Somehow I doubt the disease is changing, I suspect that frankness in discussing MS is changing. Of course with a 20+ year history of “living with MS”, we have the perspective of ‘tribal elders’
It seems to me that medical information is filtered to maximize hope. While well-intended, patronizing people and families facing challenges can create problems. In part this journal was created because we knew that too often MS progression was “forgotten” in mainstream MS publications. People and families just seemed to fade into silence.
A neurologist will drone on about how cognitive dysfunction symptoms can range from mild to Dementia. … Wait a minute - STOP! The word Dementia alone sends you directly to the ‘worry chest’ to search for the appropriate panic button, finally selecting the one labeled “freak out”. This, in turn, invites denial of early symptoms, especially if intermittent.
Reading this recent MS Connection article I couldn’t help but remember and reflect. Back in the “10% era” when Patti’s symptoms began I lost count of the number of times I was asked “Are they sure she has MS?”
One guaranteed "free" litmus test of cognitive dysfunction is when people stop asking you questions directly about your own health. <grin>
Like most people at the onset of cognitive dysfunction Patti was not even aware. How could she be? It is the fingerprints left by mysterious mistakes or faulty reasoning that tells the story.
To be continued …
(I’m working on a personal goal of word count in entries so this “thought” will have to be in two parts.)
okay, I have to ask, what is your personal goal of word count? How many words are you allowing yourself per entry? To a transcriptionist who gets paid by a 65 character line, we value all words used and used often. To read about someone trying to set a goal of perhaps limiting their word count sends shivers down our spine of doom and gloom of less productivity and thus less income.
ReplyDeleteI wish the medical community would realize that patients and family want to know what could happen and for them not to pad the numbers and speak of hope and mislead but rather give a true representation of what may or may not happen. I, for one, want to know the bitter truth no matter how bad it might be; a well educated consumer/patient in the end actually helps the medical community get a better grasp on disease progression, etc to help other patients down the road. (did this make sense?)
I remember years ago when my daughter was having what later were diagnosed as seizures, I remember her pediatrician asking us if the neurologist had mentioned the "e" word. When I looked at him in confusion, not knowing what the heck he was talking about, he said "epilepsy". I said that the neurologist called it a seizure disorder but I knew enough to realize a seizure disorder was also commonly known as epilepsy and being afraid to label was irrelevant; to me proper diagnosis and treatment were my main concern.
Looking forward to reading part two...........
betty (who is also wondering if you have a personal goal for word count for comments left because I tend to be verbose :)
You know when my sis was first diagonsed(sp) sorry i can't spell :) anyway she had horrible pain and the neurologist said MS patients don't have pain. she fought with him and years later she goes to see him and low and behold he has a pamplet that said 80% of patients have pain. she confronted him and she asked so You told me MS patients don't have pain he told her he was wrong its can be frustrating now she can't get the meds she needs because medicare won't pay
ReplyDeleteHave a good week
Deb
Hi,
ReplyDeleteBetty sent me over here to read your post because it echoed my own. I've been reading your posts and it gives me a whole new appreciation for my husband. I have had ALS for 16yrs and raised two girls as a single mom for 13 of those years. They said it was MS for the first four years and I was never told of "cognitive dysfunction." I use a walker and still drive but have speech problems. My husband of 2.5 yrs will retire at 50 next year and become a partial caregiver. We hope to gain knowledge on the "dance" from you and Patti :) I also read Christina's blog. Nice to meet you both!
Tammy
http://mylifeasawarrior.blogspot.com/
......read....interesting information.....why ..... talking..... word count? (....is it like saving water in the drought we are having?)
ReplyDeleteLike everyone else--I'm curious about the word count.
ReplyDeleteIt's amazing how medical information changes over time and how frequently important details are overlooked or left out.
Luckily I have an accupuncturist who is as honest and straightforward as they come and has been able to help me tremendously
...... your personal word count goal is used brilliantly in showing what I'd imagine many many would never think of, me included........If a sentence leaves you thinking, it's a good one to have read. Rache
ReplyDelete