Multiple Sclerosis Assessment Tool

As a Multiple Sclerosis spouse caregiver of 21+ years you develop skepticism among many other ‘skills’ through the years.

So when I received an email from Danae Matthews of Forward Health about a …

 Multiple Sclerosis Assessment Tool  

“This is an on-line resource to help viewers assess their current conditions … I think this tool would be an excellent resource for readers of your blog and I encourage you to check it out.”

Well considering that MS is just so plain weird and individual I took the bait …

Surprisingly this assessment tool was almost right on with Patti’s EDSS score and was not fooled by non-MS me taking it.

While I am not qualified to endorse assessment tools, I can see uses for this: 

• Improving MS awareness among family and friends. How much do they know about ‘your MS’ and severity, progression, impact on abilities, etc?
• Like any language skills caregivers/carers need to practice and this was excellent for neuro-speak. Time spent at medical appointments can only be improved when you speak the language.
• Knowledge is power. It seems to me an empowering starting point.

Additionally that skeptic in me must offer that I noticed ‘tysabri’ is in the web address and a Tysabri ad displays at the top of the tool, so they must have something to do with it. Opening the Forward Health site it does display like a who’s who of Big Pharma, however running the tool left no spyware or prying cookies behind on my PC. Though I should qualify this by saying I use the full AVG version anti-virus/anti-spyware and as a double check ran Spybot afterwards as a confirmation. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

accessible fruit: donut peaches

(re-posted from August 2009)

Accessible fruit! Who would have thought?

With Patti’s Multiple Sclerosis progression holding and eating some of her favorite foods has become too challenging. As her spouse caregiver, I am always on the look out for solutions and options that can enable her.

Stopping at a road side fruit stand I discovered Donut Peaches (aka Saturn Peaches, aka Angel Peaches, aka Chinese Pan Tao Peaches).

Patti loves peaches. However MS progression was making holding and eating a peach next to impossible. That is until we tried “accessible” donut peaches! They were a hit, easy to hold and easy to eat!

Don’t just take our word for it. Mother Earth News offers the top reasons to eat a Donut Peach:

1. They taste better than other peaches. They're sweeter, with almond overtones.


2. They are lower in acid than other peaches.


3. The pit doesn't cling to the flesh, so it's easy to pop out with your thumb.


4. The fruit's thin, red skin has little or no fuzz.


5. Their small size lends itself to being eaten out of hand.

You just have to like a snack high in Vitamins A and C and only 37 calories per peach.

Thank God when nature lends you a hand.
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... and unlike the summer of 2009, this summer they are readily available in the produce section of Giant Food grocery stores at least here in Pennsylvania.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

NMSS neck cooler

Heading out Friday in 102°F (38.9°C) heat, who knows what the ‘heat index’ was – the only thing that mattered was the ‘smile index’.

Patti’s NMSS Neck Cooler is a godsend for that passage between air conditioned buildings to our air conditioned wheelchair accessible van.

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RE-USABLE COOL NECKWEAR

1.                Submerge in water for 30 minutes or until 90% inflated.

2.              Place in refrigerator or cooler for 15-20 minutes before use

3.              For best results rotate neckwear every 20 minutes in ice or refrigerator

4.              After using hand wash hang to dry. To re-use repeat.

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I know you can buy such things commercially but ask you local NMSS chapter first if they have any to give away. We got ours in a goodie bag from a MS Walk. 


I keep it in a cooler along with a couple bottles of water - kind of a Multiple Sclerosis emergency road kit. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

remember when you remembered

July 20, 1985 it was 93°F (34°C) under sunny skies, ours was an unconventional wedding with outdoor ceremony followed by picnic reception - BYOCC (bring your own change of clothes)

26 years later it was 95°F (35°C) and well I guess we are still ‘unconventional’. Multiple Sclerosis has left only one of us still able to change their own clothes and only one can still remember.

26 years ago we specifically DID NOT promise to “love and honor … in sickness and in health, until death do us part.”

