A little peek at a little MS Madness!
As the writer I claim to be, I could lie and make up some brilliant excuse as to why today’s blog is not as creative as I usually try to make it.
I could write that I am in Paris being wined and dined by a handsome stranger.
Or I could write that I am at Keith Richards’ Jamaican villa, lying in a hammock and looking at the crystal blue water while he writes new music nearby.
Maybe, I might scribe, I was abducted by aliens, for real this time, and they haven’t brought me back to Earth yet.
But the truth of the matter is that I am just tired; really tired. I am so tired, that miraculously, MS hasn’t given me anything new to write about this week.
And, if truth be told, I am still trying to sell a book or two and thought maybe today, I might just entice you with a look at an excerpt from MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis.
Since my brain is so tired, I thought the excerpt I would share should appropriately be from a chapter called Cognitive/Schmognitive which details brain cog fog and specifically, my first neuropsychological evaluation.
(Try saying that five times fast. If you can, you don’t need a neuropsychological evaluation.)
If you like this excerpt and would like to get your own copy, you can buy one where all other amazing literary tomes are sold; except maybe mega brick and mortar stores as they don’t quite love MS Madness yet. But maybe if you request it……
Thank you friends! And remember, a portion of the proceeds from each sale of MS Madness goes to non-profit agencies searching for a cure for multiple sclerosis or non-profit agencies that help those living with chronic illness.
Have a restful weekend.
“…….The doctor introduced me to her assistant and we started the process. After some brief questions she showed me a drawing and asked me to write in paragraph form what I saw. I thought this was likely a simple exercise to show off my most basic grammar and spelling skills. I had just told her the only career path I could conceive of was becoming a writer. I had to prove that it was at least a possibility. I asked how much time I had. She told me to take all the time I wanted. Did that mean the entire four hours? I think she was expecting a basic description of woman doing this, child doing that, etc. But I saw a whole story in the drawing and wrote it, complete with a dramatic subplot and a commentary on the decline of a simple moral compass in current technology dependent middle class America. Eventually the doctor asked me to stop. Her report on the testing noted: “narrative handwriting sample was creative in content.” Perhaps I should have asked for it back to see if I could publish it. I needed the money, after all.
From there, things went downhill. Her assistant took me into this tiny room where she proceeded to have me memorize, spell, associate words, disassociate words, dissect words, add, subtract, remember, repeat and any other thing you can possibly do to someone’s brain. Slowly my head began to expand. Just remembering the test is bringing the awful headache back. The final report shows I tested pretty well but it didn’t seem so at the time. At one point, I could not tell the assistant the name of our president. Instead, I said, ‘I can’t believe this, I love him. I voted for him. I can see him in front of me and can see his family. He has a weird name but is a good guy.’ My Republican friends said that this memory loss was because my brain was blocking out disturbing thoughts.
The part of the test I did the worst on was identifying something missing from a picture. Maybe it was the artist in me altering common perceptions, but they would show me a picture and ask me what was left out. I couldn’t tell them and would say, ‘nothing, everything is there.’ The assistant would insist something was definitely missing. Then, to make her happy, I would make something up. If it was a picture of a puppy, I would say a little boy. Every puppy needs a little boy to hang out with. And the assistant would begin writing in her notepad. One picture was of a leaf, what could possibly be missing from a picture of a leaf? A leaf was a leaf. But the assistant would state ‘No, something was definitely missing,’ and we would start all over again.
One picture was of a mother and son walking on the beach. I grew up on Cape Cod. If something was missing from a beach picture I should have known what it was. I kept guessing—a fishing boat, tourists, whales, a keg of beer, sandcastles, nude sunbathers, seaweed, litter, suntan lotion, a cooler, shells, keep off the dunes signs, Jaws, park rangers. The assistant scribbled away………………….
Three weeks later the doctor called and said she had the test results. She told me the MS had caused my brain to slow down a bit. She compared it to her elderly father who didn’t have dementia, but whom she had to speak to slowly so that he would better understand her when she was telling him something. She said my brain was like that, an old man’s. She also told me that I should accept that my multi-tasking skills, skills I once prided myself on, were pretty much shot. I would now have to realize it might take me longer to process things, especially since the test was done in a controlled environment. Exhaustion, stress, and noise would likely increase my symptoms. She recommended that I visit a vocational specialist, whatever that was, and that I only work part time. She wouldn’t tell me what was missing from the beach picture as she said someday I may need to do the test again.
The breakdown of the test results seemed to be that cognitively, I wasn’t a total mess—I was just an old man. Good to know.”
