Saturday, May 29, 2010

Great (accessible) Pennsylvania FlavorFest

Living with Multiple Sclerosis is first and foremost about “living”. 

With Harrisburg’s Patriot-News ArtFest deciding to charge admission this year we decided to try out The Great Pennsylvania FlavorFest at the Pennsylvania Renaissance Festival Fairegrounds.

Free parking and free admission are inviting. Free wine tasting hosted by over a dozen Pennsylvania vineyards was a most welcome surprise for Patti since she was neither driving nor even walking.

Accessible parking is available, extensive, adjacent to the entrance and politely manned. For example, noting I needed to deploy a ramp the staff blocked out the space next to us.

Following our formula for success we arrived early to avoid the crowds of buttocks (from a wheelchair perspective) and to beat the MS unfriendly heat.

Faire grounds cover 35+ acres and overwhelmingly the paths are paved. Yes there are some stone or grass covered areas however we found them all doable.

Food and wine tasting lines were non-existent upon our early arrival. We laughed as we tried to find the ‘proper’ wine for our Irish Nachos.  

Beware the terrain, parts are hilly. Just plan accordingly and use the gentler inclining paths. All paths lead to the same places.

Patti totally enjoyed Mad Tom’s Wreck Room. Give Mad Tom a buck and break stuff. Throw a vase, a mug, a dish, a plate, whatever … you pay for it – you break it! You laugh!
Enjoy the terrain. Part forest, part glen, part village, it is a treat.

Handicapped accessible restrooms are available. Wheelchair rentals or loaners are not available.

After an hour or two the RealFeel temperature of heat and humidity was climbing into mid-80’s F° and starting to work against Multiple Sclerosis, and there was nothing better than a funnel cake, lemonade, and cigarette in the shade.

Rolling back through accessible parking I could not resist this photo as Patti’s wheelchair and the vehicles line up like nesting dolls.
Next stop a long air conditioned afternoon nap!

Now of course nothing is as easy as it seems. Dozens of people deserve credit for making today possible, from care facility staff to vendors. Thank You!

Caregivingly Yours, Patrick Leer
web site: 
musings: patrick ponders 

Thursday, May 27, 2010

degrees of separation from Multiple Sclerosis

At what degree of separation from a disabling illness or physical or mental disability does someone actually commit to eliminating barriers?

Would you “eliminate” barriers for your child? Your grandchild? Your parent? Your cousin? In-law? An Aunt or Uncle? A nephew or niece? A friend, how close a friend? Co-worker? Neighbor?

Patti surprised me as she joined quite vocally into a similar conversation the other evening. Though it should not have surprised me, after all it is not abstract for her it’s personal.

How inviting is being jerked, pulled and lifted into a home? How welcoming is a house where you have to ask for assistance any time you want to move about?

I doubt if there is a right or wrong answer here. Variables are nearly infinite in both disabilities and the resources and options of the able bodied.

Today is World MS Day, 2 Million people in the world have Multiple Sclerosis. How many degrees of separation can you really be on the human web? 

World MS Day global campaign film

Caregivingly Yours, Patrick Leer
web site: 
musings: patrick ponders 

Sunday, May 23, 2010

dental care Multiple Sclerosis

While a day in the life of caregiving rarely has epic moments you can still find yourself pumping your fist into the air over moments atop the Mundane Mountains of life.

Receiving a glowing report card call from the visiting dentist at Patti’s care facility Saturday morning was just such one of those moments. With his mention of “no cavities” I could not help remembering the good ol’ Crest advertising slogan.
Living with Multiple Sclerosis it’s not easy to keep up with a daily dental hygiene routine. Above and beyond fatigue and weakness, progression of Multiple Sclerosis symptoms including wheelchair necessity, physical dexterity, spasticity, eye hand coordination, numbness, tingling, and cognitive / memory impairment all conspire against efforts to brush and floss teeth.

Plus some medications actually work against gum health.

