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.
5 days ago