Friday, January 30, 2009

Train Wreck Fatigue Strikes Again

Recently, MS has appeared to decide to take a break from battling my body. While my balance was still wobbly I was FEELING better. My energy level was up and I was even seeing a big decrease (FINALLY) from the sde effects of the Rebif injection I take. Now I've noticed over the past few days a big increase in my fatigue level and the numb/painful area has returned on the outside of my right thigh. I've even started having some pretty significant spascity return to my legs. Looking back I don't see that I've done anything different (except maybe I'm not drinking enough fluids). Of course, that's always my first thought, "What did I do to bring this on". I know that's purely an emotional question. A reaction to what I perceive as a setback. Rationally I know I didn't do anything. I do know I'm under a lot of stress right now with other things going on in my life that I'm not at liberty to discuss here. As we all know, nothing will cause flareups and exacerbation's than stress. When I become rational again, I get angry. However, right now I'm too bloody tired to be terribly angry. This is one of the days where the fatigue is so bad I had to force myself up to get dressed. Now I'm sitting in my recliner, where, as soon as I post this I fully intend to take a nap.

Thursday, January 29, 2009

It is with great joy I announce....

the birth if my grandson Kyler. He was born this morning at 2:49 pacific time. He weighed in at a healthy 8 pounds 14 ounces (and he was EARLY)! Both mom and baby are doing great. I think dad (my son) is still in shock. LOL. God is awesome! What an incredible blessing he has given our family.

Wednesday, January 28, 2009

My blog was selected by Alltop to be featured on their site. Alltop is an "online magazine rack" that aggregates RSS feeds about popular topics. I had never heard of them before they contacted me. I went to their site and explored their MS section. IT IS AWESOME. You can check it out by clicking on the Alltop widget on my blog. They have the latest MS news and some great MS blogs. If you have trouble accessing the site, let me know and I'll post a link.

Monday, January 26, 2009

"Do over"

I'm sitting here in my family room with the fireplace warming the room, Maggie curled up on the love seat and Petunia sleeping on the couch. I'm looking through the windows at the snow in the back yard. Snow makes everything look so fresh, clean and peaceful. Don't you wish it was that simple in our lives? A fresh, clean start when we need it. I often wish we each had an opportunity for a "do over". An opportunity to do things over, make different choices. If you could have a "do over". What would you change? What decisions would you reverse? Or would you change anything, knowing that your wouldn't be the person you are or where you are without the struggles and experiences you've had?

Thursday, January 22, 2009

MS fatigue bites

I spent Monday and Tuesday morning over doing. Consequently I was on the couch Tuesday afternoon and Wednesday as well. You think I would learn after awhile not to hand TWF the opportunity to mow me down on a silver platter. (For those of you just joining the blog TWF is Train Wreck Fatigue a term coined by my sister-in-law who also has MS. If you watch the video at the top of the blog, my wonderful sister-in-law is featured on the video as well). It's very frustrating to get up in the morning and feel full of energy with a long list of things you want to do, people you want to see and NOT do those things. So, this week I just did what I wanted and pushed to get things done. Boy did I pay for it. Still am. Today just driving home from the valley was exhausting. I'm running my programs now, hoping that it will relieve my pain and help me sleep tonight. I find that almost amusing. I can't help but sleep during the day when TWF visits, yet it's not a refreshing sleep. It's almost as if my body just gives out and that kind of sleep is just trying to recharge my "batteries" to the minimal level. Just enough for me to wake up and be able to function on some level. Not only am I exhausted when TWF visits, but my pain level increases as well. Not a good combination. Reading other blogs pushing ourselves seems to be a common trait MSers have. I look at it this way: While pushing ourselves may not always be the smartest thing to do, I have a feeling we wouldn't do as well as we do if we didn't have that "fighting" spirit.

Wednesday, January 21, 2009

Multiple Sclerosis UCLA Lokomat Study

This was forwarded to me from my local MS Society office.

Dr. Barbara Giesser and colleagues at UCLA are testing a new rehabilitation approach to improve walking ability in people with MS, using a robotic device that moves the legs while the person is suspended over a treadmill. People with progressive forms of MS will undergo 36 training sessions over 12 weeks. Half will receive robotic locomotor training and half standard resistive exercise training.

If you are 18-60 years old, diagnosed with definite primary progressive MS or secondary progressive MS and have difficulty walking, you may be eligible. You are not eligible if you are unable to use an assistive device such as a walker. If interested, please call Elise Herlihy, RN at 310.267.4071 for info.

Monday, January 19, 2009

MS, Football and Grandbabies

It's been a few day's since I blogged, which is unusual for me. I think I just needed to take a break from being so focused on the MS. I can't help but think about it. I wobble like a weeble(remember those) and have alarms set to remind me to take my meds. So, I spent the last few days watching football. (No way can the Cardinals beat the Steelers. I'm not a Steelers fan but watching them kick the Eagles butt yesterday was no surprise to me). I'm planning on watching the Super Bowl this year. Mostly for the commercials since my boys (the Colts) didn't make it. I'm actually feeling pretty good. My sleep is still pretty fractured, but it's better than it was. My energy level remains much better in the mornings than the afternoon, but I'm hoping eventually that will improve as well. I plan on heading back to Texas soon. No grand baby yet, but we're getting close and the countdown is on! I can't wait. We know it's a boy and his name will be Kyler. I wish I lived closer. He will be 1500 miles away in Kentucky. That's the big drawback to having such a mobile society. Families tend to be far apart in distance. We all miss out on so many "little things" that make life special. I have to invoke my mantra. It is what it is.

Friday, January 16, 2009

Catch 22

The past few days have been an absolute whirl wind of activity. I went down to the valley on Wednesday to stay for a few days as both Petunia and I had medical appointments. I had one each on Thursday and Friday and Petunia had on Friday (today) as well. Fortunately Petunia once again got a clean bill of health and another round of puppy shots. She also gained 3 pounds in a week! She is going to be an absolute bruiser! My stamina held up pretty ell until late this afternoon then TWF hit. No sooner did I put my seat back during the drive home than I was out for the count for a hour. Would have slept longer if I was in bed or my recliner I'm sure. For me, the hardest part of MS isn't managing all the neurological issues (although they are a challenge), it's managing the fatigue. If I push I crash and burn, if I don't push I feel guilty. I often feel like I'm in a catch 22 situation. Darned if I do and darned if I don't. So I keep plugging along day by day putting one foot in front of the other. Hoping that each day will be better than the day before. I know I've said this before, but if I didn't have the wonderful extended support system I have I don't know how I'd cope.

Author Unknown

A Birth Certificate shows that we were born
A Death Certificate shows that we died
Pictures show that we lived!
Have a seat . . . Relax . . . And read this slowly....

I Believe...

That just because two people argue,
It doesn't mean they don't love each other. And just because they don't argue, It doesn't mean they do love each other.

I Believe...That we don't have to change friends if We understand that friends change.

I Believe....That no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.

I Believe... That you can do something in an instant That will give you heartache for life.

I Believe....That it's taking me a long time To become the person I want to be.

I Believe...That you should always leave loved ones with Loving words. It may be the last time you see them.

I Believe... That you can keep going long after you think you can't.

I Believe....That we are responsible for what We do, no matter how we feel.

I Believe...That either you control your attitude or it controls you.

I Believe...That heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

I Believe...That money is a lousy way of keeping score.

I Believe....That my best friend and I, can do anything, or nothing and have the best time.

I Believe....That sometimes the people you expect to kick youWhen you're down, will be the ones to help you get back up.

I Believe...That sometimes when I'm angry I have the right to be angry, But that doesn't give me the right to be cruel.

I Believe....That maturity has more to do with what types of experiences you've had And what you've learned from them and less to do with how many birthdays you've celebrated.

I Believe....That it isn't always enough, to be forgiven by others.
Sometimes, you have to learn to forgive yourself.

I Believe...That no matter how bad your heart is broken the world doesn't stop for your grief.

I Believe....That our background and circumstances may have influenced who we are, But, we are responsible for who we become.

I Believe...That you shouldn't be so eager to find Out a secret. It could change your life Forever.

I Believe....Two people can look at the exact same Thing and see something totally different.

I Believe...That your life can be changed in a matter of Hours by people who don't even know you.

I Believe...That even when you think you have no more to give, when A friend cries out to you - you will find the strength to help.

I Believe...That credentials on the wall do not make you a decent human being.

I Believe...That the people you care about most in life are taken from you too soon.

I Believe....The happiest of people don't necessarily have the best of everything; They just make the most of everything.

Thank you God for all the wonderful people who help us throughout the journey of life.

Thursday, January 15, 2009

Stress Management and MS

I was crusing the internet to see what articles I could find regarding stress and MS. I found a great article on WebMD regarding stress Management and MS. I have included to link below. Happy reading!

Stress, MS and excercise

We were all told that with MS there were two things we had to avoid. 1). Extreme heat and 2). Stress. Extreme heat is easy to avoid. Avoid being outdoors in high temperatures and if you MUST be outdoors wear a cooling vest. Not too terribly difficult. Avoiding stress, well that's another story. Poop happens. For me, my exacerbation last year started with a fall at work and progressed from there. Even an injury is stress. Whether that injury is from a simple fall or a surgery. It stresses your body and if your immune system is revved up, and you have MS, it attacks our central nervous system. So we have to try to come up with stress relieving techniques. Hopefully, the one's we choose don't include alcohol or drugs :) If you have mobility issues alleviating stress through exercise can be challenging, but not impossible. Simply doing range of motion with the extremities you can move easily is a big help. Physical activity of any kind helps release endorphins that are important to our well being. Not to mention the psychological benefit of promoting the "I CAN" attitude within yourself. Some find yoga very helpful. Other activities include swimming or a water exercise program. Communication is also very important in maintaining our stress levels. Talking with our loved ones. "Venting" with friends, finding a support group or even a therapist is vital. What do YOU do to help relieve stress?

Wednesday, January 14, 2009

It's a beautiful morning

It is an absolutely beautiful day here today. Very unusual to have weather like this in mid January! High will be in the mid 60's. As we are surrounded by snow capped mountains the view is spectacular. The perfect weather for an MSer to get outside and be active. Well, as active as you can be. Other than my hip bothering me I'm feeling pretty good. I slept well for a change and other than a drive down to the valley I don't have anything planned for today. I'll be spending the next two days in the valley and will return Friday evening, so no blogging while I'm gone. I'm taking Petunia with me. That in itself should be an adventure. She's ALL puppy at this point. She reminds me of a two year old. Running around at full tilt then crashing suddenly. Sound asleep face down on the carpet. Exhausting. LOL. She's been great for me. Keeping me busy and distracting me from all the stress in my life right now. I'd be completely lost without Mark. We've been through more together in the last 8 months than a lot of couples ever go through. He has never wavered in his support. I am so Blessed.

Tuesday, January 13, 2009

MS and Work

I'd be very interested to hear how you balance MS and work. Especially if you have limitations related to your MS. I've been off work since last May because of a fall I had that injured my left hip. (I hope to be cleared to go back to work in February). How do those of you who use devices or battle fatigue deal with it when you work? Do you find your employer to be supportive? Have you even disclosed to your employer that you have MS?

Monday, January 12, 2009

Top Health Blogger Award

On the blog, you'll notice a new addition. One I'm actually pretty proud of. The folks at Wellsphere (a great health web site) found my blog and not only asked it they could feature my blog on their site but awarded me a Top Health Blogger Award. This is important to me because it means that my blog, which really started out as a journal, is helping others with their own personal journey with MS which is really what it's all about. Helping and supporting one another during our personal journey's with MS.

Don't you wish.....

that we had a switch in our brains that we could TRULY take a break from everything? A switch that would make us forget all our worries and troubles. A switch that would give us at least a day with no bills, no frustration, no pent up anger and resentment, and no MS. That also means no wheelchairs, walkers, canes, shots, pills or falls. Wouldn't that be great. Of course, in a perfect world we would have that. Then again, in a perfect world we wouldn't need it because MS wouldn't exist. Ahhhh Utopia. On the flip side, would you be the person you are today WITHOUT MS or whatever your personal struggle is? Would you be as emotionally strong as you are? Would you have the insight to life that you have? I wouldn't. Prior to MS I had another challenge that I believe has helped me tough out the challenges of MS. I don't talk about the other challenge here, as I don't think it's the right forum. None the less, it made me tougher as I struggled, and continue to do so, with it. One of the unique things about MS is that is it so very different for each of us. Most never become disabled and end up in a chair or have to use an adaptive device. Then, there are those who are "special". Who get to experience all that MS has to offer. What constantly amazes me as I read other MSers blogs is how strong the writers are. You rarely read "whiny" posts. What comes through loud and clear is the inner strength each of them have. The character and perseverance, the determination they each have to live their lives on THEIR terms and not MS's. If you haven't done so read some of the blog entries of my fellow bloggers listed on my blog site. I think you'll find them very enlightening, not to mention downright entertaining. I wish I could write as well as they do!

Sunday, January 11, 2009

MS Trial: Oral Teriflunomide

I found the following information on the National MS Society web page.

Dec 30, 2008
MS Trial Alert: Study of Oral Teriflunomide (HMR1726) Added on to Copaxone Recruiting People with Relapsing Forms of MS Worldwide
Summary: Investigators at six sites in the United States and others around the world are recruiting 120 people with relapsing forms of multiple sclerosis (MS) for a study comparing two doses of teriflunomide (HMR1726), an investigational, oral MS medication, or inactive placebo, in people taking the approved drug Copaxone® (glatiramer acetate, Teva Pharmaceutical Industries). For the purposes of this study, "relapsing forms of MS" would include individuals who have experienced one MS attack in the past one year or two MS attacks in the past two years. The study is sponsored by Sanofi-Aventis.
Rationale: Multiple sclerosis occurs when the immune system attacks the brain and spinal cord. Teriflunomide is an agent that may decrease immune system activity in MS. Combining this experimental oral therapy with a moderately effective standard therapy may boost therapeutic benefits. Other studies of teriflunomide in MS are ongoing.
Eligibility and Details: People eligible for participation include individuals 18-55 years of age with relapsing forms of MS who have received Copaxone 20 mg/day subcutaneously for at least 26 weeks.
Participants will be randomly assigned to receive – in addition to Copaxone – either 7 mg teriflunomide, 14 mg teriflunomide, or placebo once daily for 24 weeks. The main goal of the study is to determine safety and tolerability. Other goals include evaluating disease activity as observed on MRI scans and relapse rate.
Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact a study center near you:
Phoenix, AZPhoenix Neurological AssociatesContact: (602)-258-3354;
Walnut Creek, CAThe Neurological Research Institute of East BayContact: (925)-938-5252;
Jacksonville, FLUniversity of Florida Neuroscience InstituteContact: (904)-244-9814;
Tampa, FLMeridian ResearchContact: (813)-877-8839;
Albany, NY Upstate Clinical Research LLCContact: (518)-533-1543;
San Antonio, TXIntegra Clinical Research, LLCContact: (210)-568-0261;


