media face of autism

Earlier this month I wrote an entry on the media face of Multiple Sclerosis and its impact on living with MS.

I found a similar concern written by Anne Dachel of Age of Autism, Autistic: Different vs. Disabled and Media Portrayal

... “I came across the story, "Being different: The marvels of the autistic world," … I thought immediately about the countless parents I know in the autism community.  Autism has destroyed their dreams, bankrupted their savings, and shattered their lives.  Who would dare to trivialize their suffering with a title like that? “ ...

  … There is a concerted effort by medical organizations and health officials to make all the sick kids the NEW NORMAL. … We're making autism into something acceptable, just a part of childhood ...

 ... What I see happening is one huge distortion of the term AUTISM.  Clearly, if we label enough people AUTISTIC, the word will lose all meaning ...

 ... The public is being led to believe that autism is something much different from what it really is.  Hidden from sight are the hundreds of thousands kids out there who are struggling with severe autism.  These are the children we never see in the news reports on autism awareness ...

 ... I've noticed over the years that the TV networks along with their big affiliates and major papers don't like to talk about approaching tidal wave of adult autism ...

   

Both Multiple Sclerosis and Autism have recently completed awareness campaigns, yet I would bet money that most Americans could tell you more about a US Congressman tweeting pictures of his body parts than what it is like to live with either diagnosis. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

MRI and Multiple Sclerosis

Multiple Sclerosis awareness can take many paths including ‘trivia’ and Facebook.  

The National Multiple Sclerosis Society--Central Pennsylvania Chapter - TUESDAY TRIVIA: What year was the first MRI brain scan performed? Where was it performed?

                      

XXXX I remember reading somewhere that the first MRI on a human was done in 1977 and took over 5 hours to get one picture. Not sure where or if it was done on the brain. May have to research that.

YYYY July 3 1977

XXXX I had the same date but wasnt sure if it was a brain MRI and had no idea where it was done. That's a tricky one.

Patrick Leer - No idea but Patti's first MRI was in 1985 and medical insurance would NOT pay because in those days it was not considered a diagnostic tool for MS even though the results led to the DX. Not only did we get a 'probable' MS DX but an out of pocket bill for, if memory serves me correct, around $850 in those days.

The National Multiple Sclerosis Society--Central Pennsylvania Chapter - This was a bit of a trick question! 1977 was the year the first MRI was ever done. However, the first MRI scans of people with MS were performed in 1981 by Dr. I R Young, in England. By 1984, it became apparent that MRI could actually see MS attacks within the brain, including many which did not cause any symptoms.

By 1988 sequential MRI scans changed the entire concept of MS by showing that it is a constant, ongoing disease even though relapses with symptoms may appear only sporadically.

The National Multiple Sclerosis Society--Central Pennsylvania Chapter Patrick - we've come quite a long way, huh?

Patrick Leer Thank you all this was an interesting perspective on timetable of medical technology and MS.

Previous "Tuesday Trivia" have included 'name one of the many symptoms associated with MS', 'name the first oral med used to treat relapsing MS approved by FDA' ... drop on in Tuesdays on Facebook at NMSS Central Penn.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

life expectancy facebook of multiple sclerosis

While Big Medicine offers statistics, in the 21^st Century people can communicate a bond of feelings about a shared anxiety of living with Multiple Sclerosis, life expectancy. (from a Facebook comment stream)                 

"my neurologist team are adamant that, while life expectancy is, at the moment anyway, reduced marginally, it will not kill you"

 "at our recent rally in Canada, a list of people who died of MS was read.... You see, people die of MS all of the time, and the complications it causes to long-term health.....if they didn`t have MS …they`d still be alive." 

"are we taking into account the amount of people who have died from taking meds to treat their MS, like Tysabri and now this new drug Fingolimod" 

"suicide and euthanasia rates are exponentially higher in the MS community than in the general population" 

"I was told MS is incurable, it is not fatal" 

"MS can kill, it does happen and we know it does. And it doesn't matter what the play on words is the truth is the primary illness caused the secondary.....and therefore death." 

"you dont die of MS but of complications. Think of it like HIV...no one dies of AIDS but complications from it." 

"I've lost 6 friends to MS already, some under 50, they died because they could no longer breathe or eat, so I think the neuros saying you die from 'complications from MS'... is a point that has always irritated me with neuros." 

"my first neuro said I had Marburg MS. That is a death sentence. … Thank God that neuro was wrong in my case" 

"this is what the MS Society says about life expectancy:"  

Life expectancy is the most understandable question with any incurable diagnosis, neither statistics nor smiley faces will chase the albatross away.

Living with Multiple Sclerosis is the original “it’s complicated” status. Perhaps the touch of family and friends can help tip expectancy from apprehension to hope. Answers are in hearts whether broken, brave, or caring.

Caregivingly Yours, Patrick Leer 
web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

knee contractures / newly diagnosed MS

We were out and about the other night enjoying a summer evening, due in large part to the ongoing success of Patti’s daily therapy for Multiple Sclerosis knee contractures. 

                          

Easier and safer one person transfers equal more outings plus prolonging my back is in both our best interests. When Patti can extend her legs during a transfer everything just comes together.

For whatever reason care facility staff and Patti have been into a groove about putting on the softpro static gel knee orthosis when Patti settles down for her afternoon nap. Sounds so simple yet like anything involving team work you can assemble a team but that does not mean they will accomplish anything.

Certified nursing assistants (CNA) assist Patti into bed. The licensed practical nurse (LPN) needs to put on the knee orthosis as it is ‘prescribed’ therapy.  And of course Patti who can have rather strong feelings about the knee orthosis as a royal pain in the ass. … for whatever reason they are clicking.

We encountered a young woman we knew, out with her two young children. Greetings and salutations froze on the summer breeze as she shared that she had just been diagnosed with Multiple Sclerosis.

Time just stopped.

“Couldn’t it be something else?” “Couldn’t they be wrong?”

We listened. We cared. We shared our time and ourselves.

Likely we were a better audience than most since we had no questions about ‘what is’ MS.

With Patti’s own MS diagnosis in long term memory, she participated in the conversation, even helping with the refreshing sound of laughter as they shared a laugh over “neurologists suck!” and the absence of social skills in rocking someone’s world with a diagnosis of MS then reminding them to make sure to stop at the receptionist to make your next appointment.  

As a MS caregiver for 20+ years my focus evolves with Patti’s MS progression. Yet for 200 people a week in the US the journey is just beginning.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

diagnosis sharing

Chatting on the phone, good naturedly ribbing a friend about dodging something planned for the immediate future I inadvertently boxed him into sharing a diagnosis of Amyotrophic Lateral Sclerosis (ALS). 

I hung on the other end of the phone in the loudest silence I have ever heard.

What insightful, thoughtful remark could I offer to break the silence? … “Can you still drive?”

Geesh! Where in left field did that question come from?

No wonder people facing a life altering diagnosis may choose to keep it to themselves for as long as they can. How many times a day can you play 20 questions?

May is ALS Awareness Month

One of the most frequent emails I get is from friends and families trying to ‘share’ the time following diagnosis of Multiple Sclerosis. Our story of Patti’s diagnosis of probable MS was explored in an earlier entry, “the call”. My father concealed his diagnosis of pancreatic cancer for the better part of a year. 

Diagnosis is so much more than a word.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer