Tuesday, January 30, 2007

Caregiving: "MS may be 50% more common ..."

             Multiple Sclerosis Rates Up 50%


Multiple sclerosis (MS) may be 50% more common in the U.S. than previously thought, according to a new research review.


Almost one in 1,000 people in the U.S. have MS, according to the review.   findings appear in the Jan. 30 issue of Neurology.


    * Alzheimer's disease: 67 in 1,000 people 65 or older

    * Parkinson's disease: 9.5 in 1,000 people 65 or older

    * Autism spectrum disorders: 5.8 in 1,000 children

    * Cerebral palsy: 2.4 in 1,000 children

    * Stroke: 10 per 1,000 people

    * MS (Multiple Sclerosis): 0.9 in 1,000 people

    * ALS (Lou Gehrig's disease): 0.04 in 1,000 people


… they say their findings show "the burden of neurologic illness affects many millions of people in the United States."


(click on blue headline for full article from WebMD Medical News)

Monday, January 29, 2007

Caregiving: "I was going to help, but ... "

People who basically do nothing neither for good nor bad have been irritating other people for centuries.


I was going to help, but …”

I almost helped, but …”

I wish I could help, but …”


I was reading an entry in another journal Please don't take life for granted, and I was struck by Lisa’s comments on how these non-committed offers to help really can impact people who are dependent on others.


As a spouse caregiver, I too have heard it way too often and could fill pages with my theories about my fellow humans.


I could not get through the endless phone conversations with medical insurance bureaucrats without my voodoo doll (pictured above). … When I hear, “I really wish there was something I could do to help, but …” I stick a pin in some body part of the voodoo doll. It’s kind of weird how it rattles the person on the other end when I ask them how their arm or leg or head is feeling. <grin>  


This ‘sin’ of non-commitment isn’t new. Almost 700 years ago the Italian poet Dante Alighieri in his masterpiece “Commedia” damned the souls of people who do not take a stand in life to their own special place outside the gates of hell. In Dante’s Inferno they are forever pursued and stung by wasps while maggots drink their tears and blood. … The mafia may be more forgiving than the wrath of an Italian poet. <grin>


Considering all the above … anyone may want to think long and hard before ever beginning a sentence, “I was going to help, but …” 

Saturday, January 27, 2007

Caregiving: Pennsylvania Farm Show

Imagine for a moment that you can never leave the person you are with unattended for the duration of your outing. No popping into an opposite sex bathroom, no just running into a store to get something, no go getting the car to bring it around, no anything where you leave someone out of your sight for even the briefest moment. 


Any successful outing has to be “symptom” customized. In Patti’s case plans must incorporate visual impairment, non-ambulatory, incontinence, dysaphagia, and cerebral issues such as emotional lability, memory loss, and mental confusion. Physical symptoms are reasonably manageable, cerebral symptoms are wild cards.


Picking the right places, activities, and customizing reduces potential frustration level which in turn reduces the chances of emotional flare ups.


One of our favorite yearly outings is the Pennsylvania Farm Show. It’s perfect for the above formula especially with 25 “indoor” acres to wander around (the equivalent of 19 American Football fields). Everything is extremely “hands on” so proximity is optimum for visual impairment. You not only see farm livestock you can interact with the critters. The same with produce and agriculture except that Christmas trees and pumpkins aren’t as fun as cows or alpacas.


We are not farmers so there is always a sense of wonder in visiting their world. And for whatever reason farm animals find people in wheelchairs apparently equally interesting. Patti particularly enjoys visiting with the goats as they futilely try to eat her wheelchair each year.


Oh! About the “yuk” picture. Patti has a ‘cognitive issue’ of way too loudly and rudely “yukking” things she personally does not like. Recently it has been poinsettias. We found ourselves in an indoor “field” of poinsettias which were being insulted with a barrage of loud and louder “yuks”. As I was trying to shhh Patti, I noticed the sign behind her and couldn’t resist the picture. “Mr. Yuk” is a pesticide safety program of Penn State University.


This pictured sculpture of the Liberty Bell and Ben Franklin is made from 800 lbs of Land o’ Lakes butter. After the Farm Show the butter sculpture was converted to biodiesel by Fry-o-Diesel a Philadelphia company which has developed technology to convert waste greases from restaurants into high quality biodiesel.


Hey, the more alternative fuel sources the better! Why not add those good old greasy diner aromas to the fumes of rush hour? <grin>

Monday, January 22, 2007

Caregiving: Why do good?

I found this interesting food for thought …


Why Do Good? Brain Study Offers Clues


“People may not perform selfless acts just for an emotional reward, a new brain study suggests.


Instead, they may do good because they're acutely tuned into the needs and actions of others.


Scientists say a piece of the brain linked to perceiving others' intentions shows more activity in unselfish vs. selfish types. 


"It's not exactly empathy," … but something more primitive.


… a whole other brain region, called the posterior superior temporal cortex (pSTC), kicked into high gear as altruism levels rose.


The pSTC is located near the back of the brain and is not focused on reward. Instead, it focuses on perceiving others' intentions and actions…


This type of perception would have allowed humans' more primitive ancestors to quickly pick out a potential threat -- a crouching lion, for example -- from amid a mass of less important stimuli.


The bottom line … is that altruism may rely on a basic understanding that others have motivations and actions that may be similar to our own.”


