Thursday, October 29, 2009

Safety nets, heroes, and heart

Safety nets are unraveling.

 “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 

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 … 

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:

musings: Patrick Ponders ... 

Monday, October 26, 2009

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:

musings: Patrick Ponders ... 

Thursday, October 22, 2009

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 3) 

Caregivingly Yours, Patrick Leer
web site:

musings: Patrick Ponders ... 

Thursday, October 15, 2009

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:

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:
musings: Patrick Ponders ...

Monday, October 12, 2009

medical marijuana multiple sclerosis

Cannabis use has been around since the Stone Age (no pun intended) for everything from fiber to recreation to spiritual to medicinal purposes.

So why in this 21st Century when people who are suffering reach out for pain relief and help are governments acting so inconsistently.

Canada, Austria, Germany, the Netherlands, Spain, Israel, Finland, and Portugal are among nations that use cannabis in medicine.

Here in the United States, almost a quarter of the population live in States that have approved medical use of marijuana, but the Federal government interferes and denies by bullying. What ever happened to States rights much less ‘we the people’ caring?

Within the US Multiple Sclerosis community the National Multiple Sclerosis Society seems to have its head in the sand.

“it is the opinion of the National Multiple Sclerosis Society's Medical Advisory Board that there are currently insufficient data to recommend marijuana or its derivatives …” NMSS: Marijuana (Cannabis) 
On the other hand with their heads in peaking fall foliage, out of Maine comes this story. 

“Since 1999, 23 studies have appeared in peer-reviewed journals demonstrating the efficacy of marijuana as a treatment … Without a doubt, this is a medicine that can greatly improve the quality of life of extremely sick people.” Qualified patients need safe way to obtain medical marijuana
Montel Williams who actually lives with MS pain admittedly uses and lobbies for medical marijuana.

The National Institutes of Health (NIH) is funding current Temple University research.
“This is a totally new approach to treating this disease, ... These cannabinoids hold enormous potential …”

Should a political border determine who has access to what pain relief? … In 1995 Health Canada approved the prescription use of Sativex® a cannabinoid oral spray for the treatment of MS-associated pain.

Recently a dear friend with both RN and PhD following her name asked me to share a site, Patients Out Of Time Cannabis As Medicine.

When I asked Patti about how she felt about medical use of marijuana, she simply fixed me with a look like which one of us is cognitively impaired here. 

UPDATED 10/19/2009 ...
FROM: David W. Ogden, Deputy Attorney General
"...This memorandum provides clarification and guidance to federal prosecutors ... pursuit ... should not focus federal resources in your States on individuals whose actions are in clear and unambiguous compliance with existing state laws providing for the medical use of marijuana...."

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ... 

Friday, October 09, 2009

Stock Market & Multiple Sclerosis

If you or I sold something that was not what it was supposed to be, what would happen to us?

Yet for players in the Multiple Sclerosis stock market, money can be made win, loose or draw.

It makes you wonder …

Not long ago Acorda sold “overseas” rights:
“… Acorda has had operating losses since inception … In order to sustain operations beyond 2010, Acorda sold overseas rights to Fampridine SR to Biogen Idec Inc. in July of this year and received an upfront payment of $110 million …” (Will Acorda Walk The Talk?)

Today it seems to be abandon ship:
“ … Food and Drug Administration issued a negative opinion that questioned the safety and effectiveness of the company's multiple sclerosis drug...." (Fampridine-SR) Acorda shares plunge on negative FDA review

Does it seem to anyone else that too much Multiple Sclerosis news is reported by the financial media?

... UPDATED 10/15
"Acorda Therapeutics received the support of a Food and Drug Administration panel for its multiple sclerosis drug, increasing confidence in the drug's approval and sending shares up 53%..."Acorda Shares Rise On FDA Panel Vote Supporting MS Drug

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Wednesday, October 07, 2009

Multiple Sklerose

Germany not only ranks 4th in readership of this journal but is part of our story of living with Multiple Sclerosis (Multiple Sklerose).

In the early 1990’s Patti was treated at the Nieper Clinic in Hannover, Germany.

Alternative vs traditional treatments for Multiple Sclerosis are always debatable. Yet the only point of view that mattered was that Patti left the US in a wheelchair and returned from Germany walking.

Nieper’s Calcium-EAP treatment had no better or worse results than conventional treatments, MS progressed.

Later in the 1990’s it was a pioneering trial in Germany of Avonex for progressive type Multiple Sclerosis that led to Patti’s approval by her medical insurance to try Avonex.

Eventually no better or worse than anything else, conventional or alternative, medical insurance pulled the plug on Avonex payments as MS progressed.

Previously I’ve mentioned a German company, cadKat, that ‘empowers’ accessibility with their EuroTrax balloon wheels.

In the bigger picture … While we are suddenly yelling at each other over health care reform, Germany has lived health care reform on an epic scale beginning with German Unity in 1990. Their answers may not be ours, but they have done a lot more than talk. Spending on health care consumes 10% of Germany’s gross domestic product contrasted to 16% in the US.

From the Philadelphia Inquirer:

“I was in an American hospital's emergency room only once, … the first thing asked by the hospital staff wasn't how he was doing. It was how he intended to pay.

For me, as a German, this was a culture shock.”
Multiple Sclerosis is a world wide challenge and no one country has a lock on solutions. Hope is always about looking outside your box.

For more information on Multiple Sclerosis in Germany: Deutsche Multiple Sklerose Gesellschaft.

Also …

Meine Familie lebte in die Amerikanische Siedlung von Bad Vilbel, Deutschland, zwischen 1963 bis 1965. (My family lived in an ‘American neighborhood’ of Bad Vilbel, Germany, between 1963 through 1965.)

In this technology age, to reminisce is only a click away.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

Tuesday, October 06, 2009

a MS caregivng whatdunit

Mix intermittent pain with Multiple Sclerosis related memory loss and mental confusion and you get a genuine whodunit or better yet, whatdunit.

Two weekends ago, a week in the life of caregiving, I mentioned intermittent pain in Patti’s left arm.

Examination of the arm by nursing staff and physical therapist found no range of motion problems nor did Patti report any pain.

As an advocate you must do more than monitor a ‘whatdunit’. You must inject yourself IN the mystery.

Whenever I put her jacket on or off, I did so at the nurses’ station so any and all ‘intermittent’ incidents of pain were witnessed and logged.

When Patti’s physician visited she attempted to replicate the problem with no success. Fortunately, there was a file of witnessed episodes, and X-rays were ordered.

No fractures were found, though the x-ray analysis somewhat distractingly reported evidence of osteoporosis.

When a patient is unable to direct their own medical care the ‘advocate’ must help keep the focus.

Patti was next referred to an orthopedic specialist.

To ensure communication I transported and accompanied Patti to her appointment. Her examination revealed nothing nor did Patti complain of any pain.

Before tearing my hair out, I suggested a demonstration … Patti yelped and grabbed her arm as soon as I slid on the left arm of her jacket.

Re-focusing his examination on where she grabbed her arm …

Ortho: “Patti, let me know if this hurts?”
Patti: (yelp) “If you do that again, I am going to kick your f#@king ass!”
Ortho: “in other words, yes”
… he found a tender “extension mass” in her left elbow.

Diagnosis = tendonitis.

Extension injuries, we learned, are not uncommon to elbows and wrists for people in wheelchairs.

1) tennis elbow strap
2) intermittent analgesics
3) physical therapy

As for osteoporosis, he did NOT agree with the portable x-ray analysis.

As for Patti all she wanted after that appointment was a ciggie, ‘analgesics’, and a mid-day nap.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...

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