Organic Biscuit

Get Involved : National MS Society

noreply@blogger.com (OrganicBiscuit) — Sun, 05 Feb 2012 18:04:00 +0000

Get Involved : National MS Society Activism alert: Please ask your congresspersons to support extension/inclusion of Medicare legislation for those with MS!

Anderson Area Taking Strides Team Forming for WalkMS 2012

noreply@blogger.com (OrganicBiscuit) — Fri, 13 Jan 2012 08:43:00 +0000

The Anderson Area Taking Strides team is once again participating in WalkMS! The event is Saturday, April 14, 2012 at Worthen Arena on the Ball State campus in Muncie. Check starts at 8 am, and the walk will get underway at 9 am. Look for additional details soon!

Stu's MS Radio Joins BlogtalkRadio

noreply@blogger.com (OrganicBiscuit) — Sat, 30 Jul 2011 13:25:00 +0000

My friend Stuart Schlossman beat me to the punch on this one...He has developed an internet-based "radio" program for MS patients. Called Stu's MS Radio, it can be found at www.stusmsradio.com. He and co-host Deanna Kirkpatrick both have MS, and are sharing their unique talents and abilities in order to bring the latest information on multiple sclerosis to the masses. You can get there now by clicking the box in the right side-bar. (And I am still developing my show, stay tuned). You may also reach his site by clicking the title of this article.

Common Purse: Express Lane to Philanthropy?

noreply@blogger.com (OrganicBiscuit) — Fri, 07 Jan 2011 05:10:00 +0000

My massage therapist and friend Debra Robinson has recently founded a non-profit public charity (501 (c) 3 ) called Common Purse which operates a little differently- users of her website can post charitable projects online, and interested parties who are looking to be philanthropic can be matched with those projects.

While it is a probably a bit premature for an announcement, I just can't help myself. I think this is a fantastic idea and wanted to give her a shout out for the great work. The 501 (c) 3 is already established, and the website is started, with work ongoing. You may check out Common Purse by clicking the title of this post or by vising the link on the right hand sidebar.

MS Walk 2011 to be Held at Worthen Arena

noreply@blogger.com (OrganicBiscuit) — Thu, 06 Jan 2011 22:47:00 +0000

The East Central Indiana chapter of the National MS Society will be holding their WalkMS event on April 16, 2011 at Worthen Arena on the Ball State Universtiy Campus. I don't have the information on the time yet, but I would imagine it would start about 9 am? I will post more definite information when I have it. Mark your calendars if you are planning on attending. We would love to have all of you walk with us! To donate to the walkers, you may click the title of this post to go to a secure NMSS web form. Thank you to all who support our efforts. Worthen Arena is a very nice venue for the event, enabling all who walk whether with cane or wheel chair, or scooter to participate in a climate controlled indoor environment, rain or shine. Hope to see you there!

For Locals: National MS Society Self-help Group Meeting

noreply@blogger.com (OrganicBiscuit) — Wed, 05 Jan 2011 03:44:00 +0000

For those affected with MS who live locally, the National MS Society sponsors a self-help support group meeting monthly which I most often attend, and we would love to see some new faces in the group. Patients, family, and care-givers are welcome to attend.

Upcoming Dates and programs:

January 20, 2011 2010/2011 North American Education Program Presentation

February 17, 2011 Heather Donegan, Indiana NMSS

March 17, 2011 Heidi Dee, BS, & Ruth Eichacker- Allsup, Inc.

Meetings are held at St. John's Medical Center, Bennett Rehab Dining Room, 2nd floor, 2015 Jackson Street, Anderson, Indiana. Meeting starts at 7 pm, and lasts 1 hour.

Jan 20: 2010-2011 North American Education Program topic: This year's NAEP program is a research program, with the topic being the etiology (causes) of multiple sclerosis. Program booklets and the DVD presentation will highlight specific studies in the areas of the causes of multiple sclerosis such as immunologic, environmental, infectious and genetic as well as examining the possible link between chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis.

February 17: Heather Donegan, Programs & Services Manager from the Indiana State Chapter of the National MS Society, will be our guest. Topics: MS Awareness Week (March), MS Walk (April), and information on programs offered by the Indiana State Chapter. Presentation and Q&A.

March 17: Heidi Dee, BS, Community Based Representative and Ruth Eichacker, Account Specialist from Allsup will be our guests. Allsup (www.allsup.com) is the leading nationwide provider of Social Security disability and Medicare benefit services. According to their literature, Allsup has a 98% award rate for clients they represent throughout the entire SSDI process.

