VOTE!!! - Election Day 2004

"To make democracy work,

we must be a nation of participants,

not simply observers.

One who does not vote

has no right to complain".

— Louis L'Amour

Surviving Christmas

Living with MS and family time takes commitment and effort. As Patti has progressed we have to adapt activities to be inclusive.

 

Movies for example are especially fun outings to Patti. While Hollywood magic is fun for most people it is particularly appealing to Patti in light of many of her MS symptoms.

 

Visual impairment – She can actually SEE what is happening because of the mega screen size. To those of us who are not ‘legally blind’ and take vision for granted to be able to experience the visual aspects for a couple hours is a major treat!

 

Mental confusion – We have to pick a film that is light almost screwball in plot. Patti cannot ‘remember’ plot details as it plays out or character development. Suspense or twist endings are lost on her. When we involve Patti we keep the films fun for her.

 

Escape – When the lights go down and the screen whisks you off into the film, everyone in the theatre is the same. There are no wheelchairs; there is no MS for a couple hours. Just popcorn, candy, soda and magic.

 

Even though yesterday was Halloween we got a jump start on Christmas. <grin> We saw “Surviving Christmas”. Patti chuckled, cackled, and laughed her way through a bag of popcorn and two wacky hours of a Christmas comedy.

 

It’s somewhat weird but Patti always seems to get a positive bump in her health after a good time. Much has been debated about the placebo effect, or the effect of laughter. Yet when Patti has a fun couple of hours she seems “better” for a couple hours afterwards.

time to fade out

         

Time to fade out the Halloween lighting and decorations. Of course, that only begins the BEST time of year, time to dig out and start putting up the Christmas displays. Which means SNOW can’t be too far away! YEAH BABY!!! BRING IT ON!!!!

Trick or Treat

Living with MS does not have to be boring.

 

          "Boys and girls of every age

           Wouldn't you like to see

                something strange?

           Come with us and you will see

           This, our town of Halloween"

     “This is Halloween” by Danny Elfman

 

Friday evening was “Trick or Treat” at Patti’s 24/7 care facility. Halloween has always been SPECIAL to us.

Is it live? or is it ...

Living with MS means some days have little or nothing to do with MS. That’s a most important truth which I also noticed stressed recently in someone’s journal.

 

Today is one of those days. Parenting a teenager is what today is about.

 

Our daughter’s high school had previously “won” a free afternoon concert for today featuring Ashlee Simpson from a MTV Rock the Vote campaign. Shortened class schedules and an afternoon off rocking out in the gym was excuse enough for excitement. Throw in MTV cameras, celebrities, and media attention and teen pop culture doesn’t get much better.

 

Unless ... that same performer ‘gets caught lip synching’ on Saturday Night Live this past weekend. Resulting main stream media attention has notoriously skyrocketed Ashlee Simpson's status in pop culture. <grin>

 

To finish off the day, it’s designated “Trick or Treat” night in the local communities. Costumed characters will stalk the neighborhood homes for candy under a full moon on a forecasted perfect October evening.

 

Half a day off from school work to celebrate teen pop culture and then finish it off with a total sugar experience to celebrate youth … how can it not be a good day? <Grin>

opposite directions?

 Megan and I stopped by to visit Patti last evening only to find her lights out and pleasantly tucked into bed at 6:30 PM. MS fatigue is that one symptom that trumps all.

The 24/7 care facility era is becoming more challenging trying to coordinate some time between Patti and a high school age daughter. After school activities, homework, and dinner vs. Patti’s ever earlier bed times do seem to be going in opposite directions.  

                                                                                                       

swing used to be a dance

Will you people in non-swing States PLEASE start answering polling questions differently or something? <grin> HELP your fellow Americans! Lure these two characters away. Start a rumor or something like 20% of the voters in (pick a State) woke up undecided! Anything to draw them away ... HELP! 

Rowdy Customers In Wheelchairs

Visiting with Patti last night I believed she had been “voluntarily quarantined” in her room over the weekend with a cold.

Of course the first person I ask is the receptionist who looks at me as if I’m speaking Greek. Then after a moment, ‘Why Patti has been down to the lobby to visit me every evening, is that why she hasn’t been down tonight?” I could only offer “Never mind”, smile, and shake my head.

