hidding it under her pillow, so the nurses won't find it. > > > > > > Ask her about the tent? Go ahead and ask her? ) > > > She does try to have some fun when she goes in the hospital. >Can;t > > blame her. > > > > > > Hugs Vera > > > > > > > > > > > > > > > Subject: Subject: Re: Faithful... Deborah > > > > > > Deborah, > > > What are you doing in the hospital again? Do you have a laptop >with > > > you? I am praying for you, sweety. I hate this so much for you. > > > Please keep us up to date on how you are! You have been through >so > > > much! > > > God bless with love and gentle hugs, > > > Belinda > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 , Thank you for your kind words. I have to ask you a question though. You are at the beach, the weather is beautful, you have sand on your toes, and salt watered air on your skin. The most important thing though is you have a woman who isn't in any pain. So what are you doing on the computer? You might just get lucky! >grins> God bless, Belinda > > > > > > > > Belinda: > > > > > > > > Deb tolded us today on the chat, that she has a laptop with her. > > > Only she's > > > > hidding it under her pillow, so the nurses won't find it. > > > > > > > > Ask her about the tent? Go ahead and ask her? ) > > > > She does try to have some fun when she goes in the hospital. > >Can;t > > > blame her. > > > > > > > > Hugs Vera > > > > > > > > > > > > > > > > > > > > Subject: Subject: Re: Faithful... Deborah > > > > > > > > Deborah, > > > > What are you doing in the hospital again? Do you have a laptop > >with > > > > you? I am praying for you, sweety. I hate this so much for you. > > > > Please keep us up to date on how you are! You have been through > >so > > > > much! > > > > God bless with love and gentle hugs, > > > > Belinda > > > > > > > > > If you do not wish to belong to shydrager, you may > > > unsubscribe by sending a blank email to > > > > > > shydrager-unsubscribe@y... > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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