Drunk on whine......

OK. I'm over it. Of course, I'm still waiting for Webster to bring me some Brie to go along with my whine! (Did you see the comment I left on your blog Webster?? LOL). As no Brie was available, I simply "whined" myself silly. Until 6:30 last night anyway. That's when hubby took me out to dinner for an early anniversary celebration. (Our first anniversary is the 5th). Hard to continue to whine with a hubby like mine taking me out for wine (not whine) and a fabulous meal. He keeps me sane. Still doesn't mean I like MS. Still doesn't mean I am remotely interested in being friends with my MS either. I still think MS sucks. I just have it back into perspective. Of course, often that perspective sucks too! I just wish the MS would leave me alone and go away. Permanently would be my preference, but I'll take temporary. I'd like to go one week and be able to lose my temper without worrying if being pissed off will cause an exacerbation. I'd like to spend the day outside in the sun, gardening, without worrying that the heat will cause an exacerbation. I'd like to be able to be able to WALK around the zoo all day and not worry about falling on my butt or have my husband worry that I'm over doing. O.K.....so maybe I'm NOT done whining yet.

MY day to whine......

This is exactly how I feel right now. Like I have too many balls in the air and I'm catching the ball with my toes. BARELY. Of course, my toes are MS toes and I'm not nearly that svelte. So I tend to drop the balls I'm trying to juggle! Most of the pressure I feel is self imposed out of frustration. I want to do more than I am and just don't have the stamina. The heart is willing but the body isn't. As a result I either do too much (just when I have the hang of imposing self limits for energy conservation) or get too frustrated, or more commonly, both. I still want to be all things to everyone knowing full well I can't. Heck, I couldn't before. (Seriously, who can)? However, I was able to get away with pushing myself harder. When I get feeling sorry for myself I try to focus on the fact that there ARE folks out there that have it worse. I'm not losing my home. I have a wonderful support group. I know things can be worse. BUT. Today, the hell with everyone else. (It's my blog. If I want to cuss I will). I'm tired of being clumsy, tired of BEING tired, tired of hurting (a whole different issue), tired of not hearing (another issue), tired of the chair, tired of being hungry (another issue). Add all those together with not being able to communicate well, stir, and voila. You have me. Pissy. Not a pretty sight. So, today I am embracing my frustration and allowing myself to BE pissy. I've earned it and I'm going to revel in it. I'm not going to watch the news to hear about anyone else's problem's. I don't want to hear anyone else whine about how tough they have it. Today is MY day to whine. Of course, I'm self actualized enough not to allow myself to allow others to bear the brunt of my royal pissiness (Is that a word? If not, it is now), and for that Mark is thankful! So let's see what else can I whine about? Nada. I do believe I have it covered.

Laquinimod Clinical Trial

The following information was forwarded to me from Kim at the Bakersfield MS Chapter:



Dear Friend of the Rocky Mountain MS Center,

We know that patients with multiple sclerosis (MS) want more options. So do we. Please help us get the word out about an investigational oral drug, laquinimod.

If you know someone who has confirmed relapsing-remitting MS (RRMS), is between the ages of 18 and 55, has never been treated with interferon medications (Avonex®, Betaseron® or Rebif®) and may have had at least one relapse in the last 12 months (or two relapses in the last 24 months), this Bravo study may be a good fit.

To see if there is a study site in your area, please visit https://www.TevaClinicalTrials.com/RockyMountainMSCenter.aspx. If there is a site in your area, please note the reference code RMMSC when contacting it. Trial coordinators are standing by to help determine eligibility.

Sincerely,

Karen Wenzel
Executive Director





Rocky Mountain Multiple Sclerosis Center
701 East Hampden Avenue, Suite 420
Englewood, Colorado 80113-2760

Spring has sprung!

Yeah...spring is here. I LOVE spring. The air is cool and the evenings still require a light jacket. Flowers are starting to bloom and my rose bushes have sprouted new leaves. My star gazing lilly's are poking from the ground and my day lilly's are up and have spread. (YEAH). Almost time to pick up some perennials and point to where I want them planted! LOL Because we live in the mountains of California where it snows (as it is as I type), I can't put anything in the ground until mid April. So it gives me plenty of time to decide what to plant. It also gives me a bit of time to decide on what cooling vest to buy. Yes, I am going to wear one this year during the summer when I'm out and about. I'm going to do everything I can to make sure I don't experience the exacerbation's like I did last summer. I know there are no guarantees, but at least it won't hurt and I don't want to have to stay indoors all summer. So, my research begins. I'll share what I discover.