The strength of a care facility is its three shifts of staff for 24/7 care yet that is also its inherent weakness, as it takes constant communication between all those people. Plus residents cannot be restrained nor made to do anything against their will, and in Patti’s particular case she isn’t going to remember any “request” to comply with anything. <grin>

Apparently, at least one shift nurse over the weekend decided Patti had a cold and was trying to voluntarily keep her in her room. Patti had no idea what I was talking about, and after asking another worker who also looked at me as if I was an alien, I gave up the query and just visited. <grin>

Watching TV news with Patti I was surprised at apparent deterioration of “long term” memory. In discussing Chief Justice Rehnquist story I asked Patti if she remembered her thyroid surgery. (Patti did not have thyroid cancer like Rehnquist but instead Grave’s Disease and her thyroid was removed pre-MS.) After much prompting she finally showed some recognition, I think. It was odd in that while short term memory has been terrible due to MS, Patti’s long term memory has been strong. This was first episode of an event of long term memory problems that I am aware of.

We did share a good laugh over a story our daughter had found in the local newspaper regarding “Rowdy Customers In Wheelchairs”!  Police had been called to a local Wal-Mart store to quell a disturbance caused by a group of customers in wheelchairs roaming the isles throwing items at each other, laughing loudly, and believed to be intoxicated.. … Needless to say the story struck Patti’s fancy and she fell apart into laughter and wishing she had been there. Not only was Patti’s laughter infectious but the story certainly had a surreal appeal. Accessibility has come a long way. <grin>  

flu shot or no flu shot

The flu shot story hit home today when I learned that Patti and other residents HAD NOT been vaccinated against the flu.

 

The following is from facility Director of Nursing. “… My order was placed back in April and confirmed at that time.  The pneumonia vaccines were administered in August... The flu vaccine, however, is another story.  While our order was confirmed, no one could have foreseen the shortage created by Chiron failing the quality control checks.  Aventis Pharmaceuticals was in place to handle the remaining 40% of vaccines to be distributed, and now that 40% has to be distributed to 100% of the population requesting.  We have yet to receive any vaccine and have no indication of when we will receive any, or of how much we will get.  The CDC is working on this as well to attempt to divert the limited number of available vaccine to those who are at greatest risk. …”

          ............................................................................................

Health secretary: No flu vaccine crisis

(CNN) -- The shortage of flu vaccine inthe United States is "not a health crisis," Health and Human Services Secretary Tommy Thompson said, urging people to be patient as the government works to reallocate the nation's limited number of vaccines. …

 

… The secretary urged people "to be calm, and if there are lines, don't wait." … "Come back another day, and if the individual clinics or nursing homes don't have the vaccine right now, let us know," Thompson said.

 

… Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention, said it's too soon to tell if there will be a flu crisis this year.

          ..........................................................................................

 

Historically, Patti’s flu vaccinations have been inconsistent to say the least even when available. Too often simply the demands of juggling home caregiving, or flares and or exacerbations of MS have created enough obstacles that it is too late before we ever could get around to getting Patti in for a shot anyway.  While in my years as her spouse/caregiver she has NEVER had the flu; of course, MS is an immune system disease and ‘at risk’.

 

It's enough to make you batty and 'living with MS' has enough challenges.

At last it dawned on me ...

Currently listening to a James Patterson audio book while driving around I was struck by a passage I’ve rewinded and rewinded and replayed over and over:

"For a long time it had seemed to me that life was about to begin—real life. But there was always some obstacle in the way, something to be got through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life."

Searching for Multiple Sclerosis or Caregiving Revisited

After “searching” AOL Journals for either Multiple Sclerosis or Caregiving, back on October 8th, I posted the following entry . (You can access the original posting through this link: SEARCHING for Multiple Sclerosis or Caregiving.) 

While I noted the few journals available from my research I forgot to actually post those journals. (Maybe Patti’s memory problems are contagious?)  Following the picture you will find the few active AOL Journals available for either Multiple Sclerosis or Caregiving, at least that I came across.