(click the blue headline for the full article)

Tuesday, January 16, 2007

Caregiving: level of disability

Multiple Sclerosis complicates labeling because physical and cognitive symptoms progress differently in each person. Yet a numerical level of disability and ability is needed and used for communication within the medical profession. 


Numbers can be difficult to wrap your mind around. Pictured below are more visually oriented graphs of Patti's MS progression and resulting disappearing abilities. 


Neurologists use the Kurtzke Expanded Disability Status Scale (EDSS) specifically for MS. Overall “level of disability” is scored on a scale from 1 to 10, with 1 being the least. Patti’s disability scores in the upper levels at 8.25.


Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are commonly evaluated on the Modified Barthel Index of ADL on a scale from 0 to 100, with 100 being “independent”. Patti’s 'abilities' score in the lowest percentiles at 10.


I believe it is advisable to periodically “quantify” Patti’s level of Multiple Sclerosis progression; and to ‘remind’ myself, family, friends, and readers of her dependence on others in measurable terms. 


Not everyone with MS may have this same level of disability. However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong)

Caregiving Metaphysics PROGRESSION

Progression drives caregiving and that frustrates the hell out of me. Multiple Sclerosis’ unpredictability has thwarted most of my attempts to anticipate it. “Psychic caregiving” might work, but I’m not that gifted.

An enigma of caregiving is that I’m locked in a fight I know I cannot win, while progression constantly ups the ante.

“Keeping Patti at home” was such simple sloganeering in the early years. Remodeling regularly to adapt to physical progression, and just raising the bar on my limits of endurance stayed the course for the first 7 years.

Progression to the double whammy of bowel and bladder incontinence and “dementia like” symptoms was the turning point. Our daughter and her friends returning from elementary school each day were encountering too much for kids that age to have to cope with. Patti’s cognitive symptoms prevented her from directing her own care and basically made part time homecare helpers impossible to incorporate into daily living.

Somehow for another 8 years, basically on my own, I still managed Patti’s care and the environment to keep the house a home. Progression however kept increasing “at risk” situations for Patti. It was more than scary when Patti started a fire on the kitchen stove while unattended. Catheters were experimented with but Patti would get confused and pull them out. Our new “physically” accessible home boomeranged on us as cerebral symptoms rapidly progressed. Falls actually increased, and Patti was pulling things down on herself. She was getting outside confused and disoriented.

Time was my kryptonite and after 15 years of “keeping Patti at home” Patti and I jointly explored and decided on the transition to the 24/7 care facility era. Patti has never expressed a doubt about the decision.

Nor have the nearly 3 yrs of the 24/7 care facility era been an end. ‘Hands on’ caregiving continues to occupy at least 40 hrs a week. The majority of afternoons/evenings each week I bring Patti home or out before transferring and ‘tucking’ her in to bed by myself at her care facility. This phase has been about evolution to professional team care and most importantly safer care.

Progression is the only constant in caregiving. It relentlessly crushes home caregiver motivation, inspiration, or whatever. I can not ‘sugar coat’ that reality. … On the other hand, if you can appreciate the esoteric reward from finishing your morning coffee then running full speed into an ever higher brick wall day after day, year after year, you will do fine. It can be done.

('series' to be continued ...)


Monday, January 08, 2007

Caregiving: Spring Weekend in January

After 61 years the record for high temperature on January 6th around here was shattered on Saturday peaking at 69 degrees. 


(Global Warming? Well, for Al Gore abnormally warm winters in the East certainly are not good personal omens. The last time it was this warm in the beginning of January was the year George W Bush was born. <grin>)


We seized this extraordinary Spring Day in January to do some scootering around City Island in the Susquehanna River. Over the last year, I help Patti to navigate with her progressing visual impairment by “follow my voice”. Of course, I’ve developed a dodge step, like a matador, to our routine. … It was Megan’s first experience as Patti locked in on her voice for scooter navigation. I forgot to warn Megan. <grin>


Colorado’s snow was nothing but rain by the time it hit our Spring temperatures and drowned the rest of the weekend. We adapted by playing indoors and enjoyed a final weekend with our Christmas Tree, our daughter’s last full weekend home from college, and the Philadelphia Eagles on TV advancing in the NFL playoffs.


Watching a TV football game with Patti especially one that goes down to the final play of the game has a special dimension because her MS related short term memory loss and mental confusion can send her rooting for any team, even teams that are not playing. <grin>


Getting an 18 year to participate in family pictures is more challenging than grabbing our cat as her designated stand in. (Notice the proper method to hold a squirming unhappy cat with extended claws away from exposed flesh <grin>.)



One of the Philadelphia Eagles players in response to a reporter’s question about continuing to overcome their season of adversity gave a sound bite answer that struck me as being larger than the game or even good advice for daily living … “We cherish every moment we get to play.” 


Thursday, January 04, 2007

Caregiving: choking / dysphagia

Holiday gatherings bring out the old pictures and tapes. This year a gem was rediscovered in a video tape of a 1999 news story featuring Patti and her parents.


Patti was choking to death … now in a little over 2 minutes the ‘magic’ of You Tube will retell the story and happy ending. Double click to play video.

Megan and I were home in Maryland when this occurred. 


On the MS progression timeline dysphagia was a remitting / reoccurring symptom in early 1999. Multiple Sclerosis can be dangerously deceptive. Accepting MS progression is challenging for family and friends as it is for the person with MS. “To care” demands vigilance.


Regardless of disease or health, emergencies will happen. Knowing how to ask for help and how to listen CAN save a life.

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