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23 Mar 02 - 12:38 PM (#674834) Subject: MS support for and from Mudcatters From: CapriUni This is a continuation of BS: No where else to go... . Click here for the full story so far. |
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23 Mar 02 - 01:14 PM (#674856) Subject: RE: BS: MS support for and from Mudcatters From: Celtic Soul I listed a bunch of links some time ago, and I am not very adept at retrieving them, so I'll post some more now. I know, as a person who has struggled for most of my adult life with health issues, that not every avenue is the right one for everyone. But, it's always worth a look, just to see. The following websites were found doing a dogpile search, using the search parameters of "Bee venom therapy", "MS treatment" and "Alternative MS treatment". As a disclaimer, I have not perused the entirety of each and every one of these sites....Here goes: #1.) http://www.dancingbeeacres.com/beevenom.html #2.) http://www.beevenom.com/ #3.) http://www2.shore.net/~spectrum/apitherapy.html #4.) http://www.beelief.com/beestings.html #5.) http://www.metroactive.com/papers/cruz/11.21.96/bees-9647.html #6.) http://www.gilbertsville.com/bee/beejournal4.htm #7.) http://www.komotv.com/news/nindexaction.asp?ID=768 #8.) http://www.cnn.com/HEALTH/9711/17/ms.treatment/ #9.) http://www.msnews.org/ #10.) http://ourworld.compuserve.com/Homepages/cheitz/mse.htm #11.) http://www.medicaltruth.com/MS/others.htm #12.) http://www.netcomuk.co.uk/~abarnes/ms.html |
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23 Mar 02 - 02:19 PM (#674897) Subject: RE: BS: MS support for and from Mudcatters From: CapriUni Blicky-fied:
#1.) www.dancingbeeacres.com/beevenom.html |
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23 Mar 02 - 03:14 PM (#674933) Subject: RE: BS: MS support for and from Mudcatters From: Art Thieme Primary progressive MS is my diagnosis. None of the 3 main drugs do anything for that except give one numerous heavy duty side effects. In another thread on "musicians health problems" I think I laid out the facts of my ultimately being, finally, diagnosed after having had four spinal surgeries complete with multiple neck fusions for the same damn symptoms with no lasting results except more deterioration. I'd had MS for 15 years before it dawned on someone that it might be MS. Yep, I was pissed. But it was LIBERATING to finally know, at least, why the hell I can't pick now and what my myriad symptoms probably came from. Bottom line is: All we really know for sure is that the more things change, the more they get different ! Take what you are left with and enjoy the hell out of it !! Love to you all, Art Thieme |
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23 Mar 02 - 03:54 PM (#674955) Subject: RE: BS: MS support for and from Mudcatters From: SharonA Annamill: I have no advice or resources to offer, but I sure am thinking of you and your daughter as you sort out all this. I'm sorry to hear that her diagnosis was so serious. Hang in there, and remember that you've got lots and lots of shoulders to lean on (and cry on as necessary). Sharon |
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23 Mar 02 - 05:11 PM (#674987) Subject: RE: BS: MS support for and from Mudcatters From: CapriUni From Art: "The more things change, the more they get different." LOL! Love it ;-) and: "Take what you are left with and enjoy the hell out of it !!" Bravo, Brother! Tell that truth! As country singer Roger Miller put it so eloquently:
You can't roller-skate in a buffalo herd, There are always going to be things that we can't do, and doubtless some days it will seem like those things outnumber the ones in the "Can Do" column. But take the long view, and all of them seem pretty silly in comparison to the ability to love and be loved, and to experience Joy. |
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23 Mar 02 - 05:21 PM (#674992) Subject: RE: BS: MS support for and from Mudcatters From: catspaw49 Or as Art is also fond of saying and quoting Woody........."Take it easy....but take it." Spaw |
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23 Mar 02 - 10:47 PM (#675178) Subject: RE: BS: MS support for and from Mudcatters From: CapriUni Yes, I often quote Woody's "Take it easy..." line, too. |
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23 Mar 02 - 11:28 PM (#675205) Subject: RE: BS: MS support for and from Mudcatters From: Art Thieme There was an old Lenny Buce album on Fantasy Records where he'e pictured on the cover reading a book called PIGS ATE MY ROSES. Some day I want to do a CD with that title. ;-) I love it. You've got to have a sense of humor, or it isn't funny !! I think that refers to LIFE in general. Art |
