Married to the MonSter

I have always thought that what is happening to my husband is rare, that most people with MS do not have this type of cognitive impairment.  The other people I know with MS have a greater level of physical disability but mentally still seem quite sharp.  So I typed this line into a search engine “dementia secondary to MS” and I come up with a great deal of fun (NOT) stuff to read.

This article is very much a research/academic and in places a bit over my head BUT the following things caught my attention:

Cognitive impairment substantially impacts the lives of patients with MS and their families. Half to three-quarters of people with MS are unemployed within 10 years of diagnosis. Cognitive impairment is the leading predictor of occupational disability, while physical disability, age, sex, and education contribute less than 15 percent to the likelihood of being employed.5 Patients with impaired cognition participate in social activities less frequently. Cognitive impairment due to MS may also place significant additional strain on the patient’s caregiver, who must help the patient combat intellectual, social, and occupational disabilities.

But it then goes on to say:

Overt dementia in MS is rare. Most cases of cognitive impairment in MS are relatively less severe than those observed in classically dementing neurological disorders, such as Alzheimer’s disease, in which the patient loses memory of previous experiences and is unable to respond properly to environmental stimuli. However, cognitive impairment in MS can be extremely debilitating, with substantial negative impacts on daily living.

So okay in the truest sense he does not forget who he is, who I am, where we live, etc.  But he does forget to eat. He forgets to shower.  He never knows what day it is.  He makes decisions like a toddler, impulsive and often dangerous. His doctors do call it dementia secondary to MS but maybe that is not a true description of his ailment.

Interesting reading anyway, and it seems that it affects far more MS patients that I originally thought.

Want to read the whole article?  You can find it here –> Cognitive Impairment in Multiple Sclerosis
A Forgotten Disability Remembered

While these authors thought dementia was the wrong word for MS the very next article I read had the exact opposite opinion.  I guess such is the nature of academia and research studies.  This doctor from Europe has this to say:

“I therefor propose rebranding MS as a progressive dementia, which in reality it is. People with MS don’t know it, but they have a dementing illness. The good news is that unlike Alzheimer’s and other dementias we have treatments for MS that could prevent, slow down, or stop the dementia. That is something we need to focus on. My colleagues in the fields of Alzheimer’s and Parkinson’s disease are envious of the progress we have made in MS. Are you surprised?”

“The following is a standard definition of dementia and I challenge anybody to prove  to me that MS as a progressive disease doesn’t fulfill this definition.”

Definition of dementia:Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness

“I think people, including the EMA, may view early effective treatment strategies very differently if they viewed MS as a progressive dementia. Why do you think 50% of MSers are unemployed within 10 years of disease onset? Why do you think 50% of MSers are unemployed at an EDSS of 3.5; a level of disability that is not associated with physically disability? Why do 50% of CISers have cognitive impairment at presentation? Why do CISers, RRMSers, SPMSers and PPMSers have the same rate of brain atrophy? The answer is simple; MS is a dementing illness and it is time to do something about it.”

“We need to reposition the early effective treatment strategy as a preventative treatment; i.e. to prevent permanent cognitive impairment and progressive MS. Scientists in the Alzheimer’s field know that it is too late to treat Alzheimer’s disease once you become symptomatic; you need to treat Alzheimer’s in the presymptomatic phase of  the disease, before your cognitive functioning is impaired to such an extent that it impacts on your quality of life and activities of daily living. Why should our strategy in MS be any different?”

Far too late for my husband BUT yes – why was it he had to try every single ineffective treatment before they finally got him one that seemed to work?  Because insurance won’t pay to jump right to the more expensive treatments.  Also for him the one that worked was not yet available to prescribe when he was first diagnosed.  But if it had been and he was started on Tysabri right away?  Well things might be very different now.

Want to read the entire blog post above?  You can find it here –> Rebranding MS as Dementia

I’m going to keep reading if this topic interests you try a google search of your own and you will find much to read.