MS and Dieting

There are lot's of things folks do to manage their weight and their health over all. Some of them are just plain nuts (like swallowing earthworms in the 1800's) not to mention dangerous (prolonged water fasts). Some exercise to extreme, some try alternative diets that are clearly not healthy (neither is extreme exercise). Some of us start the doctor recommended "Cut the calories and exercise" lifestyle change.The key is never to start an exercise program without consulting with your doctor. It's even more vital when you have MS or another health issues to deal with. For me, the number one exercise recommended is swimming. Unfortunately, I don't have a pool or live in a community that one is easily accessible. (I live pretty rural and the nearest "big city" is an hour away)and walking isn't an option right now. So, I have to come up with another alternative. Any suggestions???

A letter to my sister.......

My sister and I exchanged a few text messages yesterday. She will be 40 in June and has started the panic that most of us felt when we turned forty and realized we were middle aged. Wondering, "When did that happen, where did my youth go" and re-evaluating where we are in our lives. The 40's are great, and they ARE. Being middle aged isn't something to fear. It's something to embrace. First of all, your still HERE. Then there is the wisdom about life that you've acquired and don't even realize. I find I have a much lower "malarkey" (dad's word from when we were kids remember? When he would try NOT to cuss in front of us. It was used often when WE tried to pull a fast one. Mom/Dad would say we were full of malarkey),level than I did when I was younger. I suppose that's because when we're young we often don't recognize when someone is trying to pull a fast one until it's to late. Now, I can spot a BSer a mile away and I have zero tolerance for any BS. That came with hard earned experience. I also know when to keep my mouth shut. Even if it means biting my tongue until it bleeds. Wisdom is knowing that you can always say a word, but you can never take it back. Wisdom is also knowing that there are some hurts that "I'm sorry" can't heal. Wisdom is also knowing that the best legacy we leave, is our children and you have done a wonderful job raising your son. The hard way, as a single parent since he was a toddler. Look at him now, almost grown. In just a few short years he'll be done with high school and ready to fly on his own. Wisdom is knowing it's not the house, the car or any material thing that we have that is important. It's family. Wisdom is knowing that sometimes the best comfort you can give is simply sitting quietly and listening. Not only with your ears, but with your heart. You are far wiser than you give yourself credit for. Your ready for the next chapter in you life called "Middle Age" and remember you will always have me around to kick your butt when you screw it up! LOL

MS and what is.

I think I've got the hang of managing my activity level to save energy, so the fatigue is better. I'm also controlling my stress level better. Still, like everyone else,I have stress factors in my life that I can't control, but I've learned that I can't do anything about them. So, I refuse to allow the stress created by other folks' behavior effect me. Even though they may try their darnedest to upset me, or make me give up. I may have MS, but I'm still a fighter. It's just not in my nature to quit, no matter what curves life has thrown me. Life has thrown me some doozies in the last 4 years and actually MS is the one that LEAST effects my life believe it or not. MS is more of a big inconvenience. There are far worse things than MS. Of course, I can keep that mind set because of my faith and the tremendous support group I have. I look at MS as simply another obstacle to overcome. Is it hard at times? You bet. Have I ever wondered why me? Of course. Especially with the other issues I have to deal complicating my life and bringing on added stress. Which we all know is terrible for MS. Nothing like an episode of severe stress to set of an exacerbation. Which is why I've adopted the "What is, IS" mindset. I find my mind set helps keep my stress level lower and really helps me face any challenge. We all have our coping mechanisms and I've found a great one.

Genetics Studies and MS

This article can be found on the National Sclerosis Website along with numerous other research results.

Genetics Studies Yield New Clues to Why People Get MS

New studies are deciphering the complex picture of genetic characteristics that make people susceptible to MS, thanks to international collaborations and unique population studies. Each gives important new clues about why people get MS. Additional large-scale studies, the first stages of which are already underway, promise to uncover the great majority of genes that convey risk for MS, which would pave the way for understanding the basic cause of MS and developing more rational therapies.

