Voting, cognition, and Multiple Sclerosis

Oh, it is never boring voting with Patti. Her Multiple Sclerosis symptoms: legally blind, short term memory loss, cognitive impairment, and inability to modulate her voice volume can turn whispered assistance into … what I call ballot envy. Certainly “What the f#ck is a  prothonotary?” brought chuckles from way too many other voters.

coroner (vote for one)
Patti: “It’s a stupid idea.”
Patrick: “Stupid idea is not a choice, Democrat or Republican”
Patti: “Republican”
Patrick: “Why?”
Patti: (laughing) “They are probably better with dead people.”

Now way too many other voters are enjoying lingering and I am feeling like the straight man in a comedy routine.

Pennsylvania has no State Constitutional disqualification provision for citizens with cognitive or mental disabilities with or without assistance.

Sadly this is not true for citizens in half the United States. You can view your own State Laws Affecting the Voting Rights of People with Mental Disabilities

The National Network for Election Reform reports that beyond legal obstacles too often disabled voters encounter voting challenges, voting tests, and denial of effective assistance.

“Friends and fellow citizens: I stand before you tonight under indictment for the alleged crime of having voted.” Susan B Anthony

Poll workers often deny individuals the right to get assistance from a person of their choice and insist that an election worker(s) must assist the voter - so TRUE and our most uproarious and entertaining election memory. Voting & MS

Patti wants to vote at a polling station like everyone else, no absentee ballot alternative for her.

Pushing Patti toward the door we were surrounded by a dozen last minute campaign pitches and offered handshakes. One candidate simply opened the door for us, remarking “I thought you two might appreciate a hand.” … we thanked him with our two votes for school board.

Whether voting is a right, privilege, or responsibility or whether federal, state, or local it is what we do in spite of obstacles and enjoy!

By the way, Republican won Coroner, and door opener won School Board, so much for political science.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

disability history

History enriches people and nations. Disability also has history! Considering the obstacles, it is an extraordinary history!

It is no metaphor to say that today we are standing on the shoulders of giants.

181 years ago Rev. Gallaudet demonstrated education for all when the US House of Representatives adjourned for an “exhibition of deaf and dumb teachers and pupils”. Reading President John Quincy Adams' memoirs of that day, including questioning of students by Vice President John C. Calhoun on the “differences between power and right” is frankly captivating.

119 years ago consider assistive technology:

101 years ago the sound of a different drummer:

Disability history is told through personal letters, and articles as well as visual history such as photographs and lithographs. Two on-line friendly resources I have found are:

Disability History Museum Library

Museum of disABILITY History

70 years ago was the darkest chapter of disability history. NEVER FORGET Aktion T4: the Nazi extermination of 275,000 disabled adults and children deemed “unfit to live”. Additionally the “Law for the Prevention of Hereditarily Diseased Offspring” forced the sterilization of 360,000 people.

12 years ago the President Franklin Roosevelt Memorial was dedicated in Washington DC amid disability controversy. FDR’s reliance on a wheelchair was not publicized during his life, as there was a stigma of weakness and instability associated with any disability.

8 years ago, an additional statue funded by the National Organization on Disability was placed near the memorial entrance showing FDR seated in a wheelchair much like the one he actually used. … “It has awakened visitor's curiosity to learn more about President Franklin Roosevelt's disability and his great contributions to the country. A great majority of the visitors that come to the Memorial spend considerable time where the statue resides,” writes National Park Service Superintendent Arnold Goldstein.

"If you would understand anything, observe its beginning and its development." Aristotle

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

Safety nets, heroes, and heart

Safety nets are unraveling.

GOVERNMENT

 “the consequences are severe in many cases — for residents as well as the economy. … budget difficulties have led at least 41 states to reduce services to their residents, including their most vulnerable families and individuals. An Update on State Budget Cuts 

PRIVATE

72% of Americans say they cut back on time spent volunteering, participating in groups, and doing other civic activities in the past year while the economy was free-falling. America’s Civic Health Index 

We NEED Heroes … 

Biking 150 miles for a cause -- in a dress and heels 

We need HEART … 

“there is a silver lining, a ray of hope, a demonstration of America’s good heart … more personal forms of participation that often go unnoticed. … every bit as critical as activities such as charity walks and volunteering. 

Interestingly, people with the least means are giving the most. In the past year:

• 50% gave food or money to someone in need who is not a relative
  
• 43% gave food or money to someone in need who is a relative
  
• 17% allowed a relative to live in their home or on their property
  
• 11% allowed a non-relative to live in their home or on their property

Yes, the recession affects everyone. However those most vulnerable are affected exponentially.

What’s in your heart? 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

Speech & Voice Multiple Sclerosis

Multiple Sclerosis speech problems impact social functioning, no ifs ands or buts.

While pushing a laughing Patti in her wheelchair through our grocery store, her Multiple Sclerosis related Speech became stuck like a stylus on an old vinyl record “You’re a …” “You’re a …” “You’re a …”

Then in a volcanic explosion of decibels she shouts, “You’re a goober!” before dissolving into laughter.

Now a neurologist would charge you big bucks to tell you which Greek words apply above, dysarthrias, dysphasia, aphasia, dysphonia, or dysphagia.

I simply thanked Patti on the part of myself and everyone within hearing range.

What exactly is a goober? “How the f@ck should I know?” Patti offered.

MS Speech problems swing both ways, frustrating for the speaker, confusing for the listener.

MS Speech problems are all about short circuiting from myelin damage. Fatigue can affect and intermittent nature can make everyone nuts

People diagnosed with MS do not wear signs so ‘inquiring minds’ react from speculation to assumption as to why speech is challenged.

Listener assumptions can be as much of the problem as the speech challenges.

Slurred speech was the first speech symptom to appear in our story. Patti was ‘encouraged’ to go home from work one day decades ago in the dawn of living with Multiple Sclerosis as coworkers ‘assumed’ she was drunk.

Scanning speech / Long Pauses Do not ‘assume’ that someone has trouble understanding what you are saying or cannot find ‘the words’. This is about challenges with the physical process of speech.

Volume is particularly challenging for Patti. Appropriate levels can get interesting to say the least. (a church moment) 

MS related Emotional Lability plus Pseudobulbar Affect equals excessive emotional response plus anything might be said in any given situation. Patti for example becomes a ‘laugher’ at funerals.

Suggestions from two decades experience:

• Do not assume!
• Patience is support.
• Remember speaking can be frustrating and tiring.
• Be honest, not condescending, when you really have not understood something.
• Check ‘your’ self-conscious attitude at the door.

Urban Dictionary defines goober as a term of endearment, a kindhearted goofball.  … I’m honored!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

NEEDED: caring communities

Living with Multiple Sclerosis and MS caregiving can get overwhelming.

In my last entry (What if I’m not the legal caretaker?) one family’s story went tragically wrong.

Richie a MS caregiver blogging from the Netherlands, “A Place To Scream” commented

“sadly I can see how an individual gets overwhelmed … it is a hard life as a care giver and is more than one sad boy could manage- we need caring communities not over burdened individuals.”

Richie, you must have some powerful international mojo because yesterday I received a call from National Multiple Sclerosis Society - Central Pennsylvania Chapter about arranging a day of caring for Patti. Volunteers come to the home for a day of yard work, chores, etc.

“What a difference a day makes” program was debuted a month ago assisting Jay Megonnell in living with MS. United Way of the Capital Region-“Day Of Caring”

With Patti’s MS progression requiring residence in 24/7 assisted care this program is not for us. Yet it could be a godsend for so many living with MS and their caregivers.

If reading this through Patriot News bloglink or living in Central Pennsylvania Chapter area, call 1-800-227-2108, ask for Susan for information.

Pondering ‘caring communities’ and tinkering with Google Analytics I was stunned at the past month's readership of Caregivingly Yours.

Wow, I can still remember trying to create my first entry and wondering if anyone would even read or care.

I believe there are more caring people out there than it may seem.

'How to help' can be more of an obstacle than 'why'.

Related previous entries:

What can friends do to help someone who is a caregiver? (Pt 1)

What can friends do to help someone who is a caregiver? (Pt 2)

What can friends do to help someone who is a caregiver? (Pt 3) 

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

What if I'm not the legal caretaker?

“Police say 53-year-old Rosemary McCurdy died Dec. 26 after suffering facial burns from a "flash fire." The woman had Multiple Sclerosis and had been bedridden for five years.” Mom's cigarette ignites oxygen supply; son charged

“Police said the woman, who suffered from Multiple Sclerosis, … was laying in her own filth and had bed sores and was dehydrated. Police said it took five days for Victor McCurdy, 22, to finally take his mother to the hospital … Police said that through his negligence, the woman died. He is also charged with involuntary manslaughter.” Greensburg Man Charged With Negligence In Mom's Death

"McCurdy told investigators that he wanted to take his mother to the hospital the day she was burned, but she refused. … McCurdy added that his mother hated hospitals. …
     … A friend who was caring for Mrs. McCurdy stopped about two years ago … and blamed Victor's drug use as the reason … Victor McCurdy has a history of illegal drug use, according to court records.
     During his arraignment, McCurdy questioned the charges filed against him.
     "What if I'm not the legal caretaker of the person?" he asked Greensburg District Judge James Albert….”
Greensburg son charged with neglect in mom's death

Many more news stories like this and it could be time to consider homecare dangerous for your health.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer 

musings: Patrick Ponders ... 

a Zombie Zinfandel evening

Here in South Central Pennsylvania, small town Halloween parades abound this time of year. Nothing rivaling Macy’s Thanksgiving Day Parade, just small town life celebrating being alive. Fire trucks, high school marching bands, scouts, dance schools, classic cars decorated for Halloween, and costumes.

Calling ahead to Patti’s care facility, multiple aides with lifts kindly got Patti ready, changing and dressing her in outdoor clothing. Arriving with our wheelchair accessible van in addition to zipping Patti up in a winter coat, I pulled on a pair of leggings over Patti’s pants. A walking moving person generates more body heat than those who are wheelchair confined.

 

Being over 21, we added some Zombie Zinfandel to Patti’s wheelchair back pack.

At first it was like attending the parade with one of the two grumpy old men heckling muppets, as Patti intermittently shouted back expletives at cheering marchers. 

The toll of MS progression on the brain may explain some of this.Previously discussed in:

caregiving: “Hello! You little brat!”

cursing and swearing and Multiple Sclerosis, oh my

caregiving: Horton hears a *&#!

Fortunately once settled down or the Zombie Zin taking affect, Patti got into the festive spirit.

Our favorite part was costumed pets. What were their owners thinking? The piece de resistance was a Labrador costumed as a cow. You would think a faux cow doggie blanket and cow horns would be enough humiliation. Not so, below the dog hung a rubber cow udder. … Slinking along the parade perimeter with its head down in shame, the dog came over to Patti, laid its head on her lap, looked up at her with the saddest dog/cow eyes you have ever seen, and just drooled.

When we stopped laughing we agreed that was one dog that would need some serious therapy after the parade.

Fatigue is somewhat exponential with Multiple Sclerosis. And while the evening may have been short by most standards we packed it with good times, laughter, and a small town celebration of being alive and out.

Above all living with Multiple Sclerosis is about ‘living’.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...