Tis the Season

Wow!  I sure have been avoiding the blog lately.  I don't know why.  I feel like I don't have anything to write about when I know I have a million rampid thoughts running aroung in my head daily. 
It's Christmas time.  Today we put up the tree.  Usually we have it up the weekend after Thanksgiving.  I normally decorate the house with all my little trinkets that I collected throughout the years.  We put on Christmas music, put on out Santa hats, and drink hot chocolate.  Today we just put up the tree and a couple of knick knacks and then I took a two hour nap.
I did manage to get the nativity set out.  That of course is the one thing that will always get put out as the true symbol of this time of year, but I am not sure if I can muster the energy for anymore decorating.  The problem with the decorating is not the decorating itself, is knowing that you will have to eventually put it all away.  Just the thought of that makes me want to take another nap.
Christmas shopping is so much easier now with the internet.   Internet sales are just as good with free shipping on most websites and can do it from the comfort from my own home.  I did venture to a store or two,  not during any busy times, with my lovely daughter, but I can never last more than an hour out before I am totally wiped out.

This is my favorite Christmas song:

http://youtu.be/4cP26ndrmtg

Life goes on

So the funny thing about life is that it just goes on.  No matter what you feel like.  Happy, sad, tired, full of pep, ready to concur the world, or ready to hide under the covers. Life happens.  It has taken me so long to write this next post, because I was at a standstill while life was happening. 
Had another MRI, 10 lesions, with "slight" progression of demyelation. Makes me wonder what their definition of slight is. 
The trouble with MS is that life does happen. In the past couple of months, I have had a relapse, a father whose cancer has returned, worries over a teenage daughter who is struggling in school academically and socially, a son who is autistic, feelings of isolation, having a change of social environment for myself, missing working in the hospital as an R.N. and so many more life style adjustments I can't even remember, frustrating doctors, oh and an increase in some pain, especially in my head.
The past few days, I have been able to walk a little bit better.  This always offers a little hope.  I went to a craft fair today.  How I love to go to craft fairs.  Brought my spirit up.  All those people.  I just love to watch them.  I wonder if they know how lucky they are to be able to walk around and browse.  I lasted a little longer than usual, about an hour and a half, but I was dragging my feet along with my cane by the time we left.  It was definitely worth it.  I will probably pay for it with exhaustion for the next few days, but today I was part of life. 
It is night.  I am sitting here typing this and my eyes are so tired, I can hardly focus.  I know that when I get up from this recliner, I will be stumbling down the hall, running into the walls, trying to make it to my bedroom without knocking any of the pictures down.  The truth is, it will be worth every ache in pain and step backward I will take tomorrow, because today I got to participate.
My hope is tomorrow, I will be lucky enough to participate too.  MS is strange that way.  You just never know what you will wake up to.  More than likely, it won't be so great, but you never know.  Maybe, just maybe, I will be on a lucky streak.


http://youtu.be/w_DKWlrA24k

sanity

I got this MS poem off of the MS Society's discussion board and thought I would share it.  I guess you have to be able to laugh at yourself at times to keep some semblance of sanity.

I think that the side-effects from the seizure medication Topamax are starting to ware off some what.  I am starting to regain my sanity and a little more of my energy.  What I am losing is my right side.  UGHHHHH!!!!!!!!      My left side has been consistently weak for over a year and a half now, but my right side will be weak for a week or two and recover, but now I am afraid it's not recovering at all.  As Sir Winnie the Pooh says "Oh Bother".

I can tell you that I am a little bit afraid.  OK, a lot afraid.  Maybe, it's just seeming to take longer cause of this stupid Topamax making me loopy for so long and sleepy for so long.  Yea that's it.  That's what it is.

I did get to go to the Balloon Fiesta yesterday.  It was absolutely beautiful.  Over 400 hotair balloons launching over my head.  Used my walker with the built in seat and was able to to do it.  Usually refuse to use my walker and stick with my cane, but I would not been able to do it otherwise and it was definitely worth it.  The best part of it was that the Creamland Cow Shape Balloon actually took off this year.   Woo Hoo.  It's the little things in life that make you smile.  You have to enjoy these things and not take them for granted.  Life is grand, no matter how you have to enjoy it, make it work for you  :o)

Cognitive Dysfunction

Article obtained from: http://ms.about.com/od/signssymptoms/a/cognitive_over.htm?p=1

Cognitive Dysfunction as a Symptom of Multiple Sclerosis



By Julie Stachowiak, Ph.D., About.com Guide


Updated November 24, 2008

About.com Health's Disease and Condition content is reviewed by the Medical Review Board


.Ever feel lost?

Stephen Schauer / Getty Images
"Cognitive dysfunction as a symptom of multiple sclerosis 1(MS) may be the one that makes me the saddest. I can get angry at the “MS hug2” and frustrated with trembling hands3, but being mad at how my own brain and though patterns are misfiring is a little too complicated. It is also the symptom that is the hardest to talk about with people without MS, as it often comes across as a lame-sounding apology for being “ditzy” or is met with people mentioning how forgetful they have also become since they had children or turned 70.


Sure, we all misspell words sometimes or leave something off a list. However, many of us with MS have a moment that we can point to as evidence that the cognitive neurons are not as robust as they used to be. My “big moment” came when I intended to dash into a store to pick up some last-minute holiday wrapping supplies. I got into the middle of a big display area of giant shelves of shiny, colorful paper and ribbons – there was loud Christmas music blaring, twinkly lights blinking everywhere, and people grabbing at sale items while screaming at their out-of-school children. All of this “input” combined to not only completely make me forget what I came for, but to completely immobilize me. I don’t know how long I stood there staring uncomprehendingly at the whole scene before something jarred me back to reality and I fled from the store, empty-handed.

What Does It Feel Like?


While cognitive dysfunction feels different for everyone and can change daily, many people with MS can identify with part or all of the following descriptions of MS-related cognitive problems:


•Problems with Abstract Conceptualization: Put simply, this is difficulty with figuring things out in the “abstract” in a way that is going to lead to a desired outcome. It means that people get easily overwhelmed if something is too complex, as it is hard to organize thoughts and tasks, to apply lessons learned from multiple past experiences, and to be “flexible” enough in their thinking to come up with alternate solutions if a problem arises. This can negatively impact judgment.