         

MULTIPLE SCLEROSIS:

my journey with Multiple Sclerosis

Multiple Sclerosis and me!!!

Debbie Couch and my hole

 

CAREGIVING: (only the first two specifically deal with MS)

Caregivingly Yours,

Mike's Journal

A day in my life....

Libby and Jerry

A Day In The Life

A Day In The Life

... up, cleaned and dressed by staff for breakfast.

... prayer gathering/ Bible Study

... roll across facility to visit and hang out at hair salon

... Depends change and clean up by staff

... lunch

... clothing change by staff  

... visit by cousin and aunt. Out for ride and treats.

... bingo

... Depends change and clean up by staff

... physical therapy

... social time / hanging out in common area

... 4 PM picked up / home for dinner

... quick stop at grocery store with Patti, something she seems to enjoy these days.

Nothing takes the edge off a drizzly October day/evening for either people or cats than some quality time in front of the fire.

              

I’ve often referred to Patti’s problems with choking and need to prepare and monitor meals. The chocolate cream pie dessert needed no cutting into small pieces <grin> of course you still have to slow down Patti’s inhalation of such a treat.

... then back to 24/7 care for bed by 7 PM. Patti was soooo tired as she realized she had missed her daily nap as her schedule had been so full while discussing and preparing this post. <grin> Schedule compiled from both independently confirmed details and Patti’s memory (questionable but probably correct within a day or two) <grin>.

... staff gave Patti her PM meds. I got her physically into bed for them to facilitate Patti getting to bed early.

... Patti cleaned up, Depends changed, and dressed for bed while in bed by staff

... 7:30 PM 'lights out'

In contrast just 6 months ago in the last month of homecare a typical day would have involved her sleeping in till late morning as no reason to wake her. Patti asleep enabled me to accomplish household chores, etc. Lunch would almost immediately have been followed by a nap as Patti would be bored. Blocks of unattended time necessitated by errands, work, or parenting would be filled with falls, frustration, at-risk behavior, or extreme messes resulting from bowel or bladder accidents. Visitors were rare. Loneliness and isolation were the norm. Caregiving was a solo juggling act failing with increasing progression.

through the looking glass

Patti has significant mental confusion and cognitive problems as a result of MS. Current, community, or family activities can get confusing for her. --  I can’t help but wonder how it looks to her when the immediate world around her really has actually fallen down the rabbit hole.

 

Take these examples of confused reality

 

Our daughter’s high school band is “invited” to play at upcoming 40th visit to Pennsylvania by President Bush. Once in a life time opportunity for 16 – 18 year old musicians to perform for the President of the United States and in front of 20,000+ at Hershey Stadium. School and community pride and excitement is off the charts. --  Then (you know who’s lawyer’s suddenly muddle the waters) and school superintendent is pressured into they cannot perform because tax dollars may have been involved in uniforms and transportation. ….. What a cheap shot, hurting only some excited kids. Even Kerry supporting parents outraged. …. Community rises to the challenge paying for buses with private money and buying new uniforms.  …  Kids will play  … Right back to where it all started.

 

NEWSHEADLINE: John Kerry will go goose-hunting to give voters ''a better sense of John Kerry, the guy.”   …  What “sense of the guy!” can you derive from someone who hunts a goose wearing a camouflage jacket and carrying a 12-gauge shotgun.? … I suspect everyone has encountered a goose. Around here along greenways you often have to kick them to get them out of your way.

 

NEWSHEADLINE: President Bush returns to his favorite campaign destination, Pennsylvania, today to talk about health care.  … Hello!! is the chocolate capitol of the world, Hershey Park, the right place to talk about health care?

 

And speaking of health care, after 29 days of research and investigation regarding the ‘retroactive cancellation’ of Patti’s longterm disability benefit health insurance her employee benefits office called this morning to say they have concluded that they did not request her health insurance carrier to either cancel or retroactively cancel her health insurance benefits. … Does this mean a resolution? No! Her insurance carrier still maintains her benefits office did instruct them. Her benefits office at least now claims they did not. It’s like two small children pointing fingers while her health insurance remains retroactively cancelled.