Additionally, there are no such things as ‘routine dental visits’. Finding an accessible office much less an accessible dental chair is only the tip of an iceberg including socioeconomic factors (lack of dental insurance, inability to pay out of pocket), and assisted transportation to get there and back.

As Patti’s inability to participate in her own activities of daily living have diminished, dental care challenges have increased. Trying to help someone to effectively brush their own teeth, and/or brush their teeth for them, is more demanding than can be imagined.

Do not assume modern technology is an answer. If someone is already challenged physically to hold anything, legally blind, and way too easily confused just go ahead and hand them a buzzing vibrating toothbrush and see what happens. … You may as well have handed them a snake.

It takes time, commitment, patience, and respect to make the experience work. Having someone help you or brush your teeth for you a couple times a day is frankly damn intrusive. I find if I make a pinch of entertainment part of the caring mix it works so much better. After all a smile is far easier to brush no matter who is doing the brushing. 

Caregivingly Yours, Patrick Leer
web site: 
musings: patrick ponders

Wednesday, May 19, 2010

when life gives you bop bags

Technology of family memories can be more than sight and sound … your mind travels.

Twenty-two Easter’s ago, Patti’s out of town family and friends threw her a baby shower. Due to 9th month pregnancy restrictions a video taped message from Patti, a video camera and I attended as Patti’s surrogate. … Wow! We were pretty high tech for those days.

Multiple Sclerosis changed forever family dynamics. Watching a clueless me from 1988 open a gift of a diaper bag was so strange as that very diaper bag would basically become my BFF after Patti's first major MS exacerbation.

Now back in real time I was again acting for Patti, this time as her advocate at her Care Plan Review at her care facility. Surrogate … advocate … time travel can get dizzying.

Sitting down with department heads from nutrition, activities, nursing & therapy, and care aides I sometimes wonder if I was that effectively schizophrenic as a home caregiver. Did I pause long enough for the voices in my head to actually plan Patti’s daily nutrition, activities, nursing & therapy, and care? If I found a ‘day in the life’ home care video 22 years later, would it show me cargiving or running around chasing will-o'-the-wisps?

It has always been sacred to me that Patti’s self-determination and values are intrinsic and undeniable, yet I have been acting in Patti’s best interests longer than I have ever really ‘known’ her. Weird.

Life lacks a roadmap from help to beneficence to care to advocacy? 

Then again the unbeaten path is rarely boring. Above all beware the trap of paternalism, such as “leave the advertising alone”. As we were exiting Ironman 2 at Cinema Center, Patti discovered from her wheelchair perspective Despicable Me inflatable bop bags in the lobby. When she additionally discovered they were whomp-activated to laugh and giggle and bounce back to bop her … well, the absolute happiest brawl I have ever heard broke out. 
when life gives you bop bags …

Caregivingly Yours, Patrick Leer
web site: 

Grief and Loss in the MS Journey

From MSAA Motivator Winter/Spring 2010
" members and patients experience grief in different ways. ...  They are on the same roller coaster and can't get off. But, one is in the front car and the other is in the middle or back car. Although the ride is the same, the experience is different. They can't understand why the other person isn't reacting like they are. ...."
Grief and Loss in the MS Journey

Written by Maryann B. Hunsberger

Caregivingly Yours, Patrick Leer
web site: 

Friday, May 14, 2010

Greek Festival NOT exactly accessible

Wheelchair accessible obviously looses something in translation when it comes to the Capitol Region Greek Festival of Camp Hill, PA.

It has been 20 years since Americans with Disabilities Act  (ADA) became law yet too often people with disabilities still find that they are 'not exactly' completely welcome.

Visiting the Greek Festival today we were disappointed to discover that the promoted “browse and enjoy” gift shops of Greek clothing, books, ceramics, icons, jewelry, and handcrafted items are accessible only to those who can WALK up and down stairs.

How rude!!! … and their loss as Patti loves to browse, shop and 'spend' at festivals and street fairs. 