•Short-Term Memory Deficits: The most common form of cognitive dysfunction in MS, this usually manifests in things like forgetting whose number you just dialed, going to the pantry and not knowing what you went there for (even though you just looked at your recipe), or being unable to remember if you took your pills or not. You may also find yourself repeating a sentence or part of a story to someone that you just told it to, not aware that you had already said it.


•Attention Difficulties: This can manifest as “distractability” or simply inability to keep your mind on a task. You may find that you are unable to multitask or that even minor ambient noise, like the television or music, can make it virtually impossible to concentrate on things like reading or performing sequential tasks, like those involved in cooking.


•Slower Speed of Information Processing: This includes all the aforementioned symptoms, and it means that the brain simply cannot take in and prioritize all of the information coming at a person at once. This includes problems processing language (spoken or written), sensory information (visual, sounds, smells, touch), spatial information (like that involved in navigating while driving), or more abstract things like social cues and reading people’s emotions.


How Common Is Cognitive Impairment?


Between 34 and 65 percent of people with MS have some sort of cognitive impairment. Even people who recently started having other MS symptoms may have cognitive dysfunction, but it might be so subtle that they didn’t notice it or attribute it to other things, such as aging or being tired.


What Causes It?


Cognitive dysfunction in MS seems to correlate with more permanent destruction of brain tissue, such as “black holes” and atrophy4. Therefore, cognitive dysfunction tends to be worse in people with progressive forms of MS than in people with relapsing-remitting MS. In general, people with progressive MS seem to be more severely affected (however, as mentioned, even people with very little disability can experience some degree of cognitive dysfunction). People with more pronounced cognitive dysfunction tend to have:


•More T1-Weighted Lesions: T1-weighted lesions 5in MS are areas that appear dark on MRI scans 6. These are also called “black holes” and indicate that there has been destruction of nerve fibers called axons7, not just demyelination.


•Atrophy of Corpus Callosum: This means that the bundle of nerve fibers that connect the right and left hemispheres of the brain has shrunk, due to destruction of nerve cells.


However, it can also be made worse temporarily by other symptoms of MS8, such as:


•Depression: Depression9, an extremely common symptom of MS, seems to impact cognitive function, especially in the areas of memory, attention and ability to concentrate. People who are depressed also often exhibit problems making good decisions, communicating and maintaining relationships with others and overall complex functioning, such as that required to make quick decisions and cope with complicated problems in everyday life.


•Fatigue: Fatigue10 is the most common symptom of MS, experienced by an estimated 85 to 95 percent of people with MS, and often considered the most debilitating. The crushing fatigue felt by people with MS can have a huge impact on how well we perform cognitively.


•Heat Intolerance: MS-related heat intolerance11 can make all symptoms of MS worse, including cognitive dysfunction.

How Severe Can It Get?



Cognitive problems in people with MS can become severe enough to make it difficult to work in a profession that requires speedy or complex problem-solving. Most people, however, can develop coping techniques that keep cognitive symptoms from interfering with daily life too much.


Real, debilitating dementia as a symptom of MS is very rare, occurring in less than 5 percent of patients, who are usually very severely affected by other MS symptoms. In contrast to other types of dementia, such as that caused by stroke or Alzheimer's disease, the following problems are NOT usually associated with MS-related cognitive dysfunction:






•Aphasia: Aphasia is the inability to understand the speech of other people and/or express oneself verbally. While people with multiple sclerosis (MS) often have trouble finding words or communicating, this is more often dysphasia, a symptom of MS that is not as severe as aphasia.


•Agnosia: Agnosia is difficulty recognizing familiar things, such as shapes, sounds, objects, people and smells.


Additional Points/Information


It Comes and Goes: Just like many other MS symptoms, cognitive problems will probably be worse at certain times. Other times, you may feel like your old self. See if there is a pattern to this (you may want to keep a symptom log or at least jot down notes for a couple of days). As much as possible, plan critical tasks for those times when you feel your sharpest. Also, notice if certain things make your cognitive problems worse – music, sounds from the television, encounters with certain people, even different kinds of lighting can have profound effects on cognition. When possible, adapt your environment and situation to make things better for you.






Remember, Life is Complex: Fight the urge to be hard on yourself or get too frustrated when something “slips through the cracks” and you are late to an appointment or forget to return a phone call promptly. If you think about it, pretty much everything we do involves many, many steps, requiring: use of long-term and short-term memory, monitoring and adapting to the reactions of others, simultaneously performing many related and unrelated tasks – all while often fighting fatigue or a number of other symptoms that we might have. Try an experiment for yourself: Take a child grocery shopping, cook dinner while talking on the phone or observe yourself getting ready for a meeting. Look at how many things have to happen to get from Point A to Point B and marvel that anyone gets anything accomplished.



My Experience


The first cognitive problem that I became aware of was a gradual fear of driving. At first, I would feel anxious that I would forget directions and be so preoccupied with getting lost that I would be stressed out when I went anywhere. Then I noticed that driving along even very familiar routes was becoming increasingly scary – I would be afraid to change lanes, nervous that I was going to run red lights, distracted by too many cars, frightened of big trucks and uneasy if the lighting was too bright, too dark, too dappled. As I had not yet been diagnosed with MS, I just told myself that I was being silly and kept pushing it, until the anxiety started really limiting my activities.


Since my diagnosis, I have noticed many more cognitive symptoms. Conversations are sometimes hard to keep up with and I often find myself making a point out of context. I know that I repeat myself a lot and have a habit of not finishing sentences. When I am writing, I fight the urge to steer away from certain words that I seem to have forgotten how to spell.



I've made several adaptations when it comes to driving: I haven't driven on the highway in many years, and I prefer to drive alone, so that I can focus 100% of my attention on the road and what I am doing. But on good days, I still try to make small neighborhood trips during quiet traffic times. Aside from driving, I have noticed that I sometimes want to avoid conversation so people don't pick up on any of my cognition problems. But because I want to stay engaged and social, I make a serious effort to chat with people -- I figure no one will be seriously injured (unlike driving) if it takes me a couple of minutes to find the word that I am looking for or I tell a story for the second time in five minutes. "




This is not my article, but obtained from about.com.  The link is above, but is reflective of what I feel a lot of the times.