 

Patti at least has a medical reason for confusion. What is ours?

 

          `You may call it "nonsense" if you like,' the Red

           Queen said, ` but I've heard nonsense, compared with  

           which that  would be as sensible as a dictionary!'

                              Through the Looking Glass     by Lewis Carroll

allegory

Watching the Boston Red Sox play the New York Yankees, in this year’s American League Championship Series, is no longer baseball this is allegory!

somehow you find a way

It's not just me raging against the machine! The theme of health insurance and chronic illness is continued this week in AOL's own health newsletter:  (click on blue headline to link to stories)

         

MULTIPLE SCLEROSIS NEWSLETTER  |  WEEK OF OCTOBER 17

Health News Headlines

Effects of Early Therapy Last a Lifetime

Desperately seeking a diagnosis for months -- or years -- is a common pitfall for people with MS. New research suggests time is of the essence. Here's why.

 

New Technology Shows Early Signs of MS

As you read above, the earlier the better when MS diagnosis is concerned. Can a new scan detect the disease before the patient can?

 

Editor's Picks

Health Insurance: Keeping Up With the Cost

The thought of unaffordable health insurance strikes fear in the hearts of those with chronic illnesses like MS. Is your pay keeping pace with rising premiums? Check out this new study.

 

(It is a bitter circle of frustration in that with dwindling health insurance a family’s options shrink to even make use of new therapies and technology.

 

Of course, as the family and/or friends ofsomeone with MS you didn't CHOOSE to get involved in all this because you were looking for something easy to do for a day.

 

Somehow, you find a way.)

snuggly bundled

Finding Patti last night snuggly bundled in a robe with a PB&J sandwich and a glass of milk next to her while sitting in front of the TV before bed I couldn’t help wondering if Norman Rockwell ever did a picture of such an American image. Patti was in total harmony with this scene.

 

MS, wheelchair, and nursing home were all somewhat faded in the picture. It was comfy!

 

Patti was particularly happy that she was getting ready to go to bed early <grin>. It was a around 6:30 PM. There are days fatigue is better or worse for her.

 

Staff changed and dressed her for bed right after they brought her back from dinner. -- The real trick had been manipulating them into her bedtime snack early which she was enjoying in front of TV when we arrived. <grin>

 

We chatted and watched TV together while she finished her bed time snack then left her to the Sandman. Megan and I on the other hand headed out to visit the boogeyman at the Haunted Harvest in Halloween at Hershey. Where else but Hershey Park could you get Pumpkin / Chocolate Coffee? It was sooooo good!

leaning out my window

Glancing back at last couple posts it does seem I’m guilty of obsessive behavior <grin> when it comes to health insurance.

 

Just as MS is unique in each person, so are each person’s options to fight determined by money. For example, newly available medications designed to hopefully extend quality of life in early stages can cost $1,000/month.

 

Can you imagine the cruelty of the scenario where one begins the above medication on a prescription plan only to find through a change in insurance plan at work, or company downsizing, or divorce that they are no longer covered?

 

Living with MS is challenging enough without the 'options of living with MS' being so fundamentally intertwined with health insurance or independent wealth.  -- Yet I suspect it is really the same for everyone facing their own problems. Living with MS has no exclusive rights on the frustration market.

 

If only life could be like the movie "Network", where we ALL lean out our windows at the same time one night and scream at the top of our lungs, 'I'm as mad as hell, and I'm not going to take this anymore!'

Guaranteed Health Care for Everyone

Its funny how when you least expect it things can just jump right out and bite you. Last night I was reading the display boards outside high school German class at ‘Back to School Night’ for parents.

 

“Guaranteed Health Care for Everyone” was ranked #1 by this high school classroom as a feature of Germany. I just had to do some further net surfin'when I got home. .

 

In fact German medicine has twice crossed over into Patti's treatment of Chronic Progressive MS. Early in her diagnosis Patti went to Germany to visit a clinic offering alternative treatments unavailable in the US. Then years later she was temporarily approved for Avonex in the US based on studies done in Germany where Avonex had always been available to Chronic Progressive MS.

 

Some interesting tidbits I found ...

 

.....the German health care system provides comprehensive medical services for all German citizens. The health care system rests on three pillars: 1. Primary care by general practitioners 2. Acute care hospitals 3. After-care and Rehabilitation Clinics

 

.... everyone uses the same health care facilities.

 

... instead of being paid for by taxes, the system is financed mostly by health care insurance premiums, both compulsory and voluntary.

 

... some 92 percent of Germany's residents receive health care through statutory health insurance … Those not insured through these funds, mostly civil servants and the self-employed, have private for-profit insurance. Only an estimated 0.3 percent of the population has no health insurance of any kind. They are generally the rich who do not need it and the very poor, who receive health care through social assistance.

 

... following the United States and Britain, Germany boasts the highest number of doctors to have received the Nobel prize.

For further information: The German health insurance system

Presidential candidates debate

Watching the Presidential candidates debate last night from Arizona I was particularly focused on the topic of health care and health insurance.

 

I was somewhat surprised to watch both candidates so blatantly 'lie by omission' about the most significant reason for escalating costs. I guess it’s a close election and the sick could tip the balance so why upset them and their families?

 

Among all age groups, the 20% of people with the most serious health problems account for 80% of total U.S health-care costs.

 

Living with Multiple Sclerosis the above fact NEVER escapes us. Chronic illnesses such as MS are health care cost nightmares. No person or family could afford the lifetime health care costs of a chronic illness like MS. Currently popular and highly advertised MS medications cost an average of $1,000/month with a patient paying a small copay while insurance pays the lion’s share. How many could continue ‘maintenance’ meds if forced to pay out of pocket?

 

Health insurance is unfairly balanced on the backs of the healthy.

 

Auto insurance rewards safe drivers with low premiums and penalizes bad drivers with high premiums. Were health insurance structured that same way people with chronic illnesses or health problems could not afford insurance renewal.

 

Yet because it is balanced on the backs of the healthy, millions go without health insurance at all because it is unaffordable to so many families who if insurance were fairly structured much like auto insurance could easily afford it.

 

Minus the personal insight the following two articles from National Multiple Sclerosis Society better elaborate in detail the problems of health insurance and chronic illness specifically MS:

 

         Health Insurance: Availability and Price

“…As the costs of health care continue to increase, people with chronic illnesses run the risk that adequate health care coverage will be priced beyond their reach…”

 

     2004 Advocacy Efforts—Health Insurance and Medicaid

“…There is little doubt that healthcare is in a crisis in our country—Americans spend an ever-growing portion of their paychecks on health care; many companies are dropping medical coverage entirely or trimming their benefit packages…”

Halloween Parade

Last night was the big Halloween Parade in town. We had hoped to bring Patti home for dinner and parade watching. The dinner part went OK.

 

Trying to get her dressed in warmer clothing for an outdoor evening parade in October was bushwhacked by a bout of obsessive behavior over her shoes.

 

In recent years these bouts of obsessive behavior can erupt spontaneously over the weirdest of things. Neurologists explain it has to do with MS related damage to the frontal lobe of her brain. Due to myelin deterioration the neurological transmission of signals that process information and how to react to it, basically are stuck in a loop.

 

Nothing can deter her until the spell has run its course. Tonight she decided to obsess over removing and replacing her shoes. Suddenly Patti ‘discovered’ her shoes as if they were ‘the wheel’ to early man.

 

Patti may even react aggressively to interference, with foul and abusive language even accelerating to physical posturing. From the outside looking in it is bizarre and impossible to comprehend.

 

With the parade forgotten by Patti and ‘under the spell’ of her shoes I returned Patti to professional care (still repeatedly changing her shoes through the ride).

 

As a result a bit late, Megan and I still headed out to the Halloween Parade. I guess we’ll just have to chalk it up to one of those bittersweet transitional moments. Halloween used to be a family ‘obsession’ <grin>. The last Halloween before 9/11 we hosted over 225 Trick or Treat visitors to our door. (Nothing has been the same since 9/11, but that’s another story.)

 

Considering this town only has a population of 9,000 the scale and participation of this Halloween Parade has always amazed us since moving her three years ago. Small town America will never cease to fascinate me.