However living with Multiple Sclerosis for 20+ years we do not let obstacles define our fun.

We usually try to arrive about 30 minutes before any festival or street fair begins. Vendors are always open and glad to help. Once the crowds arrive being in a wheelchair is like being in a forest of buttocks.

Having no idea what was what when we encountered an overwhelming array of desserts, a kind worker helped select us a sampler. Trying to take a picture of our yummy desserts I had to laugh as an impatient hand crept into the camera view finder …
Holy Trinity Greek Orthodox Cathedral hosting the Greek Festival was certainly beautiful.
As temperatures climbed into the 80’s and clouds gave way to sun and humidity one frustrated shopper ‘denied access’ to shopping started getting cranky about everything and anything. MS fatigue and Uthoff’s Phenomenon rules!
Heading out, soon Patti was happily laying down for a nice air conditioned afternoon nap with a belly full of treats. 


Caregivingly Yours, Patrick Leer
web site: 

Monday, May 10, 2010

Mother's Day 2010

With lilacs scenting the morning breeze I sipped the morning’s first cup of coffee and greeted the day.

J & T were in Boston preparing for their on-the-road  Mother’s Day living with teen autism.

I dialed Patti’s care facility. People are never carry-out. Calling ahead to any care facility is a courtesy, especially if I want to hope that they can find the time to get her up, changed, and dressed. Most often they can however sometimes the physical home caregiver skills come out of moth balls.

Once we resolved her first cigarette she was one Mother who was ready to roll.

Big family meals can be choking risks for Patti, all the conversation and distractions magnify MS related swallowing challenges and dysphagia. However a little cozy 'assisted' dinning aside with “moi” safely resolved eating and maximized socializing.

Family time with her parents, siblings, our daughter, and cousins was both enjoyable and exhausting for Patti. Drawing on more heart and effort than most mothers and daughters, sooner than later MS fatigue kicked in and all Patti wanted was to take a nap.

With the dinner hour looming, I worried that the clock might work against her. Fortunately short staffing in the assisted dinning room meant Patti would be fed in her room when she ‘wanted’. A good long nap and her dinner tray when she wanted was a Mother’s Day godsend.

As for me … well I went home and opened a special book. Once upon a time, my Mother gave me a book of poetry I never even opened for over 20 years, and years after she had died. To my wonder, throughout the book, I found handwritten notes from her in the margins of poems such as, “If I could have written something, it should have been this”:
When I hear you laugh, more softly now, I remember
The excitement and inflection of a happy child
To see you grown suddenly, unmistakably older, saddens me
But I know that somehow beyond all words, beyond
Time and pain and the mystery of death
We will walk again amid the flowers of spring
"Whatever else is unsure in this stinking dunghill of a world a mother's love is not." James Joyce

Caregivingly Yours, Patrick Leer
web site: 

Sunday, May 09, 2010

Caregiving Counseling

Sharing our story and its trial and error learned lessons never ceases to amaze me, “Oh! The places you’ll go!” … like a list of top 50 counseling blogs.

The Internet provides a great venue for counselors … You can pursue counseling in school systems, in personal growth or relationships, in substance abuse or other addictions and in rehabilitation or eldercare and grief. The following list of top 50 counseling blogs takes a look at blogs in each of those categories. [click to continue…]

Below are their designated top “Caregiving Counseling” blogs:

About Senior Living: Sharon O’Brien, MA, LPC, is a licensed professional counselor with a private practice in Portland, Oregon. She helps people cope with changes that come with age in this blog.

Caregiving 101 Blog: caring for the elderly in their home, they taught in–services for doctors, nurses, the staffs of hospices and home health agencies, sharing tips and unique ideas for caring for people with dementia.

Caregiving: The Sandwich Generation: Learn from this writer’s experience what it’s like to provide caregiving to a person through Alzheimer’s, Parkinson’s and coronary diseases.