Copaxone

So I was sitting here thinking about what to blog about and all I could come up with was my very boring shot.  I was going to basically copy and paste information on what my shot is and what it is used for. Blah, blah, blah, blah, blah  BORING.  So if you really are interested in that I will just paste the link and you can read that information for yourself.  I mean it is interesting on how theoretically it works and how many people it theoretically have had prolonged there relapse periods for.  People have done amazingly well on Copaxone.  If you like the technical aspect on which cells it works on in the body, it really is fascinating too.

http://www.sharedsolutions.com/

The other day I was so bored, I was looking up celebrities with Multiple Sclerosis.  There are a few, not many.  I guess I was just curious to see if money and power can get you out of being afflicted too, but apparantly not.  Montel Williams, Annette Funnicello, Richard Pryor, Squiggy (from Laverne & Shirley) and Terri Garr oh and one of the Osmond brothers are the ones that I can remember off the top of my head.

I know that Richard Pryor passed away from complications and Annette is pretty much vegetative, everyone else seems to be doing okay.  Hopefully, life is looking up for them.

Well as for me, trying to keep my chin up.  Still increasing the dose weekly on my seizure medication.  Making me dopey, just like one of the seven dwarfs.  I am at 75mg twice daily with a goal of 100mg twice daily, so if my typing is off or goofy or dopey, just have a hearty laugh at my expense, believe me, I plan to revisit these pages later when I have stabilized to do the same thing.

http://youtu.be/kC7NpEISWxU

Inspiration in times of trouble and illness

A very dear friend of mine wrote of an experience she encountered that should be an inspiration to us all, sick or not.  This is her story reprinted with her permission.

"I just wanted to share an incredible story of the love of God I saw in a homeless woman.

I had seen this car off and on in an abandon parking lot for about a month. I had thought of stopping several times but was too busy or afraid I would not know what to say or how to relate to this person.
So tonight I left work late again, feeling sorry for myself for working such long hours for the past month and feeling no so thankful for my life. I told God I was sorry because I know I am bless but still had a bit of a pity party going on inside my head. As I approached where this lady parked I prayed for strength to stop and wisdom to know what to say. God showed me he took care of it all.
So I pull in an park beside this car that looks like it should be in the junk yard that has a big sign HOMELESS. I introduced myself and shook the ladies hand. She apologized for being reluctant to shake my hand and did not want to explain why it was an issue just a ghost from the past. I without even thinking (totally a God thing) sat down next to her car on the pavement sitting Indian style so I could hear her better without the traffic noise. It was so incredible. This woman had the JOY of God in her. She had a radiant smile even when telling me her story. Very into the Bible and God this woman is.
Her story is this: She asked her husband to let God into their lives and he was not a Christian so he divorced her. She has four children and then became ill. The doctors do not know what she has but fear it may be bone cancer. She lost her job because she was ill so much of the time and of course then lost her insurance. She had no money and needed help for her children so she called her ex-husband to see if he could help until she could get back on her feet. Instead he obtained a lawyer and because she could not provide for the children he now has sole custody. He then moved to Pennsylvania (they were from another State) so the kids would not be influence by their mother (primary purpose I feel was to keep her from talking about God). She drove here 4 months ago in her beat up little car to be where she could at least see her children. She eats and sleeps in this car. It has no heat and a cracked windshield. It eats oil like M&Ms.
We talked for 1 1/2 hours but it seemed like only a few minutes. She went on and on about the love of God, the joy we are going to have in Heaven, and how important it is to love one another. One man stopped and had picked tomatoes and cucumbers from his garden for her. She was thrilled and then handed me some, I declined but she insisted that I take some as they would spoil before she could eat them all. Then she shared her favorite recipes with me. She is such an enthusiasticjoyful person.
Another young man with tattoos stopped and gave her some money and kept apologizing that he did not have more for her (I lost my stereotype about tattoos and the people who have them in one second). Another couple stopped just to talk to her. And the third man stopped and listen to her praise God and he gave her $20. She was thrilled because now she had enough money to get her Pennsylvania plates and would not be fined by the police.
I offered to have her come sleep in a warm cozy bed at my house. She declined 1) because she did not know me and explained you learn to be safe and 2) I have a dog and she is deathly allergic to dogs and cats. I was totally humbled by hearing this woman's story and embarrassed that I had been whining about my blessed life. God does teach us humility.

This woman kept praising God for everything. I thought of her circumstances and thought, " I would be a basket case". But her she was singing God's praises. I was whining about my great life and she has nothing and praises God in every sentence and with a smile on her face and a twinkle in her eye. She is such a champion. Wow, I would love to have that kind of love for God. How about you."~~Nancy Rogers

Incredible.  We all have struggles in our lives.  Some of us just know how to pick ourselves up better than others.  A lesson to be learned here.  Nancy is an inspiration in herself and yet she finds inspiration in others, all through the love of God.  My pity party is done for a while.  I lift my troubles back up to the Lord.  I will open my eyes and my heart for all the inspirations that surrounds me.  I have seen them too, just not acknowledged them as I should.

http://youtu.be/jFg_8u87zT0

cruel joke

I am sitting here trying to decide on what MS is.  Is it a disease or just a very cruel joke.  My conclusion leads me to think that it is the latter.  At least for me, every once in a while, it gives me this little glimmer of hope; a little taste of what life used to be.  How I used to dance around when I cleaned the house.  I used to tend to my little flower garden.  How I could window shop for hours.  How I could clean for hours.  Make a nice meal for my family.  Go to the grocery store on my own.  Then just when I think that I am going to be nearly normal again, it all starts slipping away again. 

I start getting clumsy, my coordination isn't quite right, my legs don't cooperate, my words aren't following what my brain is trying to say.  Now my right side of my body is getting all uncoordinated and weak too.  Seizures are back.  New seizure meds making me loopy.  I am overwhelmed and exhausted.  I am tired of taking a shot everyday that makes me feel like getting stung by a bee.  Some days I cry like a child and my poor hubby just doesn't know what to do about it.