The problem with delusions is that the bubble will always burst. (You'll have to read my previous post to undestand this one). I REALLY tried to live in my delusional world yesterday. Hmmmm let's see how long it lasted. Did I manage to take the dog for a walk....kinda. We piled into the jeep and went to doggie u wash place. I sat in my chair and gave Petunia a bath (with Mark's MAJOR assistance). We then went to the Post Office. Petunia and I sat in the car while Mark went in. Then we went to home depot. I in my chair, Petunia on her leash held by Mark. We went straight to the screw section. (As I looked all the screws, bolts and nuts I wondered why in the world men need so many varieties and what the heck some of them did). While Mark spent about 10 minutes in front of the vast display of oddities, I held Petunia's leash as she basked in the attention of perfect strangers. After allowing Petunia her few minutes of bliss I wheeled the both of use down to the end of the aisle to the front door display. Since Petunia already has a healthy respect for the wheelchair I simply knotted her leash around one of the front handles of the chair and away we went. (All of 30 feet). Petunia again attracted folks with her sheer beauty (what is it about bulldogs that people find so attractive that even big burly construction workers stop gazing with glazed eyes at a power tool and come over to pet them? Ladies if your single.....get a bulldog) while I discussed the merits of frosted glass on a front door with the door salesperson. When Mark joined us he took possession of the leash and home we went. At which point I crashed and burned. I went to the recliner and proceeded to sleep for multiple hours. Sigh. Seriously, TWF hit and I was out for the count. We're talking at least 3 hours here, maybe more. I didn't wake up until after four. I felt as if I could easily have gone to bed for the night when I woke up. (I had fallen asleep while running my MS protocol). I didn't have the energy for dinner out. Which was very frustrating. I didn't do anything more strenuous than wheel myself about 300 yards. Piece of cake, but it wiped me out and it sucks. So of what my delusional self wanted to do yesterday, the only thing I accomplished with walking the dog. Kinda. Damn MS.

Saturday, January 10, 2009

Delusion anyone?

I find myself in a rare mood for me today. A mood where my attitude is "F" it all. I want to do what I want to do. The heck with what MS says. I want to walk my dog down the block, I want to go shopping ALL day and top it all off with an evening of dancing. OK. So I may be delusional. It's likely the Robitussin combined with all my other oral medications talking. Throw in oxygen deprivation from the chronic coughing and voila. My own personal delusion. I get tired of being housebound. True, I COULD get out, but it's a royal pain in the butt. Getting the chair in and out of the Jeep, heck getting ME in and out of the Jeep is a real challenge on a good day, not to mention a tough one. So, I find myself hibernating this winter. The irony of that is when I have the opportunity to get out with Mark or a friend, I'm too freaking fatigued. So, I'll forced myself because I'm dying to get out. The result of that is a few hours of enjoyment followed by two days of being knocked flat. Since I'm delusional today, I'm going to ask Mark to help me to take the dog for a walk and then me out to dinner. In my delusion I won't be knocked flat and WILL have the energy level to do those two things. I'll let you know how the delusion works out.

Friday, January 09, 2009

The end of the tunnel....and the oncoming train

I'm FINALLY starting to feel better. Not by much, but I'll take anything at this point. Whatever "bug" I had simply knocked me on my keister. (Not that it takes much to do that...all I have to do is try and walk down the hallway to accomplish that). I'm still sucking Halls like candy and taking Robitussin (NASTY stuff), but at least I'm not longer hacking up green goop. I'm just hacking now. I wonder how long it will take to be back to even 60%. If my immune system spent half the time protecting my body instead of attacking my neurological system I would have been over this crud days ago. Wonderful thing our immune system, when it works right. Instead, I'm forced to take a shot three times a week to "regulate" my immune system. In theory, it's supposed to "help" my immune system behave itself and stop attacking my central nervous system. Which it's not doing. "Helping" my immune system behave itself I mean. Apparently, my immune system has a mind all it's own. It laughs in the face of Copaxone and Rebif. It's only high dose steroids that forces it to back off and behave itself. For awhile. I've noticed an increase in the amount of neuropathy (that wonderful feeling you get when your foot falls asleep) in both my feet and my balance is once again uncertain. I'm ignoring the fact that my energy sucks and contributing that to the crud I've been trying to fight off for almost a week. (One can always hope. Besides I prefer optimism). I absolutely refuse to start the New Year off with an exacerbation. Do you HEAR me immune system?

Thursday, January 08, 2009

When is enough....enough?

