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Four Fantasy Novel Writers
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Writers writing about writing.
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Heaven Only Knows Posted by: vbeachy
Video duration: 225 seconds Another tribute to my lovely wife, Melinda, Heaven only knows when I will be with you again. Related: beachy, emmylou, harris, melinda, suicide Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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The Letter Posted by: vbeachy
Video duration: 364 seconds This song by Robert Plant and Alison Krauss prompted me to compose this latest tribute to Melinda, who passed away on June 2nd, 2006. It is significant to me because I am currently writing a memoir that is written in the form of a letter to Melinda. Related: alison, beachy, krauss, melinda, plant, robert, suicide Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri Infusion #22 Posted by: vbeachy
Video duration: 220 seconds Update on my continuing recovery from the new MS drug Tysabri Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri - walking problem Posted by: vbeachy
Video duration: 178 seconds I am reluctant to post this because I have been doing SO well on Tysabri, but it's not all rosy, as you can see. Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri and PML Posted by: vbeachy
Video duration: 192 seconds 2 new cases of the often fatal brain disease called PML are now reported in Europe. Does THAT concern me? Nah... Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Led Zeppelin - Good Times Bad Times Posted by: vbeachy
Video duration: 175 seconds I put this picture movie together to mark the reunion gig of the best rock band ever. Related: bad, good, led, times, zeppelin Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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What Tysabri has done for me Posted by: vbeachy
Video duration: 212 seconds I am a huge Tysabri advocate Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri Infusion #21 Posted by: vbeachy
Video duration: 190 seconds Continuing recovery with the new MS drug Tysabri Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri - MUCH BETTER Posted by: vbeachy
Video duration: 142 seconds I am doing much better than my previous video update Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Balance and Multiple Sclerosis Posted by: vbeachy
Video duration: 121 seconds I can now ride a motorcycle again. I lost the ability to balance shortly after I was diagnosed with MS and had to give up cycle riding. I'm back albeit a little shaky, but I can drive it and keep it upright. Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Chickentown Posted by: vbeachy
Video duration: 152 seconds Stuff Related: beachy, chickentown, clarke, cooper, john, vern Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri Infusion #24 Posted by: vbeachy
Video duration: 146 seconds Two years on the MS drug Tysabri Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri - What's next? Posted by: vbeachy
Video duration: 127 seconds Continuing recovery by the MS drug Tysabri Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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The ugly side of shingles Posted by: vbeachy
Video duration: 207 seconds Shingles, going on week 2 Related: beachy, shingles Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Here I Am Posted by: vbeachy
Video duration: 267 seconds Missing you, Melinda. Mary Chapin Carpenter provides the wonderful music Related: beachy, carpenter, chapin, mary, melinda Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Rockabye Melinda Posted by: vbeachy
Video duration: 340 seconds "Everything is going to be alright" Music from Shawn Mullins Related: beachy, melinda, mullins, shawn, vern Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Tysabri Infusion #25 (should've been) Posted by: vbeachy
Video duration: 139 seconds I was due to have my 25th infusion on October 3rd but my Neurologist wants to examine me before I get clearance to take the drug. He is concerned about my recent walking problems Related: beachy, multiple, sclerosis, tysabri Display Video Comments | Hide Video Comments | Add Comment Latest comments made on this video:
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Latest comments made on this video:
By: astronautsandwitch. on 26 Oct 08, 21:34:03
the decision to go on to on Tyis a personal one I was one of the first persons who got scared and dropped out after two months I went back on the drug! I figured 18000 have taken it for at least a year, 35500 currently taking it, 48000 have taken it at least once since it was introduced in clinical trials and we have seen 5 with PML! I think the risk is very very low! however the risk of MS progression to me is a reality! decision is yours! I had MS since 95 as well
By: vbeachy. on 21 Sep 08, 20:53:54
Hi Mody...thanks for your email. Because Tysabri has been a wonderful drug for me I don't worry at all about PML. I no longer use a wheelchair or crutches and walking again is SO LIBERATING! Go for it!
By: medad1. on 21 Sep 08, 19:36:59
Hi Vern ; Im a multiple sclerosis patient since 1995, and recently I was diagnosed as ?Secondary Progressive Im a handicapped and I use the wheelchair all the ?time.my Doctor has prescribed the Tysabri for me but Im really afraid to take ?because of the side effects especially the PML? What can I do?? Regards Mody
By: vbeachy. on 23 Aug 08, 19:29:23
Laurie; So sorry to hear about your doctors cautious approach. But, in my opinion, it is not good when a MS patient feels like their doctor cut the legs from under them. I am just a layman, but I would say to get another doctor. Tysabri has improved my life 1000%!
By: fiddler927. on 23 Aug 08, 19:25:35
My doctor was going to prescribe Tysabri for me; even had me fill out the paperwork, but she decided not to do it because of the new cases of PML. Needless to say, I am SO disappointed, and very frustrated. I know she's being cautious, but I feel as though I have had my legs cut out from under me.
By: vbeachy. on 18 Aug 08, 17:09:39
Thanks Rich!
By: vbeachy. on 18 Aug 08, 17:08:55
Yeah, Gary, quality of life is a big thing for me (and other MS'ers too).
