Thursday, April 9, 2015

Cognitive Improvements, Yes, That's Happening!

I was asked about cognitive improvements by a fellow MSer on the UK site- I highly recommend this site for general support and a positive MS community. The creaters also make short films about MS which are though provoking and have the signature British Humor. Check out Shift.MS if you have not already.

Anyway, this question of cognitive issues post-Lemtrada made me stop and think about the issue. If you do not have this symptom count yourself among the lucky. The type of cognitive impairment MS causes can be quite debilitating and embarrassing.

Some symptoms:
Forgetting common words in the course of a conversation- so common you feel like the village idiot
Inability to retain numbers in your head
    This was especially hard for me as my job requires manipulation of lots of numbers
    I could not calculate a number in my head, and I had to use a calculator for the most basic tasks
    Then if I did a calculation and came up with a number like 216.32 I could not hold this in my
           brain long enough to enter the # in the appropriate place, so everything must be written down.
I lost the ability to remember a plot in a book from start to finish
I could not remember sub-plots or characters in TV drama shows from one week to the next
I love American football but lost the ability to remember who won what game from one week
            to the next- embarrassing as I watched the entire game...

With these symptoms comes HUGE doubts in yourself and your ability. For me personally this lead to retiring from my job as a Nurse Practitioner (serving adults with HIV) very early on in my diagnosis. I was terrified of missing a possible drug interaction when prescribing complicated drug regimens.

It seemed my ability to store new information was affected the most.

These deficits also put the person at huge risk of being taken advantage of. I felt I needed to tell people that my memory was bad so that I did not offend if I forgot a name or even an entire event. But then if I were to tell a story and someone remembered it differently I felt I always had to defer to their version and trust them. For example, you agree upon a price for a service or 'remember' you prepaid- and someone challenges you- what do you do?

I had learned to live with this and joke about it as a coping mechanism. My memory was a running joke among family and friends and I tried to just go with it. Being so unsure of 'truth' and 'reality' is a very strange way to live.

Good News

Against all odds- this symptom started to improve with time!

Again, this is a symptom I never thought could improve. It struck me early and so had been present and worsening for at least 7 years by the time I was given Lemtrada.

The first thing I noticed was work- I started to retain those numbers between the calculator and the spreadsheet. At first I thought it was just 'a good day' but then this started to feel more permanent.

Then I began to attempt 'math in my head' and as I challenged myself I was able to do this too- although it took me a long time to trust myself (for business purposes I could not afford mistakes). But soon the checking and double checking receded and I gained confidence in my ability with numbers.

For the fall TV & Sports line up- I had a plan. I was going to keep all my 'favorite shows' on my DVR so when a new episode came out I could watch the previous ones to remind myself. When it got around to fall (Lem infusion was April 2014) I found I didn't need my plan! I started to remember details!

I have even contemplated re-training as a Nurse Practitioner although my home job is quite cushy- but the point is- I feel ABLE to do so!

Cognitive improvement really affects your whole life. I feel more confident, happy and 'settled' in social conversations and business life. I am building new memories and now even able to remember more than my husband in many occasions. I think this is due to the many 'tricks' I developed over this period to help me through.

I am unsure if I will regain the memories I was unable to store for those 7 years. I suspect not, but who knows really. If this was a problem of laying down new memories all those years the opportunity to store them may be lost- but the future is so bright! I would say I have to wear shades- but due to Lemtrada my pupils are now constricting for the first time in 15 years :)

I am forever thankful to the German people (Dr. Ziemssen & nurse Teresa in particular, the research scientists and medical funding to bring this amazing treatment to life for MS patients world wide. So far I have not found one area of my life that Lemtrada has not made some significant improvement.