Thursday, April 21, 2005


Finding a game to play with Patti is a puzzle in itself. Visual and physical impairments are compounded with intellectual symptoms of attention span, memory, and cognitive challenges.


You can intermittently include her in a game you are playing with others. You can play a game for her. The challenge is to play WITH her in a game she can participate in fairly


This past Fall at the Pennsylvania Renaissance Festival I watched some characters playing Bocce. Some roving Italian ‘character’ noticing my interest and listening to my explanation for why he explained to me ‘in character’ that his friends Galileo and da Vinci claimed that playing Bocce “rejuvenates the body and mind”.


Some things take a while to start <grin>. Yesterday, it was 84 degrees in April so why not try Bocce?


The game of Open Bocce is adaptable to any environment. It’s kind of a mix of bowling, pool, and Croquet. What intrigued me about it for Patti is that she throws out the target ball (pallino). Any other outdoor game she has to be moved to some ‘handicapped’ distance from a fixed target. With Open Bocce no visible handicapping is needed. Everyone else has to ‘adapt’ to her target.


How did the experiment work? It was unquestionably “rejuvenating”! I had to finally call a stop to the evening or Patti would still be playing. <grin> It was great to finally see her fully participating in and enjoying a game on her own. Winning straight out was an unexpected thrill for her.


By her throwing out the pallino she basically sets her optimum range and angle of throw. Because of MS vision it may not always be straight, and it may change. We made a minor modification by making the able-bodied people sit down to throw with their weak side hand which is more difficult than you can imagine. Competing against someone who lives in a chair and has been living with MS for 19 years, you quickly discover that as an able bodied person you are in trouble. <grin>


The great thing is all you need is a patch of ground and a bag of Bocce balls.

Wednesday, April 20, 2005

wondering about the causality of the paths we all travel

It is bizarre how one spontaneous event in time can seem to pull back a veil on another time and place and leave me wondering about the causality of the paths we all traveled to get here. It probably would be fascinating to sit and ponder the Metaphysics of it all if I had the time.

The following note is just one of those special moments triggered by Patti’s sudden decision to want to be in the MS Walk this past Sunday. Without that decision this past time and place would not have been shared. It is a special MS story and was accompanied by an extraordinary donation.


Dear Patrick,

In 1982 when I ran the Boston Marathon. I had worked so hard to qualify--and that is a whole nother story. Anyway, that year the MS society asked runners to run for them, so I worked for sponsors. I badgered everyone that I knew into sponsoring me--and you know I can be persistent when I want to.

I was taking care of a 23 year old, who had an incredibly bad case of MS. She had nystagmus, was nearly blind, and was highly verbal, so she could help me try to understand how it was for a young woman to be caught in her body. For example, once she talked about trying to date another disabled person (her friends thought she should be 'fixed up'--and how she would never do that again)--she said, "We were just too helpless".

She had long dark hair, and also was a poet. I cannot describe how cool/creepy it was to have her recite her poetry by memory while she looked at you with her nearly sightless eyes that quivered.

I was so taken with her that I tried to write an article for publication that included her poetry. I sent it around to many places--but now I am more aware that it was poorly referenced etc., and it was never published.

Anyway, that year, when I ran Boston, which may have been the high point of my life, I earned around $600 for MS. I will be walking/running with you in spirit as you push Patti along--I am tearful when I think of teenage Megan and Patti's elderly parents marching along.

Tell Patti: You go girl!

Monday, April 18, 2005


The “MS Walk” is probably the public event most associated with Multiple Sclerosis. Believe it or not, in 19 years of living with MS Patti has never participated in an MS Walk


For reasons only Patti understands, early in the week, Patti got it into her head that she wanted to be a part of this year's walk held yesterday.


With no more than a couple days notice I emailed friends and family of Patti’s wish. We extended an invitation to join a team and I asked people if they could kick in $5 or $10 bucks so Patti could end up with an MS Walk t-shirt out of the adventure if she raised $100.


I am still humbled by the response. In just days, our team of zero grew to 10 and donations have been overwhelming. Patti could end up with an NMSS wardrobe <grin>. I will label Patti’s MS Walk sweatshirt with the names of her team and supporters in indelible ink.


Multiple Sclerosis has been the major obstacle to participation.  The MS Walk is not a common forum for those with MS. For example, I did not see anyone else in a wheelchair or even noticeably effected by symptoms of MS.


Something was ‘in the air’ both Sunday and in the days leading up to Sunday. Living with MS isn’t usually associated with such an upbeat memory. Family and friends ARE medicine!

I am genuinely at a loss to capture my feelings about what happened this week. It’s still overwhelming the support of family and friends. I just find myself mumbling that "I’m humbled."


Asking Patti Sunday evening if she had any words of wisdom after the MS Walk and 19 years with MS  “MS is a miserable disease. MS still sucks. Tell everybody 'Thank You' I had a great day and I just want to go to bed!”

Monday, April 11, 2005


MS unpredictability still amazes me after all these years. A week ago Patti napped for 4 out of 6 hours of a visit. Yesterday she could have been the Energizer Rabbit going for over 8 hours and never considering a nap.


Anchoring the day we attended a matinee performance of “West Side Story” at our daughter’s high school. Performing arts are challenging for Patti to see unlike the mega screens of the film arts. However Megan’s high school productions are more off-Broadway in spirit. Action is designed to spill into the seating creating an opportuity for Patti.


The able bodied avoid wing seats because they are not center view. The angle of view doesn’t matter at all to Patti proximity is the only issue. When action does spill into the audience it will come off stage right and left; therefore wing seating will be nearly interactive.