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02 Apr 02 - 10:27 AM (#681502) Subject: RE: BS: MS support for and from Mudcatters From: annamill Hi Everyone! I'm back. I've been either too busy or too sick this week to post. Thank you so much, CapriUni, for starting this new thread. It's been a tough week. Amy and Robert were married yesterday. They were planning on being married anyway, but they had to rush it because Amy's insurance was running out and they have to get her on his insurance. My fears were unfounded. He truely loves her and is very concerned. It was a beautiful small, quiet wedding. Amy was able to stand and walk, though we did get her flat shoes so she wouldn't fall. She had a beautiful wedding dress. My Granddaughter, who insisted that she was marrying Bobby too, also looked beautiful in her pink dress. Amy feels her eyesight is getting better, at least in one eye. Today she starts her Avonex. The Avonex lady is coming over to teach her and Robert how "to shoot herself up" as Amy calls it. They are both terrified. Thank you all so much for all the info and links. I've already spoken to Amy and after she watches her Avonex tape, she might be able to come in and check them out. She has found her magnifier on the system. We still haven't secured the financing, but with your help and the help of her doctor, and the MS Society, we might manage it. Art, I have several of your albums, including the Vinyl, and what you posted here hurts me and I love you. Thank you. Thank you all. Love, Annamill |
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02 Apr 02 - 10:35 AM (#681509) Subject: RE: BS: MS support for and from Mudcatters From: kendall My brother had a military wedding. Well; there were guns there... |
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02 Apr 02 - 10:51 AM (#681518) Subject: RE: BS: MS support for and from Mudcatters From: Dharmabum Hi Anna, I did my injection last night so I feel a bit "flu like" today. The nice thing about Avonex is that it's only a once a week deal.Once I got past the psychological aspects of poking myself with a needle,it realy wasn't that big of a deal. Best wishes to Amy & Robert. It's so nice that she's got someone to help her through this. Ron. |
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02 Apr 02 - 11:19 AM (#681537) Subject: RE: BS: MS support for and from Mudcatters From: CapriUni Amy and Robert were married yesterday. .... He truely loves her and is very concerned. Yay!! Congratulations and warm wishes to them both... You know, up until 1564, April 1st was the day of the New Year. I take this date as a good omen for them -- a fresh new beginning in the season of spring. And they are starting with "For worse". Now that Amy will be getting treatment, it will only be getting better! It was a beautiful small, quiet wedding. Amy was able to stand and walk Hooray! though we did get her flat shoes so she wouldn't fall. Personally, I think high-heeled shoes should be banned. I just don't get the point. I positively cheered that one year, when Cybelle Shepard wore sequinned sneakers to the Emmies ;-) |
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02 Apr 02 - 12:04 PM (#681573) Subject: RE: BS: MS support for and from Mudcatters From: SINSULL Annamill, Congratulations to the newly married couple! Best wishes for a long and happy life. Love, Mary |
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02 Apr 02 - 02:26 PM (#681693) Subject: RE: BS: MS support for and from Mudcatters From: Mr Red New Scientist, February 9th, Page 32. In an article on fecundity and the adviseblity of much and frequent sex - (that's got em rushing to the NS website) in the penultimate para it mentions MS. This is one of those obscure references that seems to me will prove, in time, be way out of proportion to it's apparent appropriateness now. it refers to the protein TGF beta - no I never heard of it before either. |
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02 Apr 02 - 03:54 PM (#681750) Subject: RE: BS: MS support for and from Mudcatters From: Mary in Kentucky Congratulations Amy and Robert! Such a beautiful love story. I'm reminded of my 70-something-year-old uncle who was a widower and asked his grown children how they felt about him remarrying. His intended was going through by-pass surgery, and his daughter told him, "You'll be with her anyway." (meaning, he was already committed, marriage just came later.) You'll have years of happiness because you already know what's important. Cheers! |
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02 Apr 02 - 05:01 PM (#681802) Subject: RE: BS: MS support for and from Mudcatters From: Hollowfox Felicitations to the happy couple! May they have as good a marriage as the wedding. |
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02 Apr 02 - 05:05 PM (#681805) Subject: RE: BS: MS support for and from Mudcatters From: GUEST,skippy See folkforms.org this is a u/k registered charity now in it's 13th. year. we are not able to help directly with individual cases but it is good to know just how many of the famous have appeared unpaid to raise the profile of this organisation to raise funds to help generally. We have an event in June this year with:- The Wilsons, M M Pollock, Fieldwork, Moira Craig Andy Turner. you too can attend all you have to do is get to Grove in Oxfordshire on Friday June 14 2002 and give me a mere £7-00 and I'll give ALL of it to Folkforms. for more gen. call 01235 765445 |
