Sunday, October 31, 2004
Saturday, October 30, 2004
Living with MS does not have to be boring.
"Boys and girls of every age
Wouldn't you like to see
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.
Thursday, October 28, 2004
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>
Wednesday, October 27, 2004
Tuesday, October 26, 2004
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!
Monday, October 25, 2004
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.
It's enough to make you batty and 'living with MS' has enough challenges.
Sunday, October 24, 2004
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."
Saturday, October 23, 2004
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.
CAREGIVING: (only the first two specifically deal with MS)
Friday, October 22, 2004
Thursday, October 21, 2004
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
Wednesday, October 20, 2004
Tuesday, October 19, 2004
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
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.
As you read above, the earlier the better when MS diagnosis is concerned. Can a new scan detect the disease before the patient can?
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.)
Monday, October 18, 2004
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!
Sunday, October 17, 2004
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!'
Friday, October 15, 2004
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
Thursday, October 14, 2004
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:
“…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…”
“…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…”
Wednesday, October 13, 2004
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.
Tuesday, October 12, 2004
Living with Multiple Sclerosis in our family has always taken the flu season to the next level. This is our first flu season with Patti in a 24/7 care facility.
Visiting Patti Monday night certainly had surreal moments as some staff have begun working in surgical masks. Signs in BOLD TYPE on brightly colored paper greet you at all possible entrance doors warning you politely to ‘not visit’ if you have symptoms of a cold or flu.
Staff and residents have been vaccinated as an added line of defense, so you know it’s basically about YOU. Makes you feel like a big cartoon germ invading somebody’s home.
No matter how well intended your visit some times we all need to be hit up side the head with a big stick. … The Center for Disease Control reports that up to 90% of deaths to colds, flu, and pneumonia occur in the American population greater than 65 years of age.The normal aging process compromises the immune system of an aging body. Chronic diseases put the person at an even greater risk.
Monday, October 11, 2004
With Patti safe in 24/7 care, Sunday was about parenting and FUN. I drove Megan and a couple friends a few hundred years back in time to the Pennsylvania Renaissance Faire.
Even totally stepped out of character and had my palm read by a gypsy. <grin>. That was a hoot!
The middle ages are just perfect for a day trip! Though jousting seems like it could give NFL football a run for the money <GRIN>!
Saturday, October 09, 2004
For Patti’s who's advanced MS symptoms prevent her from directing her own care, I really have to randomly and unannounced ‘drop in’ to check on certain aspects of care.
Swallowing and choking have plagued mealtime with progression in recent years. Patti’s meals have to be cut into tiny pieces to facilitate chewing or lack thereof and swallowing. Foods have to be equally ‘soft’ in texture. Drinks have to be in small glasses that she can hold and so on.
Heimlich maneuvers have been too frequent and a near fatal incident occurred at her parents’ home involving loss of consciousness and an EMS team not too many years ago. Patti’s meals MUST be pre-prepared and monitored. You can NEVER let down your guard.
In an institutional setting with revolving staff it does not take too much imagination to see how easily and quickly it could all go wrong.
From the National Multiple Sclerosis Society “Speech disorders are fairly common in MS. Lesions—damaged areas—in different parts of the brain can cause several types of changes in normal speech patterns. …Long Pauses … Words are Slurred … Swallowing Problems …”
Speech therapists have unsuccessfully evaluated and attempted to work with Patti. In her case not only is dysphagia a factor but mental confusion and memory literally cause her to forget what she is doing while in the middle of swallowing.
Yesterday I ‘dropped in’ just before lunch. I was most pleased to find Patti chatting and giggling away at a table with two other residents. The facility dinning room is restaurant like in appearance and atmosphere. Patti’s juice, milk, and ice tea were all in small perfectly sized glasses for her. Her lunch of sweet and sour chicken and side dishes were served cut into tiny pieces. .
Not only did her table mates ‘remind’ her to eat slowly but a dinning room staffer asked me how much longer I would be staying because she monitors Patti and another couple residents at lunch.
As a surprise 'plus' when asked about physical therapy, Patti though begrudgingly complaining about it <grin> admitted she had participated that morning in exercising her legs.
Randomly and unannounced, ‘inspecting what I expected’ had the most pleasant of results.
Friday, October 08, 2004
Out of curiosity I tried the “search” function on the AOL Journals Main Page for both Multiple Sclerosis and Caregiving. Yes, I tried all logical variations of both words.
I was surprised to discover basically ONLY 3 active journals for Multiple Sclerosis and 3 active journals for Caregiving. Yet a search for the word “bird” produced more active journals than anyone would ever have the time to read.
As for MS – 400,000 Americans have MS and 200 per week are newly diagnosed according to the National Multiple Sclerosis Society.
As for Caregiving – EVERYONE will one day know or love some one who can no longer take care of himself or herself.
I don’t know what percentage of the Internet market AOL has and I don’t know what percentage of homes in general participate in journals. However the proportions of topics like MS and Caregiving in relation to ‘birds’ does seem odd?
Perhaps reality journals are too much like a mutated Dickens's ghost of time future ...
... OR as my teenage daughter often explains, “Dad, NOBODY reads AOL Journals. (followed by alternating sighing and tongue clicking sounds) and I NEED to use the computer!” … The balance of parenting always helps to keep it all in perspective. <grin>.
Thursday, October 07, 2004
Unquestionably our health system including health care costs, health insurance, and prescription costs is broken. That’s certainly not new news to anyone. The question is how to fix it?