If you are trying to read anything into our story about vows and 21+ years of MS spouse caregiving - fugetaboutit.

We DID promise to “Love one another, but make not a bond of love.”

Maybe the story is best told through a wedding gift.

Largest on the gift table it was also the most baffling upon opening – a giant mixing bowl, 14” (35.5 cm) in diameter, 7” (17.8 cm) high it holds 9 quarts (8.5 l) and weighs about 8 lbs (3.6 kg).

Though 26 years later through Google, I now know it is a McCoy Stone Craft Pink & Blue Mixing Bowl #14 and to some a collectible though to us it remains just our ‘big bowl’.

People into symbolism will tell you a bowl is a symbol of nourishment, emptied and refilled over and over throughout life.

A big bowl is where a family works their practical magic, transforming ingredients into cookies, cakes, meat loaf, salads, etc.

More than ingredients also goes life; the good, the bad, and the ugly, laughs and sadness, hopes and fears, dreams and challenges. In that apparently empty bowl is the beneficence that turns people into family.

related entry: 25th wedding anniversary

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

summertime with multiple sclerosis

Summertime is just plain ‘enshrined’ in our culture.

Summertime is also the time of the greatest disconnect between living with Multiple Sclerosis and living without MS, the parallel universes are furthest apart.

Beach, backyard bbq, pools were particularly challenging in our past decades because I needed to juggle MS spouse caregiving and parenting our daughter, kind of like dodging heat for MS while trying to keep up with a heat seeking missile.  – and hey, somewhere in there I love the surf myself.  

“How’s Patti doing?” is not only polite and well intended but logical when meeting old friends or new people in the more sociable summertime.

You have to do an instant audience analysis of the inquirer’s MS knowledge and experience, but frankly after 21+ years of caregiving most people just want a short social answer. “Patti is safe” has been my summer 2011 response. Inquiring minds can always continue.

Heat exacerbates MS symptoms. Uhthoff’s Phenomenon can get so pronounced in Patti that if she is talking while I push her wheelchair out of an air conditioned building her speech will start slurring within yards of the door.

Sometimes you never really know if it’s summertime or progression. Until this summer, I would sit in awe of Patti’ apparent immunity to brain freeze as she would suck down a milk shake or slushy; yet now days she physically struggles to hold a cup and manages at best several sips and is done.  

Admittedly an unconventional medical barometer, but last summer she could hold safely a cigarette now she wears a fire retardant smoking apron.

Recent studies have demonstrated that outside temperatures trump even air conditioning. MS fatigue and fatigue in general leaves Patti wanting to “just go to bed” on most nights around 7:30 PM. Yet since June if I do not call ahead I increasingly find her already in bed immediately after dinner at 6 PM.

Or, I can always answer “Patti has an EDSS greater than 8 and her MS symptoms are exponentially multiplied by heat intolerance” – say what?  

She’s safe – surf’s up dude!

Pictured in over a quarter century of 'summer-time', my Dad died 14 yrs ago and Patti has not walked in 15 yrs – you ride the wind and surf as long as you can.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

Modifying the Brain to Avoid Pain and Increase Potential

Caregivingly Yours welcomes our first ever guest post. Patricia Walling is a web content designer in Washington State for several websites regarding the field of medicine and careers in health care, including Medical Transcription.

Christopher deCharms, who has a doctorate degree in neurophysiology, and his colleagues have made some amazing discoveries concerning the power of the human brain to control its own functionality. By using a mixture of Western technology and the medical concepts merged with the theories behind Buddhist meditation and self-awareness practices, deCharms has managed to allow people to interact with their own neural patterns. This interrelation of brain functions with perception and neural learning systems is quickly proving to be successful, particularly for those with chronic pain.

