Be aware! Be very aware!!!

This past week has been MS Awareness Week.  I am pleased that the well-run and most helpful National Multiple Sclerosis Society (NMSS) conducts this week each year in an attempt to spread the word about this dreadful disease. (BTW - there are several MS organizations out there but only the NMSS is legitimate.  The others are poorly run and spend little of the money that is raised on research or client assistance.  The NMSS is consistently rated as an excellent charity.  So give generously but be sure you give to NMSS) Multiple Sclerosis is the most common degenerative neurological disease in the US and Western Europe.  MS primarily strikes people between the ages of 15 and 55 - the so-called prime of life and after 10 years with the disease, half of all victims are severely disabled.  I was diagnosed in 1983 at the age of  29 although now that I understand the symptoms I know I was sick in high school.  After cheering at a football game, my feet would feel like they were on fire.  Mom would rub and rub trying to relieve the discomfort.  Once, during a game I just spaced out completely.  I didn’t have the energy to jump up and down, couldn’t remember the words to the cheers and couldn’t concentrate enough to even know what was going on in the game.  I just stood there sort of staring into space.  I didn’t even realize anything was wrong.  The following week the Pep Club gave me hell, all but calling for the forfeit of my varsity cheerleading letter because I wasn’t ‘engaged” in the game.  On an intellectual level I know it is silly but I still harbor an intense level of anger about that incident that  eats at me.  I want to go up to the major critics and yell, “ I have MS and you were a jerk! Apologize, dammit!’ Multiple Sclerosis means “many scars”.  Perhaps this is one of them. Actually, the disease is characterized by multiple lesions on the brain, spinal cord or nerves.  The lesions heal and are replaced by scar tissue, hence the name, and the affected nerve function is severely impaired or stops completely.  Symptoms range from numbness and tingling to complete loss of use of limbs, loss of bladder control, vision impairment or even loss, loss of cognitive function, fatigue - a loss of energy so severe that it has to be experienced to be understood.  Loss, loss, loss.  It is all about loss. For me it has involved loss of my ability to run outside and play with my boys when they were little, loss of vision (once completely in my left eye), loss of bladder control, loss of the joy of sitting in the hot sun (heat causes an increase in symptoms which for me means it gets really really hard to walk) loss of  the strength required to get the milk jug out of the frig, loss of the ability to process multiple stimuli which severely limits my ability to drive, loss of a job I loved, loss of the ability to concentrate, loss of the ability to be a 10 in bed, loss of cognitive function that was once good enough to get me classified, along with a bunch of wonderful NC friends, as “gifted and/or talented” and to get me admitted to MENSA, loss of access to the rolodex of names and words that used to be easily available in my brain, loss of energy to the extent that I can plan only one event a day and then hope that I will not be too fatigued to do it, loss of emotional control and EXTREME LOSS OF PATIENCE WITH THIS RIDICULOUS UNPREDICTABLE DISEASE.

Despite What You May Think, I Am Not Bi-polar

I have lived with diagnosed  multiple sclerosis since 1983. (although I know now that the disease was active even when I was in high school) According to the doctors that made the diagnosis I should have been unable to walk for at least the past 5 years.  Thanks to medical advances in the mid-1990’s, when I was showing definite signs of neurological deterioration, I am still mobile and functioning.  On many days, unless  you know me well, you would have no idea I have MS by watching me walk or move. My hands shake and I drop things a lot but still, it is not an obvious thing. Of course, there are also days when I stay in bed.  I plan my life very carefully to avoid fatigue and those advances of the ‘90s require that I take intramuscular injections of interferon on a regular basis and several pills a day to keep me up and going.  I’ve had rounds of chemotherapy and more intravenous sessions with high dose steroids (1200 mg/day) than I can count.

If I am careful and take my meds I can manage most of my  physical symptoms fairly well.  My cognitive dysfunction is another matter entirely.  For me, the most worrying and  debilitating aspect of MS has been the decrease in my brain’s ability to process information properly.  That, not physical limitations, is what forced me to leave my interesting and lucrative job.  I could no longer process information in a linear fashion which for a project manager in the financial services industry is a big liability.  Both project plans and financial statements became illegible to me.  They might as well have been written in Greek.  At the time I had an amazing ,brilliant, nurturing assistant who kept my head above water.  She should have been receiving half my salary.  When I could no longer organize things or keep information or appointments in my head she gave me notes, reminders and most importantly encouragement.  To this day I owe her a huge debt of gratitude.  Sometimes when I become too demanding of  David or T&T they remind me they are not Mary.