Read an article the other day on Annette Funicello and boy that sure didn't lift my spirits any.  She is basically in a vegetative state.  I never want to be to that point.  I pray to God that I never get to that point.  God bless her.  I hope that she is not suffering.

New Study on Cost Effectiveness of MS Therapies : National MS Society

The Disease Modifying Drugs for MS are so expensive. I am on Copaxone and before I used the VA, my monthly copay with insurance was $250. It was outrageous. I can't see how anyone affords this. This is just one of my medications. Here is an article that talks about the cost and effectiveness: New Study on Cost Effectiveness of MS Therapies : National MS Society

Hope Endures

Well, I kind of liked the video I posted last week, so I thought I would do another one today.

This one shows that the right side of my face is not working as it used to.  The muscle symmetry is missing.  It is weird how the nerves cross at the base of the head.  So like me, if you have problems using your left leg and left arm, then it is actually the right side of the brain that is most affected. 

 This is evident by the right side of the face being affected.  Whenever I have any relapses, my right vision is affected along with muscle control on the right side of my face. My left leg starts to drag and my left foot drop becomes more profound.  My left hand loses coordination to the point I can't even tap my fingers together rythmically.

If you close your eyes, hold out your arms, you should be able to touch your nose with each hand with no problem.  I can no longer do that with my left side.  Proprioception is the bodies ability to know where any anatomical part of the body is as well as sensations. 

I made this video of me singing (not great), but if you notice, the right side of my face does not react as the left side does.  It used to have symmetry, so this is not my normal.  Well, I guess it is my new normal.  Anyway, hope it brings you a little joy, probably most likely through laughter :o)

Letter to God

Dear Heavenly Father,
I wanted to start by thanking You for all the miracles in this world that we often fail to see.  I try to remember that sometimes we are blind to all the wonders that You have surrounded us with.  I ask that you help open up my eyes so that I don't lose sight of everything that You have given us, as well as the greatest sacrifice You gave through your son Jesus.

I wanted to ask you to give knowledge, wisdom and insight to the medical providers who take care of those people with Multiple Sclerosis.  Help them find a cure for this ravaging disease.  Help them understand that each person with this disease is just that, a person.  Help them see us for who we are and not the label of the disease.  Help them treat us as such. 

There are so many people who are struggling with coping with MS, I ask that you give each and everyone of them, including myself, the perseverance we to overcome the obstacles that come in our way.  I ask that you give the caregivers, loved ones, mothers, fathers, sisters & brothers the patience and understanding to help us through this.

I can not imagine all the struggles that you hear about on any given moment of any given day.  Today I just wanted the world to know that I am asking you for all of the above as well as help in understanding how I am going to help others when there are times that I can't even help myself.  Please give me guidance.  Please help me heal both physically, spiritually and emotionally from what MS is doing to me.  Please heal others who are suffering as well.

I love you.

Lisa

Pain

Pain has been such an issue lately.  I hurt from head to toe.  I was or am weaning myself off of the amytriptilline, which I take for pain control, but I hurt so bad.  It's weird how this pain is so different than the pain you experience when you stub your toe or a paper cut on your finger.  My pain is aching, flu-like pain.  Also just my husbands touch on my arm sends off intense pain signals.  I don't know what to do.
I think I may increase my dose again, but I am nervous.  I think this medicine might be the cause of my "seizures" that I was diagnosed with last month.  I have to choose from the lesser of two evils I suppose.
Today I went outside and tended to my flowers. A few years ago my flower garden would have been so full of beautiful blooms.  This years garden looks very sparse, sad and pathetic, but I need to keep whatever I can going.   After the sunset, I pulled  a few weeds, and now I am completely wiped out.  My pain is everywhere now and so intense.
Maybe, one day I will have a beautiful garden again.

http://www.youtube.com/user/pianki?blend=1&ob=5

Avoidance

MIA for a while.  I have been avoiding my blog because I don't feel particularly inspirational at this point.  Having a bad few months and can't seem to climb back out of it fast enough.  2 day stint in the hospital where I was diagnosed as having seizures on top of everything.  They started me on a seizure medication Keppra where I was supposed to take 500mg twice a day and then after 2 weeks move up to 1000mg twice a day.  Well I took it for a week and a half.  Let me list the side effects and you can deduce why I stopped:  Weakness, dizziness, drowsiness, loss of balance......  Everything I already have plus 10x worse.  I could barely walk a few feet without losing the ability to lift my legs up very well.  It sucked.  Haven't told my doctor this yet.  Not looking forward to that.


Where to find inspiration.  I am at a loss.  I seem to be knocked down a lot lately, but never knocked completely out.  I get back up, but with a lot of help.  My husband is the love of my life.  He stands by me.  He hugs me so tight through my tearful sessions.  He opens doors, holds me up, goes out of his way to make sure I have everything I need.  I could not be any more blessed.  Loving husband, wonderful family and kids, friends whom I may not see very often, but I know they love me as I love them.  The good Lord whose faith in me never waivers even when mine might falter a little.  Well I guess there is the inspiration I was looking for.  Sometimes I try to look so far ahead that I fail to see what is already here.


Still it is so hard not to ask why me?  I am not old.  I want to be able to do everything like I could before becoming "sick".  I love summer, but don't get to enjoy it.  Heat makes all the neurons go hay-wire and can't function.  I want to walk around the neighborhood, but can't.  I want to hike in the mountains, but I can't.  I want to be a floor nurse, but now am confined to an office (grateful to be able to work, even if it's only for a few hours).  I know that I am supposed to focus on what I can do, but it's hard not to miss what you could do.  I want this all to be a bad dream.  Somebody pinch me and wake me up.  I don't like this.  I actually hate this.  Cruel cruel disease.