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02 Apr 02 - 05:57 PM (#681831) Subject: RE: BS: MS support for and from Mudcatters From: catspaw49 Wonderful news Anna and many hugs from here to all along with our best wishes and congrats to Amy and Robert!!! Pat and Karen |
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04 Apr 02 - 05:17 PM (#683145) Subject: RE: BS: MS support for and from Mudcatters From: GUEST,annamill's daughter Amy With my eyesight imptoving and with the help of the magnifier, i was finally able to read soime of your postings. It really means a lot that all of you are thinkimg of me and my mother. I've just been married, my eyesight is improving, my attaxia(sp) is mych better so i am able to go for ong walks when needed. I am going to try to hook up with a specialist in yhe area, and i have been in contact with an old friend who has had MS for 20 years, and he made feel better. I am not scared. I have a lot of people pulling for me and i am very strong emotionally and the doctor's tell me that i am otherwise 100% healthy. One doctor said I am the healthiest person with brain leisions she ever saw. (Just have to get past the idea of injecting myself, but til then I have my husband to do it, God bless him.) Thank you again for all the information...that was especially needed and appreciated. God bless you all Amy |
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04 Apr 02 - 05:28 PM (#683157) Subject: RE: BS: MS support for and from Mudcatters From: Mary in Kentucky Amy, you are indeed brave having your husband do the injections!!!!! My husband is a veterinarian and he couldn't do it!!!! Actually it's just not very convenient to find him when it needs to be done. Keep us posted and remember that we are all keeping you in our thoughts and prayers. |
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04 Apr 02 - 07:27 PM (#683256) Subject: RE: BS: MS support for and from Mudcatters From: CapriUni Yay, Amy! So glad that you've been able to join us "in person", so to speak, and that things are going well for you. Here's to a bright future stretching on ahead over the horizen! |
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04 Apr 02 - 11:31 PM (#683372) Subject: RE: BS: MS support for and from Mudcatters From: catspaw49 Nice to see you here Amy and all of us continue to keep our best thoughts and wishes coming your way.......your Mama's too.....and that neat sounding hubby you just got. Spaw |
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05 Apr 02 - 11:46 AM (#683749) Subject: RE: BS: MS support for and from Mudcatters From: Art Thieme Just yesterday the local MS Society out of Peoria and members of the LaSalle-Peru MS support group loaned me, pretty much permanently, a new electric scooter to replace the twenty year old one I've used for the last 5 years to get a few CDs to the post office---to get me to the library and generally around. (I can walk about a block---but getting home again is the tough one.) This new scooter can even climb the curb ramps without going over backwards and tossing me in the gutter or in a puddle. To all who made this possible: THANK YOU!! Art Thieme |
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05 Apr 02 - 12:16 PM (#683773) Subject: RE: BS: MS support for and from Mudcatters From: GUEST,maryrrf Don't worry, you'll soon get used to doing injections. One of my sons is a severe hemophiliac and I had to start injecting him intravenously at the age of two! It was hard for a while until he came to accept it and stopped struggling. At around 10 he started giving himself his infusions and it has now become routine - he's 20. And hitting a vein is pretty hard - much more difficult than just an intramuscular injection. That part of it will soon be a piece of cake. |
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05 Apr 02 - 02:10 PM (#683875) Subject: RE: BS: MS support for and from Mudcatters From: Mary in Kentucky I used to tell myself, "If a junkie can hit the vein, surely I can stick a tiny half inch needle in my fat!" I've now done it almost one thousand times! (I learned just last Fall that a vigorous 5 minute massage of the area prior to injection reduces the hardness and bruising considerably. Also, room temp. meds, a large needle for dilution (reduces bubbles), a dry needle, ice packs...all help too) My Betaseron is in the fat, not muscle, and a perfect 90 degree angle helps too.) |
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05 Apr 02 - 08:22 PM (#684155) Subject: RE: BS: MS support for and from Mudcatters From: Dharmabum |
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20 Apr 02 - 12:09 PM (#694380) Subject: RE: BS: MS support for and from Mudcatters From: Amos Wow!! Robert and Amy -- you guys are amazing!! Cheers and hurrahs! We're rootin' for your team!! Love, A |