For years Buddhists have, as a matter of religious practice, been studying the interactions of themselves with themselves. Practices such as meditation make them more aware of the small things that happen within the body that most are wont to ignore. With increased technology in MRI and neuroimaging these processes can now be seen in real-time via virtual reality (VR) goggles by the patient. The patients who participated in the clinical trials were trained to selectively control localized portions of their brains and induce or reduce neural activity levels in the rostral anterior cingulate cortex (RACC), which is related to pain perception and regulation. The initial results showed a 44-64 percent reduction among chronic pain victims – not perfect, but definitely a start considering the relative infancy of this theory. Furthermore, the results were tested with control subjects who were fed false information. These subjects had no instances of success. Eventually, the subjects were able to take control of these patterns without the help of the MRI, showing that one can be trained to have a permanent sort of control over his or her brain functions.

One doesn't have to be well-versed in the health care (which runs the gamut from nursing to medical coding) to see that above and beyond pain, the potential for this sort of technology is amazing. Some of the things that deCharms discusses in his talk on TED.com suggests control over more obscure elements of neural functioning such as depression levels, addiction patterns and even physical performance. If the process can be developed to these levels, then the raw power that a human being will possess over their own development is evolutionary in its scope. Being able to re-route neural processes and “re-map” the brain could be used to heighten desirable mental patterns while eliminating negative ones, at the will of the individual. Some other tests performed by deCharms and his colleagues show similar control over the somatomotor cortex, which controls muscle group activation. Again, the training was shown to be useful even after removing the MRI.

Evolution has always played a role in the development of humans. Between neural technology and genetics, it seems that humankind may have finally reached a point where evolution will be self-induced. A more detailed explanation of deCharms’s studies can be found on the Proceedings of the National Academy of Sciences (PNAS) Web site. Wherever this technology goes, it can certainly lead only to a more enlightened and learned view of the human mind.

politics of caring

When did caring become labeled as ‘entitlement spending’? Safety nets for our own people are what we brawl over? 

"I cannot guarantee that those checks go out on August 3rd if we haven't resolved this issue. This is not just a matter of Social Security checks. These are veterans' checks, these are folks on disability and their checks.” President Obama, July 12, 2011

That sure reads like taking political hostages of people who least deserve to be worried.

People who care for someone or need care themselves represent almost a third of all Americans, yet our unique challenges and situations divide us; some are young, some old, some physically challenged, some mentally, some need attended care, some do not. 

“Taxes are what we pay for civilized society.” Oliver Wendell Holmes Jr.

Politically we are no different than ‘normal’ Americans; some are Democrats, some Republicans, some Independents, some don’t give a damn, some blame military spending, some blame Bush tax cuts. The difference is that for more of us and those we care for; Reagan may be President, or be too overwhelmed with pain or just trying to get through the day with a chronic illness or disability to think bigger.

President Obama is right about one thing - this is not just a matter of Social Security checks. These are veterans, these are folks on disability.

If there is going to be a donnybrook over caring and safety nets for our own people – now is the time to be heard loud and clear.

Contacting the Congress: A Citizen’s Congressional Directory

Contact Elected Officials: USA.gov

Avoid the easy to send boilerplate ‘contact us’ forms. With just another click or two you can find their website with email, twitter, facebook, phone numbers and snail mail address.

Remember they have to know you are a constituent. You must include your name and address. Anonymous ranting accomplishes nothing.

Use your own words; it’s your point of view. Try to be courteous but more important specific and to the point. Above all, be heard - now!

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

wheelchair accessible van parking

Wheelchair accessible van parking usually is somewhere between what ‘should be’ and the reality of what is.

According to Americans with Disabilities Act (ADA) Handicap Accessible Parking Regulations:

Van Accessible Spaces must provide an access aisle that is at least 8 feet wide next to the van parking space to permit a person using a wheelchair or scooter to exit or enter a van with a side-mounted lift.

That access space is always clearly marked with boldly striped markings on the ground.

Yet too often we will find another vehicle with a disability parking plate or placard squeezed into that loading space.

While not a problem for us, as I can always climb in and maneuver the van to deploy the ramp - however a wheelchair user / driver is screwed having no choice but to wait for the other driver to return and move their vehicle.