Well that put a damper on things now didn't it.  What's that saying?   Hope springs eternal.


http://www.youtube.com/watch?v=1CSVqHcdhXQ

pondering

Hmmm.  I am trying to figure out a correlation between my periods of sick and environmental factor.  I have gotten colds that don't really present like colds.  I get a low grade fever and then muscle aches, very slight cough.  Every time my MS symptoms go crazy, I have these "colds". 
I am also wondering about spatial orientation and  balance.  When I am at home, I can walk better for the most part.  My balance is a little better.  When I go out into any kind of public place it seems my world because more topsy turvy.  Almost like sensory overload.  I get dizzy when there is too much going on and I am easily overwhelmed.
Then there is multi tasking.  It seems not to long ago I could do multiple things at the same time, no problem.  Now I can barely focus on one simple task.  I can't sing and type.  Weird statement, but I noticed that today. 
Then there is the memory.  I am so forgetful.  I have such a problem with remembering the simplest things, like turning off lights and forgetting to actually turn on the washing machine.  I have been forgeting to put laundry detergent in.
BTW, my little dramatic moment is quite over.  I am almost back to my previous baseline which makes me happy.  I am feeling well enough to go with my beautiful daughter tomorrow to find her very first prom dress.  I am very excited.  I hope I can last the whole waiting for a teenager to actually make a decision on her dress.  Oh boy.  I am already tired just thinking of it.
Hope that everyone out there with this disease finds their peace.  Today I have mine back.

http://www.youtube.com/watch?v=Dn7pWm4i0ZU

new Rx?

Scripps closer to multiple sclerosis knockout



Published on April 18, 2011 by admin · No Comments

By Jeff Ostrowski

Palm Beach Post Staff Writer



JUPITER — Researchers at Scripps Florida say they’ve found a way to stop multiple sclerosis in mice.

In a study published this week in the journal Nature, Scripps scientists say they’ve developed a compound that stops MS by knocking out TH17, a type of white blood cell that malfunctions in patients with MS and other autoimmune diseases such as rheumatoid arthritis and lupus.

If it works in humans, the new treatment, known as SR1001, would have a couple of advantages over existing MS drugs, said Tom Burris, a professor in the Department of Molecular Therapeutics at Scripps Florida.

First, it could be taken as a pill rather than injected. Second, the compound would attack only TH17 cells while sparing other disease-killing cells.“Right now, the treatments that are out there suppress the entire immune system, and that comes with a lot of side effects,” Burris said.

It’s unclear whether the treatment is a cure or simply stalls the disease, he said.

An estimated 400,000 Americans have MS, according to the Multiple Sclerosis Foundation in Fort Lauderdale. MS, which prevents nerve cells in the brain and spine from communicating, is most commonly diagnosed in women between 20 and 40.
“The hunt for a new MS drug is very urgent,” said Kasey Minnis, director of operations at the Multiple Sclerosis Foundation. “There’s no medication that’s super-effective in all people with MS.”

The new treatment is promising enough that it has garnered interest from drug companies, Burris said.“We have a lot of interest from biotech and pharma companies, and we’re trying to strike a deal with someone,” he said.

Scripps could license SR1001 to one of those companies within a few months, Burris said.

TH17 cells produce interleukin-17, a natural molecule that can cause inflammation.

“In these autoimmune diseases, the body is tricked into attacking itself,” Burris said.

When scientists blocked signals from the TH17 cells in mice, their MS disappeared.

Dr. Daniel Kantor, an MS specialist in Ponte Vedra Beach, said the treatment could work, but he also urged caution. MS is so much easier to treat in mice than in humans, he said, that researchers sometimes joke that rattling the cage will cure the disease in laboratory animals.

“Even if it’s really going to work in the end, it will take years before it’s used in humans,” Kantor said. “Animal data is different from human data. Until you have large human studies, you never know.”

Scripps’ work was supported by National Institutes of Health grants totaling $3.6 million.

 Article source: http://www.palmbeachpost.com/money/scripps-closer-to-multiple-sclerosis-knockout-1408926.html?cxtype=rss_money_16350

funk

So this post was supposed to be an uplifting blog about my life with MS.  I find myself in the midst of a funk and am having a very hard time lifting myself up let alone anyone else.
It's been a little over a week that my symptoms started to come back with a vengeance.  I am frustrated. I am angry.  I don't like this feeling I have right now.  I feel so alone in this.  My husband tries to understand but in many small comments (unintentional) I know he doesn't.  I have a feeling latelty that there is no hope.  No one to help me.  I feel isolated in my home sometimes.  I hate this disease and I am learning to hate who I am.  I hope this feeling will pass soon. 

I keep lifting up my problem to God, but maybe I don't know how to let go.  I have pain in my heart and pain in my body.  I am tired of watching life pass me by and not being able to participate.  Sometimes I think..........well it's not what I want to think.
I need some help.  I don't know who or what or where.  Pray.

invisible symptoms

Invisible Symptoms in MS - Part 1


http://bit.ly/MSLOinvisiblesymptoms


Invisible Symptoms in MS - Part 2


http://bit.ly/MSLOinvisiblesymptoms2


I think that this is one of the hardest things about having MS.  People will tell you that you look great, but the truth of the matter is that physically you are struggling.  I get told all the time that I look better or something along the line, when I am so fatigued, hurting, my mind is a jumble, daily tasks look like an enormous mountain to climb.  There are days when I almost feel as good as I look, but inevidely, the invisible symptoms sneak back.  Today they came back. 

Second thought

When I was younger I took so much for granted.  I was always one of those who walked super fast everywhere I went never once thinking that it would come to an end. I drove my car to wherever even if it was in walking distance.  I didn't think twice about my ability to run, ride a bike or dance.  In my mind, I didn't even know that I took these things for granted.  Never giving it a second thought.
Throughout my nursing career I have taken care of many people who lost some of their natural abilities.  I always felt sorry for them, but never truly understood the emotional toll that they were or went through.  I took good care of them for my 12 hours, empathized or so I thought, with their situation, but at the end of the day, I got to walk out of that building on my own to feet.
I guess what I am trying to say is walk, run, skip, jump, hop, twist and shout like there is no tomorrow.  Go swimming, skiing, hiking, ride your bike, and enjoy the outdoors, it is a wonderful gift to be able to move your body. Do the cotton-eyed joe, the electric slide, the cha cha slide, the chicken dance, and of course we can't forget the Macarena.

http://www.youtube.com/watch?v=bmKhEGiNshA

National MS week

This is national MS week, where MS will be in the forefront for a few days.  Then next week everyone will have moved on to something else. Not me.  MS is with me all the time.  I can never escape it.  My days are filled with it.  I can't even try to forget. 