By: Westenhizzel. on 18 Aug 08, 03:56:55
I see what it has done for you and where you were before Ty. Even MS people have a hard time understanding this if they have exacerbations every 6-9 months. I have heard some of these folks claiming that what really pisses them off is that they can only play tennis for about an hour now. These were people in my support group who saw me getting around with my hotrod walker. As you know completely is that it is a matter of life quality.
By: d21rich. on 17 Aug 08, 22:37:02
Getting PML is so unlikely. You are more likely to be killed by getting hit on the head by a turtle dropped by an eagle flying overhead. Good luck, keep on keeping on. Rich (UK)
By: vbeachy. on 15 Aug 08, 14:04:06
Thank you!. :)
By: jermeal385. on 15 Aug 08, 03:33:14
lol wish u the best love ya sence of humor
By: vbeachy. on 10 Aug 08, 19:16:35
I understand your concern and I don't think ANYONE can fault you for doing that. I had my 23rd infusion on Friday and next month I will have been on Tysabri for 2 years. I am sticking with it because of what Tysabri has done for me.
By: astronautsandwitch. on 10 Aug 08, 18:57:15
Hi guys, my 18th Tysabri would have been at the end of the month, but i already got a prescription for Copaxone and LDN. I m set to start that in mid September, as soon as tysabri wears off and is out of my body. I am not sure if this is the right decision, but i am affraid of PML. i m not affraid of dying. but i m affraid cuz pml is 10 times MS. any thoughts guys?
By: TulsaLaniB. on 07 Aug 08, 04:39:51
I'll talk a little & then quit! I'm watching your progress, & I too am seeking something to make me "feel good" again. The weirdest thing about MY situation, is before I went into menopause, I use to "feel good" during the yukky 5 or 6 days. Those days are gone & I no longer get days of relief. I will have to say Vern that your challenges have been many, & I understand about MS not being your biggest sadness. I get it. My hubby is very supportive, I don't know how well I'd do w/o him. Stay :-)'n
By: TulsaLaniB. on 07 Aug 08, 04:20:45
Well, I don't know which one of your videos to post on, so I'll just jump in on this one and start talkin'. I won the MS lottery in '98, the Neuro gave me a choice and I did nothing till Nov '99 when I had a REALLY bad episode. So then I did Avonex, till 2003 & now I'm on Copaxone. I'm seriously considering the Ty, w/ see my DR the 20th. The PML doesn't scare me as much as 10 years from now. I've started having bad problems '03. I use my scooter for long distance. I am a fighter, so gloves off.
By: vbeachy. on 07 Aug 08, 00:10:59
I hope I am completely right in my view of getting PML with Tysabri.
By: vbeachy. on 06 Aug 08, 21:08:38
If there is anything else I can do...please let me know! Vern Beachy
By: mlyons218. on 06 Aug 08, 16:49:26
Thank you for posting this update. My husband has MS and we discovered your videos about a month ago right before his first Tysabri infusion. I have to admit this news has me worried but the overall medication has me worried for him (i'm a worrier). I needed to hear your reaction to the news. Thank you for easing my fears somewhat.
By: vbeachy. on 03 Aug 08, 22:41:59
I don't think there is anything you missed. I am planning to take Option 2 and my 23rd infusion is scheduled for Friday, August 9th.
By: astronautsandwitch. on 03 Aug 08, 22:36:19
My friends! the fear of PML may be overblown but I think if u get it it is still bad,the options for me now as i see them are: 1-stop 2-continue 3-pause,wait & see for 3 to 4 months 4-Switch to copaxone+ LDN 5 stop and do nothing! 6 enroll in a trial is there anything i missed? please help m33
By: bvaleriea. on 03 Aug 08, 05:40:57
Ah I wish I had the courage to say PML is a non-issue. For me it is a very scarey issue. But then we all have to do what we feel is best for our own body and mind eh?
By: vbeachy. on 02 Aug 08, 18:00:39
Thanks! It wasn't that long ago when PML was considered always fatal.
By: Fixer13605. on 02 Aug 08, 17:24:02
Great commentary! The only thing I could add is PML IS NOW TREATABLE! A plasma exchange can be initiated to treat the patient, which is why the two recent cases are overblown. PML is no longer a mandatory death sentence, all drugs can have reactions, just not in everyone, I feel bad for those that had a reaction, because they are forced off the best form of treatment, but the fear of PML since it is now DIAGNOSABLE AND TREATABLE is IMO overblown. Glad to see that you're doing well!
By: astronautsandwitch. on 02 Aug 08, 07:40:20
good for you u don't have to travel to get your Tysabri. I just had my 17th infusion a week ago. I am scared and for me I think I will probably pause for 3 to six month and wait and see. I think I am more stable on Tysabri but may be copaxone will do the trick again. I was on Copxone for 5 years and somewhat did work little until my MS got aggressive.Honestly I m confused. I don't know what I will do but I have 3weeks to decide! Good luck to you! Any advice?
By: vbeachy. on 01 Aug 08, 20:24:18
Ha! Thanks Daniel!