All are welcome to attend. For further information or questions you may contact me at fallcreekfun@gmail.com

Happy New Year Everyone!

noreply@blogger.com (OrganicBiscuit) — Sun, 02 Jan 2011 16:11:00 +0000

I had hoped to be posting several items starting today, but unfortunately fate has decided otherwise- I will instead be dealing with an electrical problem at my home. Long story short: One of my outlets blew out, and when I went to replace it I found that the insulation on the outlet had burned completely off the wires, and I suspect it will be that way all the way to the electrical box.

The outlet in question was wired in series, so once I started working some other stuff quit working...namely, my furnace. Now I don't know if that's a separate problem yet, or if it's the same problem I've been having for awhile, but it doesn't really matter at the moment- no heat in 17 degree overnights is still NO HEAT. Oy!

I was trying to get my house clean after the holidays and was looking forward to working on some projects. Instead I will be spending yet more money I do not have to fix this mess. I hope it's not a harbinger of 2011, as I was very motivated for the new year.

NMSS Support Group Reminder-for locals

noreply@blogger.com (OrganicBiscuit) — Tue, 07 Dec 2010 13:41:00 +0000

Just a reminder there is no support group meeting this month. Hoping everyone has a safe and happy holiday season! I'll have to dig out my notice for January's meeting and post it soon. Susan will not be there, but Sharon and Kristina will be facilitating. We will soon be planning the MS Walk!

Registry to be Acted On in the Lame-Duck Session?

noreply@blogger.com (OrganicBiscuit) — Sun, 07 Nov 2010 05:00:00 +0000

Just got a letter from the NMSS about the Registry Act (I think it's called the National Neurological Diseases Registry Act or something similar now). According to the letter the Senate will be back for the lame-duck session very soon, and help is needed for make sure we have a favorable outcome.

The house already passed the companion bill earlier this year, so with your help this can be a success! Please take a fiew minutes to visit the http://www.nationalmssociety.org and click on Get Involved, then scroll down to Activism to make your voice heard.

CCSVI, you and me: An Opinion Statement

noreply@blogger.com (OrganicBiscuit) — Tue, 26 Oct 2010 04:37:00 +0000

CCSVI is all the rage it seems on the "MS circuit"...or is it? Surely by now most people with MS have heard about Dr. Zamboni's research into a condition he calls CCSVI- Chronic Cerebro-spinal Insufficiency. The short version (very short) for my non-MS friends is that the veins that drain the blood away from the head are blocked and/or partially collapsed in MS patients, resulting in restricted flow. This also causes backflow of blood into the brain and spinal cord, and along with it a toxic buildup of iron.

Because of various factors, a procedure to correct this condition has not actually been approved here in the US, except for trial studies. I'm pretty sure phase two of the Buffalo trials is underway. In many, if not most, MS patients that have been studied so far there has been a stenosis of the internal jugular veins on one or both sides of the head/neck. In many, there are other veins affected as well, most particularly the azygos vein.

Many MS patients, desperate to be relieved of their distress, haven't waited for the outcomes of studies or approval before having corrective procedures done- often opting to go to a foreign country to have the balloon angioplasty .Granted, the info coming back does seem promising, and some of the videos I have seen seem quite compelling. But is it safe?

The MS organizations haven't to my knowledge released a statement regarding CCSVI, though they have some info on their websites. The neurologists who are currently treating MS patients potentially stand to lose out if this turns out to be a viable treatment option, as it will shift treatment from Neurological drugs to slow the progression to a teatment of the underlying stenosis, usually done by an interventional radiologist.

I have been in close contact with several MS pateints who are on the CCSVI bandwagon, and even have spoken with some who have had the procedure (a ballon angioplasty on the affected veins, sometimes with stent). I wish them luck, and pray for their recovery. It is my understanding that procedures are now being done in some instances in the US, but under what protocols I have no idea. I am hoping the early results will lead to a much quicker pace and open this up to more patients.

In the meantime, because I have MS, and know just how wretched it can be, I can only say be safe out there, look at your options, do what is best for you. Let's all hope this is the miracle that so many have waited for.

National MS Society Support Group Meets Thursday

noreply@blogger.com (OrganicBiscuit) — Tue, 19 Oct 2010 07:04:00 +0000

The Anderson-area National MS Society self-help support group will meet this Thursday, October 21, 2010 at 7pm in the Bennett Rehab dining room at St. John's Hospital. Those living with MS and their caregivers are welcome.

This is a self-help group with news, discussions and occasional speakers on topics of interest to the MS community. Hope to see you there!