 Daily reminders around every corner when I try to forget.  I can't stand on my tip-toes to reach something on the top shelf with out losing my balance.  I can't walk very far with out using a cane.  IF I forget my cane, my speed is about a turtles pace and my walk is like that of a toddlers (swaying side to side).  Someday's my body fools me, for whatever reason, I can do a little bit more.  But no worries, because in a few days it plays a cruel joke and I am back to toddler hood.

Today I am tired.  I am visiting my family and went into the mountains for a litte bit.  Lasted a couple hours.  It's so nice to be out of the house like a real person.  Now, however, I am paying for it.  I am utterly exhausted.  Feel like my energy reserve has been used for the next month.

Trying to be full of optimism, but just not feeling that today.  If it weren't for my family, I probably would be more housebound than not.  No fun.  I really hate not having my independence.  I always wonder when my husband will be tired of having to help me out so much. 

I hate how my body betrays me.  I hate the look that good old steroids gave me.  My doctor tells me to excercise to lose the weight.   I try.  Then I succeed.  Then I get knocked back down.  It's really hard to keep getting up just to be knocked back down.  At what point do you just stop getting up.  I hope never, but every once in a while I feel like it would be easier to stay down.

I would like to acknowledge that in this great big world of ours that mY MS is a small problem.  I would like to pray for those victims on this past weeks hurricances and tsunamis.  May God bless those who are in need.  I pray that he comforts those who have suffered losses and gives strength to those who are suffering.  I pray that He opens the hearts and minds of all around the world and touches their spirit to offer support whether it be financially, by volunteering or by lifting their hearts up in prayer.

God Is Our Hope

 

God is our hope and strength,  a very present help in trouble.

Therefore will we not fear, though the earth be moved,

and though the hills be carried into the midst of the sea;

Though the waters thereof rage and swell,

and though the mountains shake at the tempest of the same.

There is a river, the streams whereof make glad the city of God,

the holy place of the tabernacle of the Most High.

-- Book of Common Prayer 1979

New criteria

There is new criteria now for an MS diagnosis which may help those who have all the symptoms but whose doctors won't diagnos them with the disease.  If this criteria had been in place before my lesions began showing up, but while I was having symptoms, I can't help think that maybe my body would be in a better place than it is in today. So frustrating to know this.  This is the article as retrieved from http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4713

International Panel Revises “McDonald Criteria” for Diagnosing MS


Mar 09, 2011
 An international panel has revised and simplified the “McDonald Criteria” commonly used to diagnose multiple sclerosis, incorporating new data that should speed the diagnosis without compromising accuracy. The International Panel on Diagnosis of MS, organized and supported by the National MS Society and the European Committee for Treatment and Research in Multiple Sclerosis, was chaired by Chris H. Polman, MD, PhD (Free University of Amsterdam). Full details are available in the free-access paper published in the February 2011 issue of Annals of Neurology (Ann Neurol 2011;69:292-302).

“Treating MS early and effectively is likely our best way to prevent permanent damage to the nervous system, so speeding the diagnosis of MS without compromising accuracy is a key goal,” stated National MS Society Chief Medical Officer Aaron Miller, MD, Professor of Neurology and Medical Director of the MS Center at Mount Sinai Medical Center in New York City. “These updated diagnostic criteria appear to achieve this goal.”


The National MS Society is developing materials to help neurologists understand and apply the 2010 revised diagnostic criteria in practice. These include plans to produce pocket cards summarizing the new criteria. (These will be available from the National MS Society’s Professional Resource Center in coming weeks.) Download a Tipsheet (.pdf) for neurologists that summarizes the new criteria.


Background: MS is a chronic, often disabling disease that attacks the central nervous system. Its progress, severity, and specific symptoms are unpredictable and vary from one person to another. Determining if an individual has MS can be difficult because there is no single test that can accurately determine the diagnosis. Generally the process of diagnosis involves obtaining evidence from patient history, clinical examination, a variety of laboratory tests, and magnetic resonance imaging (MRI) scans, all intended to rule out other possible causes of disease and to gather data consistent with a diagnosis of MS. The newly revised 2010 McDonald Criteria incorporate updated information on using MRI as a tool for speeding diagnosis.


The McDonald Criteria for Diagnosis of MS were originally published in 2001. They were named for the chair of the original panel, the late neurologist W. Ian McDonald, MB, ChB, PhD. Dr. Polman chaired the panels responsible for the 2005 and 2010 revisions. The previous versions have been the subject of extensive debate and testing. A significant body of new information about the utility of the Criteria has been published. The International Panel reconvened in May 2010 in Dublin to consider these new data and to develop consensus for revising and updating the McDonald Criteria, with an eye toward speeding and easing diagnosis without compromising accuracy.


Diagnosis of MS - The Basics Still Apply: The diagnosis of MS is a partly subjective process, and is best made by an expert who is familiar with the disease and who can interpret imaging and laboratory evidence that can supplement the clinical diagnostic process. The requirement remains that there must be no better explanation than MS for the clinical and laboratory findings – other possible diagnoses must be considered and excluded. (Read more here, or go to this link for free access to published guidelines on the differential diagnosis of MS - Multiple Sclerosis 2008 14;9:1157-1174)


The key to an MS diagnosis has been, and remains, the objective demonstration of dissemination of typical disease signs and symptoms in time and space. The 2010 revisions maintain this requirement, but offer several ways of using imaging to determine dissemination (see Tipsheet - .pdf). It remains the case that while the use of paraclinical and laboratory examination can speed an MS diagnosis, a solid diagnosis can be made on clinical grounds alone.


No single test can provide adequate information to support an MS diagnosis. Therefore, supportive and confirmatory paraclinical examinations – including analysis of lesions by MRI, of cerebrospinal fluid (CSF), and sometimes of evoked potentials – are still important in helping to confirm an MS diagnosis. The Tipsheet (.pdf) provides additional summary information related to assessing evidence of MS.