CD58 Gene: When it completed the largest replicated whole genome scan (scan of all the genes in the body) for MS to date, the International MS Genetics Consortium (IMSGC) identified and validated variations in two genes that help regulate the immune system as clearly increasing genetic susceptibility to MS, and preliminarily identified several other genes of newly suspected importance in MS. Philip De Jager, MD, PhD (Brigham & Women’s Hospital, Boston) and colleagues in the IMSGC now report on one of these other genes, CD58, which instructs the activation of T cells, major players in the immune attack on the brain and spinal cord in MS. They studied this gene in 1530 additional people with MS, and found further evidence of its association with the disease. They pinpointed a specific marker, or segment of DNA, on the gene that is associated with reduced susceptibility to MS. They also showed that the level of CD58 expression (that is, the amount of CD58 protein that is produced from the CD58 gene) is associated with remissions from MS disease activity. Manipulating CD58 is a strategy used in treat other autoimmune diseases, so this study may open up new therapeutic options for people with MS. (Proceedings of the National Academy of Sciences U S A 2009 Feb 23 [Epub ahead of print])

KIF1B Gene: Yuri Aulchenko, PhD, Rogier Hintzen, MD, PhD (Erasmus MC University Medical Center, Rotterdam, Netherlands) and colleagues completed a genome-wide study of a unique group – 26 people with MS in the Netherlands who had a common ancestor – a fact unknown to them before the study! They found evidence of heightened risk of developing MS associated with a variant of the gene KIF1B, which is important in the function of nerve cells. The team then sought to confirm these findings in a sample of 2,634 people from the Netherlands, Sweden, and the Canadian Collaborative Project on Genetic Susceptibility to MS, and a group of 2,930 controls without MS. The results strengthened the conclusion that the KIF1B variant is associated with significantly higher risk for developing MS. Since this gene is related to nerve cell function, it may also eventually help to determine why people with MS develop the long-term disability that results from nerve cell damage. (Nature Genetics, advance online publication November 9, 2008)

HLA Genes: Stacy J. Caillier, BSc, Jorge Oksenberg, PhD (University of California, San Francisco) and colleagues have been collecting blood samples from a large number of families affected by MS, funded in part by the National MS Society, focusing on ethnic groups with lower MS susceptibility (e.g., African-Americans) and higher susceptibility (e.g., individuals of Northern European descent), and searching for commonalities and differences that may help pinpoint genes of importance in MS. Here they report an important new finding on HLA genes, which are involved in immune function and have long been associated with MS. The team tackled the problem of how to discern the roles of two different closely related HLA genes – HLA-DRB1 and HLA-DRB5 – by studying a dataset of 1635 African-Americans, including 769 people with MS. They found that HLA-DRB1 is associated with MS susceptibility even in the absence of HLA-DRB5, indicating that the former is the primary gene relating to susceptibility. People without HLA-DRB5 were at increased risk of developing secondary-progressive MS, however, so this gene may protect against disease progression. (The Journal of Immunology 2008 Oct 15;181(8):5473-80)

GPC5 Gene: This same team completed a genome-wide study of genetic variations in 978 people with MS and 883 controls without MS. One of their most compelling findings is a link between the GPC5 gene with MS risk. This gene is implicated in nerve fiber regeneration, and previous work by this team suggested that variations in the gene may also help determine a person’s response to interferon beta therapy. The team also found that genes relating to MS susceptibility were separate from those linked to disease course. (Sergio E. Baranzini, PhD, et al, Human Molecular Genetics 2009 Feb 15;18[4]:767-78)

“Each of these studies give us important new clues to why people get MS and even why it may progress,” said John Richert, MD, Executive Vice President of Research and Clinical Programs for the National MS Society. “Of the genes identified so far, some function within the immune system and some are related to nervous system function. There is increased excitement and opportunity to study the many genes related to susceptibility and severity of MS”, he added. “In fact, we’re currently raising funds for a new international, large-scale study, the first stages of which are underway, that promises to uncover most of the remaining genes that convey risk for MS. This would pave the way for understanding its root causes and for developing more rational therapies and even prevention.”

Spring improvement project....

I've been doing pretty well MS wise. I seem to be managing my stress better (which will help in more areas besides the MS). I've been feeling better and weathering all the non-MS pain I have. My back pain has been progressively worse over the past year. NO FUN. The back seems to be one area that when you hurt it, it never gets better. As if the MS hadn't limited my mobility enough! Right now is the perfect weather (here) for my MS. It's beautiful outside with a maximum high of the mid 60's. Cool enough to need a sweater, but warm enough to enjoy being outside again. I've made a promise to myself to be more active this year. Even in the chair. I'm going to make an effort to start wheeling around the block every day when the weather allows. Get a little exercise and fresh air, drop a little weight. I've been cooped up in the house for the majority of the last 10 months. (I fell May 18th). It's time to get out again. Of course, I can't simply hop in the car and visit folks. With my back I can't lift the chair and I don't have a modified vehicle. That's something we're starting to look into. It would be great. Well, that's my update. The new project this spring is ME. Wish me luck!