*********Super top secret information just for you- more excerpts from MS Madness! are included in the BOOK tab of this website*******************
Pretty good stuff. I’m chicken to have that test done. Went to the Neuro this week & wanted to ask about Alzheimer’s /dementia while there but forgot to ask 🙂 Again that’s a pretty good subject to speak on, Thanks
Hi Diane-thank you! Before I was diagnosed I was worried that I had early onset Alzheimer’s. The MS diagnosis was almost a relief. The cog fog can so look like that so try not too worry too much but it is always crucial to talk to your doctor. The test wasn’t hard, just long and exhausting and came with a killer headache.
Old man brain or not you better be ready to shake your ass on the dance floor at our wedding and yes the Rolling Stones are on the playlist…
Excellent! If the Stones are there, how can I not???
PS- do you think there will be any old men there for me to dance with???
Oh my gosh, what an entertaining account of your neuropsych eval! Not to mention, spot-on! I really detested that exam, as well — surely waterboarding couldn’t be more torturous! My nemesis was the jigsaw puzzle component … were those puzzles part of your evaluation? I felt like a kindergartner trying to piece together what seemed like a trivial puzzle! And like you, my examiner wouldn’t tell me what the answer was, even after the test was over. I thought about those darned puzzles for weeks after the evaluation, trying to remember what the pieces looked like that seemed like leftover parts, trying to solve the puzzle in my head, and nearly drove myself batty thinking about it! Thanks for your humorous yet informative post!! (more on my own cog eval, but not nearly as funny, at http://stargzrblog.wordpress.com)/tag/cognitive-testing/)
Thank you so much!!! Isn’t it funny how the little things can drive us nuts? I’m still going crazy about that beach scene and it has been years! So glad you checked out my blog and I can’t wait to check out yours as well. I will do it right now. Have to warn you though that my own cog fog will not allow me to comment on other wordpress blogs. I follow many of them but when I go to comment, wordpress tells me my ID is wrong and won’t allow me to post. Don’t know what’s up with that so if you don’t hear from me, please know that it isn’t because I don’t want to tell you how much I am sure I will enjoy your blog. It is because my MS brain is too fogged to figure out how too!
Very funny account, but sort of scary too. Those of us with MS can relate to the cog-fog. Lying in a hammock with Keith Richards nearby frightens me more!
LOL My Odd Sock!!! What’s so scary about hanging out with Keith? He would make sure you were too inebriated to be afraid of anything!!!
A childhood friend from the Cape sent me “MS Madness” as an encouragement after my dad, 92, passed aways. I was encouraged and had some great laughs from the book. I had cared for Dad & Mom a year before diagnosed with MS and at the time thought their old-age dementia and thinking were “catching”. Now I know that it was a symptom of the MS which the “all-knowing” doc thought I was too old to have (I was 63). Love your book & so thankful my friend sent it!!
Thank you so much Audrey- I really appreciate that! I am very sorry for your loss though and am wishing you the very best. May all of your memories, especially the amusing ones, comfort you.
Thank you, Yvonne. I do have lots of funny memories of Dad. He made everyone smile, especially me! His dementia left him unable to remember 8 seconds ago but his long-term memory of 80 years ago was well intact and his sense of humor never left him.
I just wrote to a second-cousin of mine who has MS and encouraged her to read your book & blog.
Thank you so much Audrey! And I think it says a lot that your dad was able to keep his sense of humor. I believe the ability to laugh or even smile is crucial to our overall well being…And it is way more fun than medicine and healthy diets!
Amen, Sister!
Enjoyed your blog, especially because it is by someone who can understand MS brain fog. If I had a nickel for every time I have heard “oh, I do that too” and dismiss my brain problems I’d be a rich woman! I also had a neuro-pysch test and passed it with flying colors except for being a bit slow on the memory part. If my life was lived in a totally quiet room with one calm person and all the time in the world to answer questions it would go a lot smoother! That’s not when I have problems!! Throw in phones ringing, people asking questions, doorbells ringing, food on the stove, grandkids running around, the TV on, and a time limit -THAT’S when problems arise! My situation does not have to be that chaotic to cause problems but a quiet room with a calm person is actually pretty nice! I knew it would not show them a true picture of where I have problems and it didn’t. So I will not share with non-MS people anymore, but read blogs of those those MS’rs I can relate to!
Thank you so much Gail!!! Both for checking out my blog and for your spot on comment! This particular blog didn’t address all those other elements that are such a part of life and add to the extreme chaos in our brain. That’s one of the frustrations for people like you and me that the non-MS world does not understand. We might do better if we could shut off life but you can exist in the world if you shut off life. Does that make any sense? It is the morning after shot day and my brain fog is starting to settle in! My other issue is the fatigue. When I am particularly fatigued the brain fog greatly increases. It is just a vicious, explainable cycle. Then throw in decisions and even something as simple as “do you want me to call you back?” becomes impossible to answer. It helps when other people with MS say they understand because they are the ones that truly do! Hope you have a great, clear headed day and visit my blog again!!