As I sit here at 6:30 in the morning eating a warm slice of freshly baked bread (tells you how long I've already been up) slathered (is that a word?) with butter, I wonder exactly when is enough.....enough. We all know when we go over the limit consuming food (especially when it's fresh out of the oven), alcohol, chocolate (is there EVER enough Chocolate?) and all the other wonderful things and not so wonderful things, we enjoy. I think "enough" of those things are pretty clear, as are the consequences. The "enough" I'm talking about is more decision based. When are the negative side effects enough to make you stop taking a medication, even though you know it's absolutely a necessity. (Yep last night was shot night). At what point do you admit the stress of a job is actually harming your health and scream "enough"? I believe MSers are really strong fighters. We don't have a choice. It's either fight or curl up in a fetal position and give up. I've never met, or talked to an MSer that gave up the fight against the disease. Of course, we all get frustrated. If your an MSer with balance problems going out to dinner can become an embarassing ordeal. When get up after your meal your likely to walk out of the restaurant weaving. You just know folks are thinking you've had "a few too many" when you may not have had even a glass of wine with dinner. You see the looks as you pass. It can be embarrassing. You're trying your best to walk and everyone thinks your intoxicated. It's enough to make you stay home for dinner. Then you realize that you rarely go out anymore. It's to embarrassing if you wobble, your tired of the rudeness of the stares and actual comments, (I've read about the experiences some of you have shared on your blogs) and it's too much work if your in a chair. THAT'S when enough IS enough. Yep, I have MS. So the heck what? While MS isn't exactly a walk in the park its not nearly as bad as some of the other diseases out there I could have been diagnosed with. I have TWO friends battling cancer, a friend who's had a stroke (VERY YOUNG), and yet another with a serious form of hepatitis. So, when is enough...enough? When your feeling sorry for yourself and throwing an extended pity party and you refuse to either pull yourself out of it or get help. That's enough. When you allow the rudeness and insensitivity of others to make you feel you should isolate yourself, that's enough. When you want to give up and won't extend the many hands being extended to in friendship...that's enough.
Live is meant to be LIVED not merely endured. So live it to it's fullest even if you weave when you walk or roll to your destination.

Wednesday, January 07, 2009

Victory...I think.

I think I'm starting to feel better. I think. At least my head isn't as stopped up as it was. Petunia has spent the majority of the day outside as I was tired of the "Let's play with mommy's cane" game that was going on. I have a hard enough time staying upright without playing tug of war with a 30 pound bulldog. Thank you very much. I know what the training topic will be for her when I'm feeling better. It's really amazing how quickly she learned to respect the wheelchair. (Of course having her paw run over MAY have had something to do with it. Although it may take ME months to get over the guilt. Thankfully she wasn't hurt). Now.. I just have to get her over her cane fetish. Tonight is once again shot night. I seem to observe the passage of time by how quickly "shot night" to rolls around, and it seems to roll around faster and faster each week. I wonder if that's an indicator of how I dread injection night or simply that time seems to pass faster and faster the older I get.

Tuesday, January 06, 2009

Just when you think you couldn't feel worse.

Ugh. Thank God for Halls cough drops. I now have a very deep voice. Which might be considered sexy in the right circumstances. Unfortunately, having a deep sexy voice while trying to cough up a lung isn't one of them. However, I refuse to dwell on how crummy I feel and focus on the fact that it's NOT shot night tonight. YIPPEE. Always look for the positive I say. I toddled around today using the cane. Not a real smart idea when you have a 30 pound 3 month old puppy underfoot who thinks the cane is a cool toy and tries to take it away from you. Much safer to use the walker or chair. At least when Petunia is around. The nice thing about having to fight Petunia for the cane was that I was fighting her for the cane in the first place. I've gotten myself to the point that I use the wheelchair at home on an "as needed" basis. That's a big improvement from the fall of last year. It's been a slow process but I give a lot of credit to the protocols I run. I really don't think I'd be nearly as far along as I am now. My left leg is unlikely to improve much more and my balance may always be pretty iffy, but its better than it was. The wheelchair is still my friend, but one I wouldn't mind seeing a lot less.

Morning post Rebif

As I sit here waiting for the ADT folks to show up (we're having a home security system put in) I feel as if I'm trying to hack up a lung. On top of the aches that go with being hit by the Rebif bus. I've been back on Rebif for 7 months this month. How long does it take to get used to this crap so the side effects diminish?! Petunia is amusing herself by chasing a huge softball sized doggie ball (which she picks up with NO problem). There is nothing dainty about Petunia. She was 3 months old on the 5th and weighs 10 pounds for each month...already. She's rather like her owner. She tends to stumble a lot and battles fatigue that knocks her out with little or no warning. We make great couch potatoes. The good thing about being down is I'm running my programs every 3 hours. Besides a few minor flareups and big time fatigue (we won't mention recent falls or balance issues) the MS seems to be under control. For Now. I know it's still lurking waiting for an opportunity to strike again, but I intend not to allow that opportunity to happen. I'm a big believer that Dr. Rhodes' machine will help me do that. Of course, I'm staying on all my meds. I am now on the maximum dose of Neurontin for the muscle spasticity and I'm STILL having spasms. Granted they are few and farther between, but no less painful. Fortunately I never had the side effect of drowsiness from the Neurontin and it has made a positive difference. I think that we hope that with each drug we take for our MS we really hope it will be the "cure all". Sadly, no such thing exists for MS....yet. I am ever hopeful that research finds a cure, or at the very least a drug that will truly hold MS at bay for everyone. A drug with MINIMAL side effects. I'd sign up for that!