Caregivingly Yours: Sharing the trial and error learned lessons of a spouse caregiver dealing with Multiple Sclerosis and with teen autism.

David Fireman’s Blog: Part of Legacy Connect, a network for grief support groups, expert advice on grieving, mourning and bereavement, this blog looks at those topics in detail.

Eldercare ABC Blog: Eldercare ABC began as an idea based on empathy and community. This blog taps into the extended social network idea for support.

Family CareGiver Blog: This blog is written by caregivers, for caregivers, offering fresh content, news and helpful studies to its readers.

Hospice and Caregiving Blog: You’ll find stories and articles about the end-of-life experience at this blog.

The Caregiver Blog…your C.A.R.E.S. Share your thoughts or questions related to caregiving for the disabled and chronically ill at this Community Advocacy for Resource, Education, and Support blog.

The Caregiving Zone: to provide holistic education as well as one-on-one consulting for individuals who are facing their own or another's serious or potentially terminal illness. 

Caregivingly Yours, Patrick Leer
web site: 

Saturday, May 08, 2010

Spring Games Special Olympics

Sounds of leather, wood, and cloth marched through the respectful silence broken only by the orders as the  County Police Color Guard presented the US flag.
An elementary age Special Olympic athlete led the Pledge of Allegiance. With her right hand over her heart, her smile, passion and Latin surname spoke louder than all the noise over immigration.

Students of a deaf and hard of hearing program signed the Star Spangled Banner as the song soared through the stadium.

Does that star-spangled banner yet wave o’er the home of the brave?

Yes, Francis Scott Key, it was the kind of brave that catches your breath to see.

Let Me Win
But if I cannot win
Let me be brave in the attempt

Caregivingly Yours, Patrick Leer
web site: 

Tuesday, May 04, 2010

Multiple Sclerosis parenting nature vs nurture

With Mother’s Day approaching what family with a parent with Multiple Sclerosis has not reflected at one time or another on MS and genetics?

“An incredibly important negative” on the role of genetics in the nature vs nurture and Multiple Sclerosis debate may not be the most conventional Mother’s Day gift but “Thank You”” to Nature (international weekly journal of science) and its recently published study of identical twins with the same genetic risks for developing Multiple Sclerosis, yet one does and one does not. 

“genetic factors seem to have been insufficient to cause disease on their own … although both twins had the same predisposition for the disease one was exposed to the perfect combination of environmental triggers”

What triggers? Well, The Multiple Sclerosis Resource Center of Essex, UK offers one of the most extensive collections of articles on environmental (nurture) factors, 
Environmental Factors And MS Research including studies related to smoking, gender, vitamin D, geography, climate, MS population clusters, Persian Gulf War, barium, and medical employment.

In our two decades of living with Multiple Sclerosis as a family, theories about causes ebb and flow. You cannot get too worked up about any one study or alleged breakthrough.

Yet as parents … genetics is one boogeyman you can never quite banish back under the bed. “An incredibly important negative” IS welcome any time.

Caregivingly Yours, Patrick Leer
web site: 

Sunday, May 02, 2010

diagnosis sharing

Chatting on the phone, good naturedly ribbing a friend about dodging something planned for the immediate future I inadvertently boxed him into sharing a diagnosis of Amyotrophic Lateral Sclerosis (ALS)

I hung on the other end of the phone in the loudest silence I have ever heard.

What insightful, thoughtful remark could I offer to break the silence? … “Can you still drive?”

Geesh! Where in left field did that question come from?

No wonder people facing a life altering diagnosis may choose to keep it to themselves for as long as they can. How many times a day can you play 20 questions?

One of the most frequent emails I get is from friends and families trying to ‘share’ the time following diagnosis of Multiple Sclerosis. Our story of Patti’s diagnosis of probable MS was explored in an earlier entry, “the call”. My father concealed his diagnosis of pancreatic cancer for the better part of a year. 

Diagnosis is so much more than a word.

Caregivingly Yours, Patrick Leer
web site: 

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