Tea-time at the Ranch

noreply@blogger.com (OrganicBiscuit) — Sun, 17 Oct 2010 21:33:00 +0000

The Tea Party movement is mad as a March Hare if they think they are going to get the kind of change most members want by voting Tea Party this November. That is, unless solidifying the corporate control over our used-to-be democracy is the goal.

I have watched intently this movement with fascination and dismay as these tea-party types rail on one hand against the Bush corporate bailouts, while simultaneously pushing a free-trade agenda (can you say one-world government?). That they don't see the illogical inconsistencies in these positions seems to be lost on them.

The tea party may possibly win a few seats this year, and it remains to be seen if they will make a difference in the control of the congress. But the fact remains that this is a government of the people, by the people, and for the people- a fact the tea-partiers I know seem to crow at every turn (as if their corporate agenda is exactly this). It is not. Of the PEOPLE means people, not corporations. The supreme court of the United States made yet another grievous error in the Citizens United case by opening the floodgates to unlimited corporate funding into our elections. I can think of no quicker way to lose our democracy than this. The only thing I see coming out of their movement is chaos and further harm to our country. Apparently this is ok with them, just as long as we stop the Obama agenda of tightening our oversight of Wall Street, big corporations, and the like. Because we all know that that the big corporations know better than we do how to handle a Wall-Street meltdown or a Big Oil spill. Just ask them, they will tell you.

One can only hope these Tea-Party types come to their senses before election time, though that is doubtful. They are so riled up about having to actually pay taxes to support roads and bridges they are beside themselves- (and they pretty much will be after we quit paying for roads and bridges). They are so riled up about being forced to do the right thing by making sure they have insurance coverage that they forgot that it was their idea in 1993. What they don't do is acknowledge their hipocricy. They don't acknowledge that their own ideas are all over the map. Really, they don't acknowledge anything but whatever the latest meme-of-the-day is.

I, of course, will be watching this play out on the TV and reading the political stuff as always, and sipping a glass of lemonade. And if, by some unholy event, the Tea Pary gains traction I'm fully ready to mix up some tea and invite my Democratic friends over to discuss a counter party to level the playing field.

Oh, and a final word of advice for my divisive friends: If Glenn Beck, that modern-day genius and philosopher, offers you any Kool-Aid, I would highly advise you to pass on it.

Breaking News: National Registry bill passes House

noreply@blogger.com (OrganicBiscuit) — Wed, 29 Sep 2010 20:07:00 +0000

Per an email I just received from that National Multiple Sclerosis Society, HR1362 has passed in the House of Representatives. It's not over yet, though...we still have to get the Senate to act. The Senate is supposed to take up their version of the bill soon...Stay tuned for details!

MS Activism: Stand Up and Be Counted!

noreply@blogger.com (OrganicBiscuit) — Tue, 28 Sep 2010 03:13:00 +0000

The national registry may be alive! We may be able to finally be counted! The email I just received from the National MS Society's activism team is asking the MS community to write their congress-person and urge the passage of H.R. 1362,the National Neurological Diseases Surveillance System Act, which will take a count of those with MS and other neurological diseases.

To my mind this would be a great first-step, long overdue, and it may shed some real light on MS and those afflicted. I believe when the numbers start coming in there will be a renewed sense of urgency to helping the MS community.

I just emailed my congressman (Mike Pence,R.,Indiana). It was easy to do, right from the National MS Society's website. I urge everyone to take a few minutes to do this, as this bill is currently being worked this session!

Click the title of this posting above.

Good Things in Life Take a Long Time

noreply@blogger.com (OrganicBiscuit) — Wed, 15 Sep 2010 04:29:00 +0000

A lot of good has happened overall this past 18 months, despite the difficulties of MS. I put forth a tremendous amount of effort that, at times, I felt I didn't have, in order to "push through" obstacles and impasses, both real and perceived. Whether it was adjusting to medications, or physical therapy, or even dealing with some of the cognitive and interpersonal relations challenges due to the disease I have met each one head-on. Sometimes it was more like a head-on crash, but I got though each and every instance no apparent worse for the wear.

The result is, 15 months after finally being diagnosed and starting treatment I am "settling in" to my MS. I have learned to pace myself. I have learned to work within routines (helps with my short-term memory challenges). I have learned to better organize myself and my things so that I can find them but also not forget that I have them. And definitely sticky-notes are my friend.

I have changed multiple things so far about my diet, a process that is ongoing. Working with voc rehab continues. I don't know what cases MS, no one does. I don't actually know whether the medicines are helping or not. No one does. But this much I do know: I'm not going down without a fight, and as long as I draw breath I'll keep searching.