Monday, January 05, 2009

Day three...

of feeling like crap. At least I semi have a voice. Now the creeping crud has crept into my chest. Wonderful. Fortunately, I can stay in where it's warm and spend most of my time sitting in my recliner wrapped in my "feel better" blanket and watch TV. I love HGTV. I can spent all day watching their home improvement programs, while Petunia alternates between chewing her board and skating on it. At least she's not chewing on the furniture! Crud, I just remembered tonight is shot night. Yuck. Which means that on top of feeling like crap because of the creeping crud I'll have the Rebif aches to deal with. Perfect, just freaking perfect. Thank God the family room couch is comfortable!

Sunday, January 04, 2009

Stem Cell Research with Neural Injury

Regardless of personal opinion regarding stem cell research, some remarkable things are being learned about stem cells and exactly how they can help people with a wide variety of illnesses, injury and disease. Not the least of which is MS. The following is an article written by Roy Riblet, Ph.D. a member of the Multiple Sclerosis National Research Institute. If you would like more information you can contact him dierectly at There are also other papers regarding new and ongoing research on their web site
Developmental Genetics: Manipulating Stem Cells to repair neural injury
The aims of this project will lead to regenerating neural tissues from stem cells for the purpose of repairing damage to the nervous system caused by disease, such as multiple sclerosis, or injury from stroke or trauma. We seek to:
1. Identify genes that regulate the development of stem cells into all neural cell types, and identify the mechanisms controlled by these genes to reveal potential targets for therapeutic intervention.
2. Screen small molecule libraries for drug candidates that will appropriately direct stem cell differentiation towards particular mature cell types needed for tissue restoration.
Multiple sclerosis is a demyelinating disease of the central nervous system. Much attention is now focused on developing therapies to promote oligodendrocyte formation or to transplant oligodendrocytes to remyelinate damaged areas and regain function in the central nervous system. Neural Stem (NS) cells can be isolated from fetal or adult brain and can act as a source of myelinating transplants, but for greatest efficacy these cells must first be directed to the oligodendrocyte progenitor (OP) pathway. We are able to isolate and grow populations of neural stem cells and crudely direct their differentiation in culture. We will now screen and compare various effector molecules and small molecule libraries to identify compounds that will efficiently direct, for example, NS -> OP transitions. These cells can be used for remyelination transplant therapy. Alternatively, the differentiation directing compounds may be effective in inducing remyelination by endogenous NS without involving transplants.
We have in place three analytical systems to track, characterize and quantify the differentiation stages and pathways shown in the Figure. First, we have been using fluorescent antibodies and histochemical stains to identify individual cells at each developmental stage in our cultures. Next we are beginning to use Reverse Transcription-Polymerase Chain Reaction (RT-PCR) to follow induction and repression of specific critical genes involved in these differentiation steps. Lastly we are accumulating appropriate cDNA clones to construct microarrays for fluorescent hybridization analysis of the cultured cells. This will produce detailed global measurements of expression changes in a large spectrum of genes to get a complete picture of the changes in these cells as they mature, and of the effects of candidate small molecules that we identify as effective in directing differentiation.
Embryonic stem (ES) cells in culture will develop into NS at a rate which is mouse strain dependent, i.e., is genetically controlled. Therefore we will analyze several mouse strains and compare their transition rates on each step of the developmental pathways. We will correlate this data with the gene expression comparisons we generate simultaneously. This should identify the critical genes that regulate differentiation at each step and allow us to focus on these as intervention targets. In addition, a program to induce mutations in ES cells that affect the ES -> NS transition has yielded several mutants that increase this rate tenfold. We are collaborating with the research group that made these mutants to genetically map and identify these genes. We can then evaluate them as candidates for intervention and drug development.

New to a

sick start. Today is day two of fever, cough and laryngitis. I hate being sick. My throat feels like it's on fire and I have a nasty headache on top of it. UGH. Happy New Year to me! Well, on the bright side it gives me an excuse to veg out on the couch all day and watch TV on our new TV! What a difference in technology! I wish the MS research advanced as quickly as electronic development does. Wouldn't that be wonderful. Alas, the reality is that medical research is a long and laborious effort. So, we wait. Hoping that maybe THIS year is the year that they announce that they have found at least a way to promote regeneration of the myelin sheaths, if not a way to completely stop the attacks. As I sit here drinking my hot tea, I'll surf the net and see what new info I can find. As always, if I find anything new I'll add it to the blog. Hope everyone has a Happy and HEALTHY New Year!