Outside of the unforgettable Leonard Bernstein and Stephen Sondheim music, Patti’s MS symptom of visual impairment restricts her to the blur of colored lighting when the production was on stage only. Fortunately, most of the big numbers involved action both on and off stage. It was fun to watch her stare, slowly process what was happening, and erupt in mega smiles as Sharks and Jets rolled around the floor fighting at her feet and beside her chair, even tucking her feet under to avoid taking sides <grin>. I had transferred Patti into the stage right, front row, aisle seat and as the stage right aisle was an alternate exit and entrance she had cast around her her for much of the play, ending with Officer Krupke looming directly over her for closing curtain bows.


Accessibility is more than the little blue and white logo. “Living with MS” we have learned to know what probably will work and try to create the best of possible situations. Broadway is not going to work for Patti. Amateur productions are more ‘user friendly’.


Theatre is about catharsis. We all need it. Was it a catalyst in her extraordinarily successful day? Who knows? All that is known is that the hours, days, and weeks of hard work and effort by the cast and crew of this one production of "West Side Story" enabled one person to escape Multiple Sclerosis for a few hours one Sunday afternoon. That is priceless. 

Saturday, April 09, 2005

the Internet still simply feels magical!

Experimenting with and experiencing journals this past year has been a constant reminder that we are not alone. Though the specifics of our story may be unique, the Internet has once again soothed that fear of being isolated.


The comfort is so real sometimes I want to reach out to touch but the true spirit of the Internet community is so amorphous that the plastic ‘temple’ seems almost comical.


Millions of Americans tune into weekly survival shows for an edited, attention-span, friendly view of people facing challenges. While within neighborhood blocks or even doors of every one of them are anonymous families fighting for survival 24/7 with no safety nets. Caregiving and disabling disease over time seem to spin a cloak of invisibility.


The Internet enables contact, communication, and sharing. I’m sure there probably is some kind of psycho-babble book explaining all this available through Dr. Phil or Oprah’s Book Club. Personally the Internet still simply feels magical! (Thank you Al Gore!)

Tuesday, April 05, 2005

Their Bugs Are Worse Than Their Bite ???

“…many diseases long believed to be noninfectious (such as multiple sclerosis) may in fact be attributable to microbes contracted from animals. …”

Their Bugs Are Worse Than Their Bite

By E. Fuller Torrey and Robert H. Yolken Sunday, April 3, 2005 © The Washington Post Company

Monday, April 04, 2005


Picture from Hometown


Health News Headlines

MS Drug Warning

Some folks with MS swear by the drug Avonex. Now a rare -- but dangerous -- side effect should make patients watchful:

Liver Injury Warning for MS Drug Avonex


Editor's Picks   


Montel Williams Knows Talk Shows -- and MS

Many of you have shared your stories about MS and its role in your life. Now hear his.

Omens and talismans

This morning a large red tail hawk sat on a guard rail watching me approach while driving an isolated stretch of back road,. (I sensed as if it was waiting). I slowed to a stop, rolled down my window and we just stared at each other only feet apart. It was eerie but also felt transcendental. It certainly was unusual.


Driving away I watched ‘Apollo’s messenger’ through my rear view mirror turn its head to follow my departure then launch itself skyward. 


Omens and talismans are mythology and folklore; at least that is what the rational side of my brain says.

Sunday, April 03, 2005

sede vacante

Following rainfall that rivaled Ivan, it seemed a perfect day to pick Patti up for a day at home. <grin> The adjacent pictures do not normally have waterfront property. The stone bridge is actually over a small stream that engorged with rainfall has decided to surround the bridge and lay siege.


Patti’s visual impairment prevented her from viewing nature at work. Even the flooded yard flowing onto the street she could not see from the car window.


One day I’ll learn to stop giving Patti a choice. <grin> For her 6 hours at home she ‘chose’ to nap for 4 of them. MS fatigue is difficult for able bodied friends and family to relate to. As a caregiver on the other hand I always felt like I was in perpetual motion.


Today’s homily at Mass talked about the Papal selection stage known as ‘Sede Vacante’ (the empty chair). Unlike the immediate transition of succession in secular government and leadership, sede vacante designates a time to recognize and accept absence and transition in our lives.


It got me thinking that disease and disability at varying levels also create a version of an empty chair, or a 'different chair' in our daily lives. Yet our culture is to rush forward, get on with your life. Creating time to recognize and accept transition is not a bad idea.

Friday, April 01, 2005

a basket of medicine

Medications place the home caregiver in a peculiar role. After a year of observing how a care facility deals with daily medications vs home care I’m struck by the ‘professionalism’ demanded of the home caregiver.


Medical and legal requirements dictate who can handle medications in professional environments, including training and education.


Yet in home care it is just taken for granted that the caregiver has their act together. The only training I ever received was a 20 minute session on how to give intramuscular  Avonex injections.  Years before that when Patti tried Calcium EAP as an ‘alternative medicine’ treatment, I had to give her weekly intravenous injections with no training.


When symptoms of mental confusion first appeared Patti’s doctors just expected me to remove her medications from her access and take over. Intuitively, because you are protecting the person in need, you create your own customized system of checks and balances. A degree from the “school of hard knocks” is usually the only medical training.


***(With 3 cats, I guess I could also consider blood loss and scars from “giving pills to cats” over the years as a qualification. <grin>)


Daily prescriptions as in the quantity pictured demands more than just giving someone a pill. Certain meds are

…to be taken with food

…while others should be taken on an empty stomach

…or at specific times of day.

A caregiver has

…to balance the timetable of refills

…renew prescriptions

…find a way to pay for

…and pick up medications.

A caregiver has to research and remember which OTC medicines are in conflict. One cold remedy may contain a less compatible ingredient than another name brand.


I think home caregivers do an extraordinary job with this responsibility. The pictured basket of prescription bottles might seem innocuous, or at worst tedious. Looks deceive.

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