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.