Anderson/Madison County National MS Society Self-Help Support Group Meeting September 16

noreply@blogger.com (OrganicBiscuit) — Tue, 07 Sep 2010 20:45:00 +0000

The Anderson/Madison County National MS Society's self-help support group will meet this month on Thursday, September 16, 2010 at 7pm in the Bennett Rehab dining room at St. John's.

We welcome all who are affected by MS, whether you are a patient, or caregiver, or loved one. This group meets monthly on the third Thursday of each month at this location. We often have a guest speaker, and this month is no exception (although I don't know who is speaking).

We allow a discussion either before or during our meeting as well, and it's a good chance to learn and share with others who are living with MS. Please come join us!

More Thank You's

noreply@blogger.com (OrganicBiscuit) — Sun, 15 Aug 2010 00:08:00 +0000

Thanks to Betty and Ron, Brent and Pari Ann, Maryann, Stuart, Danielle, Cindy, Barb, Randy, Todd, Yvonne, Crystal, Dustin, Lora, Kim, Dana, Frank, Vic and all of my friends for all of the support you have lent me, in so many ways. I knew if I started this it would be a challenge to remember to thank everyone, but I am very grateful to all (whether I remember or not).

This Video Says It All-Can You Relate?

noreply@blogger.com (OrganicBiscuit) — Fri, 13 Aug 2010 21:21:00 +0000

I saw a powerful video earlier today, made by someone living with MS, which describes in pictures and words what MS is like. I encourage you to watch this. If you are living with MS, you surely can relate to it. If you don't have MS this is what we are trying to describe to you- in almost EXACTLY the same words I have used so often. This is what I was grousing about in my post the other day when I joked about "Shut your piehole". The only thing I would add to this, if I were to make one, is about the flu-like symptoms caused by the injections I am on. Can you imagine having the flu for over a year? My temps are up and down 4-5 degrees daily.

Thank you!

noreply@blogger.com (OrganicBiscuit) — Fri, 13 Aug 2010 00:29:00 +0000

I hate doing thank you's, only because I am sure to leave someone out. But here goes: Thanks Rob, Tracey, Rosemarie, Rob, Ralph, Dad, Clint, Mom, Lisa, Ann, Kirk, Maryann, Jim, Michael, Danielle, Pam, Kristy, Marylou, Uncle Mike, Uncle Carl, Aunt Teresa, all my friends, online and offline for all the kindness and support. It is truly appreciated! I am anxious to get the next chapter underway.

Learning to Live Again: One Year after MS

noreply@blogger.com (OrganicBiscuit) — Thu, 12 Aug 2010 08:35:00 +0000

June 6, 2010 marked one year since I was diagnosed, and July 1, 2010 was the one-year anniversary of my being on Betaseron injections. What a whirlwind year it was, not only for myself, but for my family and friends as well.

If I was going to write a book about it (and I just might), it would be titled "How to Survive MS Without Losing Your Mind". That one would be for those living with MS. The one I would write for friends and family of MS'ers would be titled "You Have No F-ing Clue What You Are Talking About, So Shut Your Piehole". I say that in jest, I would not do such a thing. (I might think it, but never do it). I only say that because of the incredibly insensitive, uninformed just plain ignorant things people have said to me over the past year, most of which many MS'ers can totally relate to and which the blissfully unaware should thank God they are so clueless.

I love all of my family and friends, so don't worry- it's not YOU I'm referring to, it's those other people. :) Really, I'm truly just kidding. I do still have my sense of humor.

I have had to literally re-train my brain to do things (like think and remember). I have had to go through physical therapy. I am going through occupational therapy and in the process of starting vocational rehabilitation. I have had to fight with a completely broken medical-insdustrial complex to get my meds ($30,000 + annually just for the injections), I have had to endure multiple episodes related to the MS. I may not exactly be winning (though I just might be), but I dang sure ain't losing!

This year has been about learning to live again, so I present the Foo Fighters, Times Like These.

Angel Food Ministries Offers Online Ordering with Local Pick-up, Everyone Qualifies

noreply@blogger.com (OrganicBiscuit) — Wed, 11 Aug 2010 04:52:00 +0000

My sister shared this with me. I haven't ordered from them yet, but it looks very tempting. $29 for the Signature box, delivered to a local pantry for pick-up. I really was more tempted to try one of the specials, which vary from month to month (as does the food). I like that they offer online ordering, and everyone qualifies- no forms to fill out, no income guidelines. Just shop and order. Check them out by clicking on the title of this post.