Nothing to.....type

I've had total writers block for the past few days. Every time I've attempted to blog the words wouldn't flow. I had nothing to say. No thoughts to share, no soap box to climb on. For me, as those who follow me know, that is a very rare occurrence. I've been so preoccupied with everything else going on in my life that, for a brief period of time, MS has not been the focus of my thoughts. Nothing changed. I still use the chair and my STS RX machine. I still wobble like a Weeble and my bladder, hands and legs still aren't working well. I still have the horrible spasticity (last night was rough in fact). Suddenly, none of it mattered. Not that anything terrible or momentous occurred in my life to distract me. It just didn't matter. It is what it is. It wasn't worth commenting on. I kept up on the blogs I follow and still, I had nothing to say. Amazing isn't it?

Blah, Blah, Blah

Another week has come and gone. We've started yet another month. This month marks the 3rd anniversary of my MS diagnosis. Yippee! NOT. The past three years have been a real MS roller coaster ride. Actually the past 4 years have been. Seems the more I learn about MS the less I know. About the only thing I really know is that MS sucks. It's different for everyone. Your MS is not my MS and visa versa. I wish we were all the same. Maybe they would be able to diagnosis MSers easier and earlier. Maybe research would move faster. Who knows. A nice dream isn't it? The positive is that there are researchers out there that have made it their life's work to find the answer to MS. God Bless them. I'm just trying to take one day at a time. Deal with my limited mobility without becoming completely frustrated. I'm trying to remember to be patient with ME. Trying to focus on the really important things in my life and find joy in simplicity. It's hard not to try and fight for control over MS. However, I HAVE learned that fighting MS is a losing battle. Took me a few years though. Now, I go with the flow. Accepting , "It is what it is". Some don't like that mind set. They feel it's "giving up". It's not. I take my meds and do what I'm supposed to do. The difference is I don't fight my body anymore. I don't push when I'm tired (well, I TRY not to push). I'm much better about listening to my body than I was when I was diagnosed. I still slip, but not nearly like I used to. TWF (Train Wreck Fatigue) is still a very real and regular presence in my life. There are days where the only thing I can manage to do is get dressed, then go back to bed. I miss the life I had even a year ago. I was able to work 60 hours a week without batting an eye. I miss those days. MS is also an isolator. Especially when you are mostly home bound. I only get out when Mark is home because I can't struggle with the chair alone. That sucks. I miss who I used to be. I used to be so independent. Of course, the job took up most of my time, but I also socialized a lot with friends. For me to leave my house at 6 am and not walk into the door until 9 pm was more the norm than not. I have found that a lot of my "friends" have fallen by the way side. They have simply stopped coming by and calling. When I call I get the machine. Hence, the isolation. So, instead of feeling sorry for myself and sinking into pure boredom, I started crafting. I actually stumbled onto something I like to do and I think I don't do a half bad job either. I make cards. It's fun to send a friend or family member a card you made. Yes, it takes time. Sometimes a lot of time if I'm having problems with my hands or I can't sit for long. Card making keeps my mind and hands busy. Not to mention it exercises the brain cells. What do you do to keep yourself busy?

More research

Last night we had a really informative presentation at our MS Support Group meeting. Kim from Bakersfield came up and presented a DVD featuring researchers from Yale University, The Neuro Research Center in Calvery Canada, as well as others. The researchers spoke about the latest research they are conducting related to MS. The diversity of the research is amazing. One is focusing on the immune response, another is focusing on the potential use of Schwann cells for the reproduction/replication of myelin sheaths and yet another the correlation of prolatin relating axons. Amazing stuff. It was a crash refresher course for me on molecular and cellular biology! Unfortunately, all of these research projects are years away from actually becoming "main stay" treatment. However, it gives us hope that one day if not a cure, there will be treatment that will potentially be able to reverse the effects of MS. In fact, they want to wipe out the "permanent" in MS damage! Wouldn't that be wonderful! I'm trying to get copies of the latest information emailed to me. If I get it I'll post it all on here!

Myelin Repair Foundation an Multiple Sclerosis Awareness Week

This is MS awareness week (March 2-8). Please take a few moments to tell everyone in your Blog and personal lives about the Myelin Repair Foundation. The Myelin Repair Foundation is working towards new treatments for MS. Myelin repair is the newest and most promising pathway towards curbing the symptoms of MS and improving the lives of MS patients. Please post the following url on your blog and with your personal families and friends: http://myelinrepair.org/join_us/register.shtml