Recently, David has noticed, as have I, that my speech is slowing a bit and I seem to have more periods of confusion.  I do not go out alone for fear that I will be unable to find my way home. In my cooking class last week I kept losing my place, I forgot to turn off  burners, I became frightened and nervous. I wanted someone I could trust to be there with me.  Next time I will enroll with a patient friend. Fortunately David and I are best friends and typically make plans together. He seems to still enjoy being with me despite my limitations  and he is an  amazing man who helps more than any partner should be expected to.

 Tests before I left the US showed that my brain function had declined to 65% of what it had been in my prime.  My former boss said that just made me easier to take.  Apparently in the past when I reached conclusions before others in the room it could be annoying.  Imagine that.  I never was good at sitting on my hands and keeping my mouth shut.
That’s not really surprising. In high school I was obnoxious like that, always a step ahead, sometimes getting to the conclusion even faster than the teacher.  I thought I would live forever in a state of not fitting into the norm until I had the wonderful amazing experience of attending The Governor’s School of NC in the summer of 1971.  There I learned that there were lots of people out there a lot smarter and quicker than me but most of all that what I was capable of was not something I should try to overcome but something I should learn to utilize.  Now, I can’t keep up and it is driving me mad!

David’s oldest friend stutters.  When they are together and he gets stuck on a word David just says it and the conversation moves on as if nothing has happened.  Those years of practice are coming in handy.  Now when I can’t find a word in the rolodex in my brain, if David has been paying attention, he can often fill in the blank just as quickly as he does for his friend.

I know you are thinking that we all slow down and are more forgetful and such as we age and that is definitely true.  I do not want to belittle the difficulties that we all face after 50, but peeps, this is different.  I space out and can’t get the concentration back.  My brain just shorts out.  It is not just a brain fart or a senior moment, it is a periodic blackout.

But there is something I am finding even more distressing recently.  Before we left Florida I was diagnosed with pseudo-bulbar affect (Google it).  I thought it was one of those things invented by drug companies to sell a medicine that didn’t work out for its original function, but I was wrong.  This is the well-documented problem of emotional lability apparently repackaged to raise awareness that it crosses many neurological disorders and can be misdiagnosed as depression.  There is no treatment.  (Expletive!!!)

And for me it appears to be worsening and I am frightened.  I do not want to alienate people, embarrass myself or anyone else in public, or be carried away by men in white coats who have no idea that PBA exists.  You see, I will sit and stare into space until someone asks what I am thinking about.  I will stop in mid-sentence and then just not continue with whatever I was saying (those of you who have known me for years know this was an early sign - and you all just thought I was scatter brained).  My penchant for non-sequiter is a symptom.  My thanks to all of you who continue to try to carry on a logical conversation with me when I jump from subject to subject  for no apparent reason.

But the biggest problem is that I do not have control over my emotions.  I will cry for no apparent reason.  Not just little tears, but big gasping sobs. When I am angered my reaction is way over the top.  Poor Toby must think that his Mom is totally whacko when I completely over-react to what is a normal disagreement.  I yell.  I even scream sometimes.  If I am ready and you are late I can’t tolerate it.  No I am not just the world’s biggest bitch.  I cannot stop this.  Even when I know my actions are out of proportion with the situation it will not stop.  It happens with laughter too.  I’m too loud, carry a joke too far,  don’t understand.  My brain is on overload and just keeps on going.  And I am embarrassed. 

I feel myself retreating.  Surely those who have known me for ages will go, “Well that explains a lot.” and may still be willing to stick around.  But this shit makes making new friends a real challenge and when you move from place to place like we are, it becomes debilitating.

I have fought MS,  this ridiculous, unpredictable disease, with all I’ve got for 27 years. All in all I have won a lot of battles.  But this one is getting me. If this is “pseudo“- bulbar I’d hate to see actual bulbar.  This one is causing me to question what is next, what I can handle. This one has me listening to David when he suggests we buy a house in Maiden, just in case we need it.  I imagine the unspoken part of that is “just in case he needs some help with me.”  I need a new battle plan  and my MS fried, pseudo-bulbar affected  brain doesn’t seem capable of coming up with one.