So I must give a blogosphere shout out to Hollywood Casino at Penn National Race Course! I was stunned to see such a completely sensitive, low tech, ingenious and effective solution to the problem when we visited Friday evening.

By simply drilling a couple holes in concrete and adding a plastic pole with reflectors they have made that adjacent loading space impossible for cars to park in yet leaving it completely functional for deploying a ramp or a lift.

It may be worth a pilgrimage just to see what is possible when a facility actually ‘tries’ to be accessible rather than ‘complies’. The ingenuity and simplicity leaves me in awe. 

“don’t forget the cannoli!” …

     Fugetabout a MS unfriendly forecast of hot and humid with showers. Instead we spent about 3 hours in a fun air conditioned environment with the freedom to choose to smoke or not smoke. Appealing physical therapy for Patti alternating right and left arms pulling slot machine handles. Watched horses race in the mud and people whoop and holler playing dice. Enjoyed some cannoli and lost a total of $2.50 playing slots. – What’s not to like when you can spend an evening out for under $10 anywhere anyhow?

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer 

a special providence in caregiving

Would it surprise you to know that the “golden years” are nothing more or less than a catch phrase of an investment firm advertising campaign from the 1950s, no more real than “finger-lickin’ good” or “where’s the beef?”

Long, healthy, and productive lives? “The U.S. ranks last overall with poor scores on all three indicators …” How the Performance of the U.S. Health Care System Compares Internationally

“Roughly 12 million Americans of all ages need long-term supports and services because of disabling conditions--for example, multiple sclerosis, dementia, Parkinson's disease, or the effects of stroke. These conditions hinder people's ability to perform a range of "activities of daily living," including basic personal hygiene and grooming, dressing and undressing, feeding themselves, getting in and out of bed, going to the bathroom, and walking or using a wheelchair.

About two-thirds of today's 65-year-olds are expected to need long-term services and supports to help them carry out these tasks at some point during their lives.” "Health Policy Brief: The CLASS Act," Health Affairs, May 12, 2011

To paraphrase Shakespeare, “There is a special providence in caregiving or needing care. If it be now, 'tis not to come; if it be not to come, it will be now; if it be not now, yet it will come—the readiness is all.”

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

4th of July care-cation

In memory we windsurf before Multiple Sclerosis; now I netsurf accuweather, waiting for temperatures to drop to a more MS friendly range.

Non-ambulatory Patti is dependent on others for not only needs but sometimes ‘motivation’. Just getting out of bed to deal with MS symptoms is more of a challenge than any waves or wind of yore.

Saturday (July 2^nd) evening I picked Patti up from her care facility for an outing to City Island in the Susquehanna River.

With its abundant accessible parking and whether planning to enjoy the island itself or roll and/or walk across the pedestrian bridge to Harrisburg’s Riverfront Park, IMHO, it belongs in an accessible hall of fame.

The West side of the island felt probably 10 degrees cooler in its deep shade with a gentle breeze off the river – if Hollywood could make a summer evening moment for MS this was it.

Riding the City Island Railroad, listening to the sounds of oldies filling the air from the Metro Bank Ball Park sound system, just watching sunset in the sky and on the river enjoying a summer breeze - it was an evening in Accessabilityville.

Sunday (July 3^rd) while steamy was MS proof. A picnic at Patti’s parents’ home offered the best of both worlds - an outdoor cookout consumed indoors in air conditioning.  

Monday (July 4^th) we got an early morning jump on summer heat heading out early to “Anything Floats” in Boiling Springs. Expecting parking to be a challenge because it’s a small town I was stunned when the first officer we encountered got on his radio and talking to other officers found and directed us to a wheelchair van accessible parking place right next to the lake.

Arriving before the crowds the sidewalks and lakeside was easily accessible and the float crews were unbelievably welcoming and happy to move whatever needed to be moved or pulled closer so Patti could easily see all the wild and crazy floats.

It was beyond refreshing to enjoy a weekend in time where “… certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness …” applied to everyone regardless of ability.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer