NMSS Support Group Reminder-for locals

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?

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

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

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

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

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!

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

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

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

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?

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!

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

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

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

I like this one also.

CCSVI: Pipe Dream or Time to Clean the Pipes?

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?

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

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.

New Facebook Group: My Organic Biscuit

I have started a new Facebook discussion group for my MS friends. I'm not exactly a technical genius, but I think you can click the title of this posting to go there (that's the idea anyway). If not I'll be back to correct at soon as possible. Hope to see you there!

Anderson Area Takin' Strides raises nearly $1000 for National Multiple Sclerosis Society

Sorry I didn't post this sooner, everyone. The Anderson Area Takin' Strides team raised nearly $1000 for the National Multiple Sclerosis Society at the East Central Indiana MS Walk at Ball State University. It was the most ever for our humble group! Look for bigger things next year.

It was nice to be walking indoors at Worthen Auditorium, out of potential weather and heat. There were many teams from all over the area at the walk.

A Day in The Life, A Year of Days

It has been just over one year since I was diagnosed with MS, and a lot has happened in that year. From Physical Therapy to immuno-modulators, dietary changes to vitamins and supplements it has been an interesting ride.

I call it a ride because that is literally what it feels like. The MS has affected the right side of my body, leaving me with numbness and tingling, an unsteady gait at best, heat sensitivity and more.

I am thrilled though at being diagnosed, not an uncommon feeling for those afflicted the multiple sclerosis. Like so many who have told a similar tale, the road to diagnosis was a rocky one to say the least. I am not a doctor, nor a scientist, but my own personal experience leaves me one conclusion: MS is severely under-diagnosed.

Perhaps this wouldn't be the case if there was a national registry in place to begin tracking cases of multiple sclerosis. I understand there have been efforts in congress to get such registry in place. The last mention I can find of this is H.R. 1362 from 2009, the National MS and Parkinson's Disease Registry Act. The bill was referred to the House Committee on Energy and Commerce, where it will presumably languish, if not for any other reason than I expect this committee to have it's hands full of oil.

This will be one of the issues I focus my attention and efforts on going forward. Official estimates are always quoted at around 400,000 afflicted in the U.S. but I have also seen some unsubstantiated ramblings of up to two million. We of course won't know until such time a National Registry is establi shed. My personal experience is you can't throw a rock without hitting someone with MS, at least locally. Of course I live in a midwest town that was formerly heavy industrial (GM), so I also have to wonder about possible causes. There has, to date, been no cause of MS identified. There have, however, been a few "clusters" identified worldwide. I understand that there is an effort underway to at least get a count of MS patients locally, and I support this completely.

On edit: The National MS Society's position paper on the establishment of a Registry can be found at http://www.nationalmssociety.org/search-results/index.aspx?pageindex=0&pagesize=20&keywords=National+Registry&x=0&y=0

Walk MS Event April 17 at Ball State

I am participating in the Walk MS event on April 17 at Ball State University, as part of the Anderson Area Takin' Strides team. I would be thrilled to have additional walkers as a show of support, and any of my friends are encouraged to walk with me. I don't know the time yet, but I will post it later today. As part of the event I am soliciting pledges, which are used by the National MS Society to do all sorts of good things, including research funding as well as direct aid to MS patients for things like modifications to their cars or homes or other needs. Please, take a moment to show me some love on my first walk. I thank God every day I am still walking.

Greater Risk of Osteoporosis with Multiple Sclerosis

I have been aware of the benefits of Vitamin D on the course of MS for awhile now, but an article in the latest issue of Neurology Now discusses the increased risk of Osteoporosis as well. I am already taking Vitamin D and Calcium supplements, but may increase my dosage based on this article.

MS "Walking Pill" Approved

Ampyra (fampridine-SR) was FDA approved for all forms of MS on January 22. You can read more about it at the National Multiple Sclerosis Society's website. Click the headline of this post to go there.

MS Support Group Meeting Tonight

There is an MS Support Group meeting tonight, Thursday, February 18, 2010 at 7 pm. The location is the dining room at Bennett Rehab, inside St. John's. It is open to all.