Friday, January 02, 2009

Myelin Repair Foundation

Doing a bit of research this evening I found The Myelin repair Foundation. This is a foundation is dedicated to find a way to reverse the damage caused to the myelin sheaths by MS. The following information was taken directly from their web site: It makes for long reading but contains a lot of good information.
Myelin Repair FoundationResearch Highlights Fall 2008
In July 2008, the Myelin Repair Foundation completed Year 4 of our five-year research plan to discover and validate new therapeutic targets for myelin repair in multiple sclerosis (MS). When the MRF was founded in 2002, relatively little was known about the underlying biological processes that resulted in myelin formation and how these processes were affected by MS. However, it was becoming apparent that the brain and spinal cord had a capacity for repair and there was some evidence that myelin repair was taking place spontaneously in the early stages of MS. The MRF formed an interdisciplinary research team to identify critical biological questions that would have to be answered before effective myelin repair therapies could be developed. Together we designed a comprehensive research plan to answer these questions in order to identify new biological mechanisms, pathways and ultimately drug targets that would lead to effective therapies to repair damaged myelin.
The MRF’s five-year research plan includes developing new research tools and conducting investigations in six key areas:
What is the role of neural stem cells in myelin repair?
How does myelin form?
How is the immune system involved in damaging myelin? How does the immune response prevent myelin repair?
Disrupting the immune response and stimulating myelin repair.
Repairing the blood brain barrier to promote myelin repair.
What new or improved animal or cellular models do we need to ensure this research provides answers applicable to MS in humans?
1. What is the role of neural stem cells in myelin repair?
MRF scientists are actively involved in trying to understand the molecules and signals that are involved in directing the migration of neural stem cells to areas of demyelination in MS patients (the MS lesions) and the molecules and signals that are involved in promoting the differentiation of neural stem cells into the myelin-forming cells (oligodendrocytes) of the central nervous system (CNS). These myelin-forming cells, or oligodendrocytes, are constantly being produced in healthy individuals and in patients with demyelinating diseases such as MS. However, for reasons that are still unknown, MS lesions often do not remyelinate or repair.
The MRF has identified several of the molecules that play a role in orchestrating the migration of oligodendrocyte precursor cells to MS lesions and/or the differentiation of stem cells into the myelin-forming oligodendrocytes. As the required reagents and tools are generated or become available, MRF is systematically evaluating the therapeutic potential of each of these molecules for myelin repair. In recent studies, MRF scientists have successfully stimulated myelin repair in a persistent, MS-like lesion by blocking one of these molecules with an inactivating antibody. Based on the success of this experiment, we have gone on to identify small molecule, drug-like compounds that can also bind to and block this molecule. We are in the process of evaluating these compounds for their ability to promote myelin repair in various animal models of demyelination and MS.
In addition to the critical role neural stem cells play in myelin repair, we have also demonstrated that bone marrow-derived mesenchymal stem cells (MSC) can also play a beneficial, though indirect, role in promoting myelin repair. Early studies by the MRF and other groups have shown that there is a clear therapeutic benefit when animal MS models are treated with human MSC. The MRF has extended these studies by determining that MSC produce their therapeutic effects by inducing resistant neural stem cells to differentiate into myelin-forming oligodendrocytes. The MRF has identified the mechanism responsible for this effect, and ongoing efforts are focused on determining the full therapeutic value of these discoveries.
2. How does myelin form?
As part of the experimental tools and models developed by MRF scientists in order to better understand the complex process of myelin repair, MRF researchers have developed a precise method for culturing neurons and oligodendrocyte precursor cells so that myelination can be studied in a reproducible manner from initiation to the formation of mature, intermodal segments identical to those found in human myelin. Using this co-culture system, the MRF has identified molecules critically involved in myelin formation. Using small molecule inhibitors of one of these potential therapeutic targets, the MRF has recently demonstrated the therapeutic potential for this target for promoting myelin formation and myelin repair both in vitro and in vivo. These findings, coupled with studies using small molecules to modulate oligodendrocyte precursor cell migration, demonstrate for the first time that drug-like small molecules that modulate critical aspects of oligodendrocyte cell biology hold promise as novel therapeutic treatments for MS and other demyelinating disorders.
3. How is the immune system involved in damaging myelin? How does the immune response prevent myelin repair?
MS is a known autoimmune disease. In that disease, initiation and progression is due in part to the recognition of normal myelin as being foreign to resident B-cells and T-cells. In fact, the majority, if not all, of the novel therapies under development for MS are targeting different aspects of this autoimmune response. MRF scientists have shown that in addition to damaging myelin and axons, the immune response in MS may also be indirectly affecting oligodendrocyte cell survival by exacerbating certain aspects of cellular stress. During periods of myelination, oligodendrocytes must produce vast amounts of myelin protein in order to maintain the active process of myelination. This high protein synthesis rate makes the myelinating oligodendrocytes vulnerable to conditions and factors that enhance cellular stress. In MS, activated immune cells secrete factors, such as interferon-gamma, that promote cellular stress. This results in a vicious cycle in which the more oligodendrocytes are recruited to remyelinate MS lesions, the more vulnerable they are to the detrimental effects of the inflammatory response.
MRF scientists have been investigating ways to protect oligodendrocytes from this cycle of inflammation, cellular stress, and ultimately oligodendrocyte cell death. The MRF has identified several of the molecules involved in this process and for the last year, MRF scientists have been working with the Laboratory for Drug Discovery in Neurodegeneration at Harvard University to identify drug compounds that would act as therapeutics to protect oligodendrocytes from these detrimental effects. Early lead compounds have been identified, and additional studies are being conducted to confirm the effects of these compounds in vivo and in vitro.
4. Disrupting the immune response and stimulating myelin repair.
Since the majority of the existing and emerging therapies for MS target the immune response, MRF scientists have begun to explore how inhibition of MS-associated inflammation can unmask the potential for myelin repair in this complex disorder. By utilizing a novel combination strategy to simultaneously block immune responses and promote myelin repair, MRF researchers have achieved dramatic recovery in the experimental autoimmune encephalomyelitis (EAE) animal model for relapsing–remitting demyelination. The results achieved by this combination therapy were significantly better than results of experiments using either therapy alone. MRF investigations are continuing to evaluate this combination therapy in other MS models, and in culture, to optimize this synergistic effect.
5. Repairing the blood brain barrier to promote myelin repair.
The role of the blood brain barrier in MS is still not clearly understood. It is thought that the breakdown of the blood brain barrier may play a critical role in initiating and maintaining the autoimmune responses that contribute to this debilitating disease.
Restoring the integrity of the blood brain barrier could significantly retard the disease process in MS. MRF researchers have identified several signaling pathways that are highly up-regulated in the blood vessels of the CNS but are absent, or expressed at very low levels, in blood vessels elsewhere in the body. They have begun to identify the key regulatory molecules within each of these pathways in order to identify potential drug targets that could be utilized to restore the integrity of the blood brain barrier and determine if such treatments have therapeutic value for the treatment of MS.
6. What new or improved animal or cellular models do we need to ensure this research provides answers applicable to MS in humans?
In addition to the development of the co-culture system that is allowing us to follow the complete process of myelination in vitro, the MRF is actively engaged in the development of novel animal models and tools that will allow us to precisely follow myelin repair in vivo. The MRF has recently developed novel methods to selectively eliminate oligodendrocytes or other cells of interest in vivo, and in so doing better understand the role particular cell types play in myelin repair.
The MRF is also developing unique animal models that will allow a quantitative assessment of the production of new myelin and the preservation of old myelin after various therapeutic treatments in vivo.
Furthermore, MRF researchers have begun measuring changes in gene expression during the course of the disease in the existing EAE models. By using laser dissection to examine gene expression in areas within lesions, near lesions, or in unaffected tissue, we are beginning to compare how thousands of genes behave throughout the clinical disease course. This process has provided new methods for measuring changes in the disease course at a molecular level. In the future, these studies will be validated and expanded by measuring changes in protein and lipid levels within the same tissue samples.