What Has Changed: There is new emphasis that the McDonald Criteria should only be applied to those who present with a clinically isolated syndrome (CIS) suggestive of MS, or who have symptoms consistent with a central nervous system inflammatory demyelinating disease. The panel also considered how well the Criteria can be applied to specific populations such as childhood MS (pediatric MS) and Asian and Latin American populations. They concluded that the 2010 Revised Criteria would apply to the majority of these populations, but the paper describes specific situations in which further considerations and tests would be recommended to properly diagnose MS in these groups.


In past versions of the McDonald Criteria, guidelines were presented for using MRI to demonstrate dissemination of disease in time and space, based on earlier studies. For the 2010 Revised Criteria, published recommendations from the European MAGNIMS multicenter collaboration have been incorporated (Swanton JK, Rovira A, Tintoré M, et al. Lancet Neurol 2007;6:677-686; Swanton JK Fernando K, Dalton CM, et al. J Neurol Neurosurg Psychiatry 2006;77:830-833.) These indicate that:


Dissemination in time can be demonstrated by a new T2 or gadolinium-enhancing lesion on a follow-up MRI, with reference to a baseline scan, regardless of when the baseline MRI was obtained. (Previous versions had specified that the reference scan be performed at least 30 days after the initial clinical event; this is no longer a requirement.)


Dissemination in space can be demonstrated with at least one T2 lesion in at least two our of four areas of the central nervous system: periventricular, juxtacortical, infratentorial, or spinal cord. These lesions need not be gadolinium enhanced.


In the case of diagnosing primary-progressive MS, aspects of the previous criteria remain, but the MAGNIMS recommendations for demonstrating dissemination in space were incorporated to harmonize with other 2010 updates. As shown in Table 1, diagnosing primary-progressive MS requires one year of disease progression (determined retrospectively or prospectively), plus at least 2 out of these 3 criteria: dissemination in space in the brain based on at least 1 T2 lesion in periventricular, juxtacortical or infratentorial regions; dissemination in space in the spinal cord based on at least 2 T2 lesions; or positive cerebrospinal fluid (CSF) findings.


While the International Panel has provided revised and simplified criteria for MS diagnosis, recommendations for further testing of the Criteria are made as well, to bolster the scientific evidence supporting the 2010 recommendations.


Comment: The 2010 Revisions to the McDonald Diagnostic Criteria for MS should speed and make easier and more certain the diagnosis of MS. As with the original Criteria, these need prospective study, and it is expected that additional research will result in further refinements.


“Efforts like the work of this international panel illustrate the National MS Society’s role as a convening force to push forward progress that not only improves clinical care, but also identifies research opportunities and gaps,” noted Timothy Coetzee, PhD, the Society’s chief research officer. “The paper highlights the need for research to identify additional biological markers of MS and its subtypes. This gap impedes progress on several fronts, making it an important target for our research efforts,” he continued.

Research Study

This is the research study I am involved in.  I have been on the study drug or placebo since September.  If you want contact information, go to the National MS society website (link is on blog).  Article below was retrieved from National Ms Society website.

MS Trial Alert: Clinical Trial of Sex Hormone Estriol Recruiting Women with MS to Participate - Updated

Summary: The National MS Society is funding a team of investigators at 15 medical centers to conduct a two-year, controlled clinical trial of an estrogen (estriol) added to standard therapy to treat MS. Investigators administer either oral estriol along with Copaxone® (glatiramer acetate, Teva Pharmaceutical Industries Ltd.) or Copaxone plus inactive placebo to 150 women with relapsing-remitting MS. If successful, this clinical trial could lay the groundwork for a larger, definitive trial that could lead to a new treatment option for women with MS, an option that would be a pill, not an injection. Importantly, the exclusion criteria for the study have recently changed, such that patients previously treated with an interferon or Copaxone will no longer be excluded.


Sixteen Centers Recruiting Patients: The estriol trial is taking place at 15 medical centers across the U.S. Women between 18-50 who are diagnosed with relapsing remitting MS and are interested in participating in this clinical trial should contact the nearest site to discuss their eligibility:


This study, costing more than $5 million, is being funded by the National MS Society – through the support of the Southern California Chapter and other chapters and private donors – and the National Institute of Neurological Disorders and Stroke. Adeona Pharmaceuticals is providing drug for the trial.


Rationale: Estriol levels rise to very high levels naturally during late pregnancy, a time when most women’s MS disease activity declines. This led some to suspect that estriol may be responsible for this easing of symptoms during pregnancy. Dr. Rhonda Voskuhl (University of California, Los Angeles) and others explored this lead in mice with MS-like disease, and later, with National MS Society support, Dr. Voskuhl conducted a small, early-phase trial of estriol in 12 women with MS. Results in mice showed that estriol treatment was indeed protective. Results in the pilot trial showed that estriol treatment decreased disease activity in women with relapsing-remitting MS.


According to Dr. Voskuhl, the trial principle investigator, in using estriol they “aim to simulate some of the disease protection offered by pregnancy. We are very enthusiastic about this new agent since it has decades of known safety and since it will be given as a pill, not a shot.” She further states, "Estriol treatment also has the potential to be more potent in halting disability in MS, since estrogens have been shown in animal models to be not only anti-inflammatory, but also to directly reduce brain injury."


Trial Details/Eligibility: The two-year study is a double-blind, placebo-controlled trial that will take place at 15 sites in the U.S. (listed above). Investigators will administer estriol in pill form to women between the ages of 18-50 who have a diagnosis of relapsing-remitting MS. The oral treatment will be given in combination with subcutaneously injected Copaxone, a standard treatment for MS, for 2 years. The team is evaluating effects of the treatment combination on relapse rates and several clinical and magnetic resonance imaging measures of disability progression.