I did find the following article interesting and believe it is a reasonably balanced review of each Presidential candidates’ postion on the topic of a ‘Health Plan’. (click on blue highlighted text for full story)
Bush, Kerry Have Radically Different Approaches to Health Coverage
Sept. 23, 2004 -- President Bush and Sen. John Kerry have both cranked up the rhetoric in an effort to sell their health care plans to American voters, both promising to ease rising costs and reduce the number of families without insurance.
At the bottom of the complex plans and flowery -- and sometimes exaggerated -- campaign speeches lie some basics that reflect a wide gulf between the candidates' vision of how to begin to fix the nation's ailing health system …
Wednesday, October 06, 2004
WINTER is my sanity. This morning's FIRST FROST was a welcomed 'omen'. I needed to know Winter is not far away. <grin>
Yesterday attempting to follow up on retroactive cancellation of Patti’s health insurance I discovered what could be the beginning of the endless loop of stalling or an act of incredulous coincidence. Or in other words, blah, blah, blah … (nothing has been done) but will be looked into beginning NOW with their apology of course.
.... except that over the last two weeks we have received a steady stream of past due medical bills in the thousands of dollars from providers who have had to refund their insurance payments.
Tentatively exploring legal options we were told it was a waste of our money and time. Major corporation will endlessly stall and delay. We will fold from medical and legal bills before we ever see a court room. – If misery prefers company, it was explained this is a growing medical legal trend everywhere. Corporations have human resource budgets to balance and stockholders want profit from insurance companies.
At this point the “Mad Hatter’s Tea Party” approach is frankly the best – hope there is corporate conscience and that this is a mistake compounded by bureacratic errors. Certainly a foolish and idealistic approach however as bankruptcy or some variation is the only apparent alternative you tend to entertain foolish hopes just a bit longer.
I picked Patti up for dinner and some family time at home Tuesday. We detoured for some quick grocery shopping which Patti totally enjoyed. I forgot its probably been a couple years since she was in a grocery store. She was more like a kid in a candy shop. <grin> It was rather contagious, it’s been a long time since I enjoyed a visit to a grocery store.
Attempts to later discuss either insurance problems or physical therapy were short lived and lost to a newly acquired Halloween singing witch.
As I’ve referenced before there are days when MS symptoms of mental confusion, memory, and attention span can make you feel like you’re in parallel universe as a caregiver.
Tuesday, October 05, 2004
Caregiving ‘rules’ certainly do affect the way things are done especially between homecare vs institutional care.
Staff cannot compel or force Patti to do things. Patti’s participation must be based on choice.
This all seems simple except when you deal with Patti her answers can be driven as much by mental confusion as by choice. Of course, how can you really know?
In homecare a different set of rules would apply extending through “just do it!” That would never be acceptable in an institutional environment.
As a result one of the obstacles within institutional care ironically can be Patti herself.
For example, currently there is a problem with Patti’s participation in physical therapy. When the plan is discussed she wants PT and is interested. Yet later when a PT aide comes to get her, she would rather take a nap <grin>, is not interested,or would rather do something else.
Depending on which time of day, which aide, their persistence, their creativity in phrasing the question, their available time to follow up (Patti might respond differently minutes later if asked the same question) and other variables all can affect what might seem so simple from the outside.
In ‘living with MS’ and symptoms of mental confusion the traditional cause and effect way of approaching problem solving just does not work.
Sometimes I think caregiving talents were determined back in Kindergarten. You either put the round pegs in the round holes or you began a lifetime fascination with trying to fit the square pegs into the round holes.
Monday, October 04, 2004
That perfect fire in a fireplace with the flick of a switch still seems like magic (especially before the morning’s first cup of coffee <grin>).
One of many accessibility modifications when we had this house built. MS prevented Patti from safely dealing with wood and ‘live’ fire. This gas fireplace felt heretical after wood fireplaces and stoves.
With this first nippy morning of autumn, now I can’t even imagine anything more convenient and ‘perfect’! Accessibility options can benefit all.
Saturday, October 02, 2004
Autumn felt transcendental in its atmosphere last night. We brought Patti home for dinner on our patio and some family time.
When I picked Patti up I could hear her all the way down the hall, laughing in the common area with other residents. Then not long after dinner she turned to me and asked to go back, she felt like she had “abandoned” her friends.
With progression 24/7 homecare was increasing isolation and loneliness. Socialization and companionship in a 24/7 care environment were two of many hopes when we began this process
Believe in yourself, your neighbors, your work,
your ultimate attainment of more complete happiness.
It is only the farmer
who faithfully plants seeds in the Spring,
who reaps a harvest in Autumn.
--B. C. Forbes
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- time to fade out
- Trick or Treat
- Is it live? or is it ...
- opposite directions?
- swing used to be a dance
- Rowdy Customers In Wheelchairs
- flu shot or no flu shot
- At last it dawned on me ...
- Searching for Multiple Sclerosis or Caregiving Rev...
- A Day In The Life
- through the looking glass
- somehow you find a way
- snuggly bundled
- leaning out my window
- Guaranteed Health Care for Everyone
- Presidential candidates debate
- Halloween Parade
- at an even greater risk
- a day trip
- Thou Shall Inspect What Thy Expect
- SEARCHING for Multiple Sclerosis and Caregiving
- Bush vs. Kerry: Whose Health Plan Is Better?
- FIRST FROST
- physical therapy
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