Post Holiday....

The festive ornaments are coming down. Families have returned to their homes and re-entered the "real world". I've always wondered why we can't keep that wonderful holiday spirit all year round. You know what I'm talking about. I never had more strangers offer to help me in my wheelchair than over the holiday's. Seems that once the holidays are over I become invisible again. I'm sure each of you that have an obvious disability have had the same experience. Folks tend to either stare or refuse to look at you. They pull their children away, as if they are afraid they will "catch" what ever you have. I enjoy the innocence of a young child. They will walk right up and ask about the chair and why I'm in it. Of course, a parent quickly swoops down telling them that they were bad for asking. I always say I don't mind. I really don't. I wish adults were as straight forward and honest. These days I'm really trying to spend less time in the chair and use the walker or, God Forbid. The cane. The cane is the WORST for stabilizing my balance. As I find myself loosing my balance I'm waving the cane around in the air like it's a nun-chuck as I promptly do a facer. The walker is a little better. Sometimes. My problem is three fold. My balance will suddenly just go, or I'll go to take a step and my left leg doesn't support me. So even with the walker I do a facer. The chair is much safer for me and I'm adjusting to being in it. Now when I sit in it it feels like "home". I feel safe there. Of course being in the chair brings it's own challenges. It's a pain to get out and about. My New Years Resolution is to get OUT of the chair. However, the chair is a big benefit as far as energy conservation. That's often my biggest issue. So, in 2009 I will keep plugging along. Trying my darnedest to get better. I run my programs faithfully and they ARE helping. I'll be going back sometime this spring for a "tune up". I wonder if Dr. Rhodes has a program that will help me lose weight???? Dr. Rhodes.....are you reading???