One Flu at a time

So it seems I was recuperating from a cold, when next thing you know.....the dreaded....the feared.....the loathsome.....the grotesque stomach flu decides to throw it's two cents in.  So now my cold is worsening and my body is very angry.  I got past the stomach part yesterday, but for the life of me can't seem to stand up right for more than a few seconds without feeling like the lights are dimming. UGHHHH!!!
I am curious to know if it's the MS or just me, I can't seem to recall anymore.  Whenever I get sick, virus or bacteria, it takes me forever to recover.  I get really weak. I have been in bed for two days, today I spent it on the couch.  I am slightly upright at this moment, but not quite. 
Today I fell.   Falling is not fun.  You should have seen how super fast my hubby was.  He was like Flash Lightening jumping out of bed to catch me.  He's my greatest american hero (swoon and sway).

http://www.youtube.com/watch?v=e9Q3orQhEcA&feature=BF&playnext=1&list=QL&index=1

MIA

Haven't posted in a few weeks. Been in a slump. Got some kind of cold or virus or something that has made all my symptoms go wacko.  UGHHHH!!!  I was doing so well, got up to 9 minutes on the exercise bike at  4 resistance level and then doing a couple minutes on the elliptical, but now I am back at square one.  My legs are like jello again, especially my left. The world is topsy-turvy once more.  I have news for you, weebles wooble and they DO fall down.

What's a girl to do?????  Back at square one, well probably a few steps ahead of that.  I am going to begin again once I recover a little bit more.  

This is going to be a short post.  My focus is not quite good right now. So as Tigger says from Winnie the Pooh, Ta-ta for now.

http://www.youtube.com/watch?v=pZpkr2CmoB4

Back to the AFO

Well today I got my AFO for my left foot drop.  It's not pretty, but I sure can walk better.  My toes are not getting in the way.  My left hip is not having to compensate.  It's weird how my body adapted to that foot drop, because it seems so foreign now that my foot is in anatomical alignment again.  I feel like Mr. Roboto now when I walk, but hey it works!!!!!
Still feeling good.  Breathing a little easier these days now that I have a little bit of hope.  The way I have felt for the past year and a half was very hard to deal with emotionally.  I don't want to ever be in that place again.  
Still not driving for long distances, mainly out of fear.  I don't want to wear myself out and be so far that I can't drive myself home. The good thing is I can get out for short periods of time and feel like a normal person.  My work is going awesome too.  The shorter shifts are so much better.  I don't feel so drained when I come home.  I did have to take a nap after work today, but it was early enough to allow me to enjoy the rest of my evening.


http://www.youtube.com/watch?v=SbyAZQ45uww

the absent minded professor

Okay, so I am still walking better and better everyday.  Yay for me.  But, (there's alway a but, not that kind, the other kind), now my short term memory is all messed up.  What's up with that??????  I have resorted to my cell phone for some reminders.  I mean everyone walks into the kitchen once in a while and thinks what did I come in here for.  But literally, I will have gotten up 4 or 5 times with no inkling of what I got up for.  
And I can't spell worth anything anymore.  I have spell check red underlines all over the place now.  I know I didn't do well in the 6th grade spelling bee, that darn u in beautiful tripped me up, but this is getting to be slightly ridiculous.  I have always prided myself on my vernacular.  I never use words that were too pompous, but come on.  I looked at my posting for my school discussion board and I was using their for there, so no spell check flag.  What's up with that????
Lately too, I'll be singing, (aww come on, I'm not that bad) and I stumble all over the words.  Let me tell you, kind a weird when you have your ipod in your ear and all the rest of the world hears nonsensical sounds coming out of my mouth.  Arggghhhh.  I love to sing.  MS stay away from my singing......


http://www.youtube.com/watch?v=QGJuMBdaqIw

snow day

Today was a snow day for many people around the United States.  It rarely snows where I am, but today was most definitely a snow day.  I love the snow not the blizzardy kind, but nice peaceful big flakes floating to the ground kind.  That's what today was like.
I seem to get more tired when there is a weather front.  I wonder if that is what it is like for everyone? I can't seem to recall what it felt like when I was "normal".  My memory seems to be fading a lot.  
I am still walking better each day.  I am holding my breath that it stays that way.  I actually did a little bit of dancing to my Ipod while I was cooking dinner. (well dancing is not quite what others would call it, but it worked for me).
My right eye seems to be all over the place.  I am back to seeing dark spots in my vision when I exercise.  Speaking of which, I can do a whopping 7 minutes now on the stationary recumbent bike.  Woo Hoo!!!!  May not seem much to anyone else but it feels so good to know your muscles can push the pedals again.  It's the 5th month of the Copaxone shots, I wonder if they are kicking in.  Or maybe I am on the actual study drug.  Whatever it is, just keep kicking in.  I am ready to enjoy my legs again.  I haven't been quite as dizzy either.  Still have some issues when turning my head to the right and the curves my husband takes when he's driving. (sorry hun, I love you but you are mr. Speed around the corners).
Last night, after my daily shot, I was wondering if I could handle taking this shot for the rest of my life.  The shot gives me huge welts that lasts for almost a week.  I guess if it means the difference between walking and not, then I will suck it up.  I sure do hope a "real" pill comes out soon.  Not one whose side effects is worse than the disease.
Well, that's all folks.  Stay warm and cozy.  Drink some yummy hot chocolate.


http://www.youtube.com/watch?v=YDp88CkjY_k

Today was a good day

I am little wary of saying this, but today was a good day.  I've actually had 3 good days in a row.  A good day basically means I can walk better, I am less tired, and my speech is discernible.  My boss was kind enough to allow me to switch from 3 eight hour days to 4 six hour days.  I think it is making a difference.  Today I was home before 4.  I was able to lay down for an hour to rest, which made the rest of the evening so much better.  I am looking forward to more of these days to come.  Keeping my fingers crossed.  Hoping, maybe after over a year of waxing and waning,  I will have a long reprieve.
I have been walking so much better.  I don't even need the cane in my house at all.  I use it at work because I get tired and clumsy so better safe than sorry.  I can ride the recumbent stationary bike in my house for 7 whole minutes.  May not seem like much to you, but it's a huge milestone for me.
I did have a momentary lapse in memory.  I totally spaced a paper that was due.  Luckily for me, my instructor was kind enough to give me a reminder and allow me to complete the task.  I am going to have to figure out a way to ensure this does not happen again. I have been extremely forgetful lately.  I am or was pretty sharp and could remember just about everything, but lately I think I know something and it turns out to be all the way out in left field.  Will have to work on this.
But anyway " I gotta a feeling, tonights going to be a good night!!!!!

http://www.youtube.com/watch?v=1aSbKvm_mKA