Breathe (Acoustic Version) by Anna Nalick

noreply@blogger.com (OrganicBiscuit) — Mon, 09 Aug 2010 04:01:00 +0000

I like this one also.

CCSVI: Pipe Dream or Time to Clean the Pipes?

noreply@blogger.com (OrganicBiscuit) — Sun, 08 Aug 2010 05:00:00 +0000

A lot has been written lately about what has become known as the "Liberation" treatment for MS patients. Ostensibly to correct a condition known as CCSVI (cerebrospinal venous insufficiency, the liberation treatment involves vascular surgery to either insert a stent or else use a balloon to open veins in the neck and brain (and sometimes chest) that are malformed or blocked. The thinking of the doctor who pioneered this treatment, Dr. Pablo Zamboni, is that some of the veins in the areas mentioned are not allowing the blood to properly drain away from the brain and spinal cord. His theory is that this results in the accumulation of waste, and particularly iron, in the central nervous system. This accumulation then leads to the demylenation that is MS.

This theory is controversial in the both the MS and medical communities. Dr. Zamboni did not have a control group in his study, so it technically is of little scientific value. But he did have some intriguing findings nonetheless, and doctors around the world are on the case.

Phase 1 trials have now been completed in the US, and phase II is underway. You can find out more about this, known widely now as the "Bufalo Studies" in the latest edition of Neurology Now or by clicking the title of this post to read more online.

The liberation treatment is not available in the US or Canada at this time, though both countries are actively researching it. Many of my MS friends have either already had this done by going overseas, or are planning to and raising funds for the CCSVI treatment. I will be waiting and watching. I pray for all. I understand how desperate the situation is for so many.

What Color is MY Parachute?

noreply@blogger.com (OrganicBiscuit) — Fri, 06 Aug 2010 06:45:00 +0000

I had my long-awaited appointment with Vocational Rehabilitation this week. I am thrilled that they have accepted my case. We reviewed the results of my intake testing, and set another appointment several weeks out. I am supposed to look at a couple of websites they gave me to look at schooling/training options. I am very excited!

Fear and Loathing in the Heartland

noreply@blogger.com (OrganicBiscuit) — Fri, 30 Jul 2010 20:59:00 +0000

Everything that the United States ever was or ever could hope to become lies in the American people. Then along came deregulation, outsourcing, offshoring, multi-national corporations, corrupt politicians, lying, thievery, ponzi schemes etc.

Those things have always been part of America, I guess, but I always thought that good would win out. Now I'm not so sure. The current melt-down of the economy, which started in Dec. 2007 and wasn't officially recognized until after the Wall St. meltdown interrupted John McCain's presidential campaign in the fall of 2008, is just one result.

Another is that we are losing our country. I will always stand on the side of the hard-working men and women of the American labor force. They are what built this country. They are also the ones who built every last red cent that the Investor class ever made off of them. They are also the ones who fought for every sensible regulation that was ever passed to protect themselves in their workplaces. They are also the ones who allowed entire generations past to enjoy the standard of living which we did before it started being systematically dismantled right before our eyes.

I also believe in freedom. I believe that we are (or at least were) free men and women. We are free to start a business. We are free to go to work for someone else at their business if they want us. We are free to sit on our duffs and do nothing if we can afford to. We are also have the freedom to freely associate with whomever we choose and to form associations with a common purpose.

I cherish all of the freedoms that this country has, and stands for. I'll be glsd if I ever see the day that fear quits ruling here. I would be very happy to live long enough to see opportunity and prosperity return to our great nation. A robust economy, not just for a few, but with a thriving middle class it vital. Trade policies which gut the working class and porous borders which allow the illegal immigrants do exactly the opposite. It's been going on since at least the arly 70's, under both Democrat and Republican administrations. In fact, Bill Clinton, whom I think is a good man, was the best Republican president in a long time, having bought into the Newt-Gingrich-Republican-led NAFTA debacle. How's NAFTA look now?

If we don't start creating good paying jobs and growing this economy aggressively we will never be able to face potential looming threats in the world (think China for example). I am afraid we have already squandered a limited opportunity to avoid further destruction in our economy.

I am suggesting an FDR and Eisenhower style infrastructure program to replace crumbling roads and bridges, and maybe some high-speed rail investments to limp us into a position while improvements are made to the energy sector.

Even if all of this was done, it still won't replace what has already been lost however. We need a strong effort to revitalize our manufacturing sector. It will be a heavy lift, and I don't think the right people are in place to make it happen. Time will tell. I am not hopeful.