Multiple Sclerosis comparing apples to oranges

Reading about or hearing about others with Multiple Sclerosis may be best described as comparing apples to oranges. The diversity of symptoms and progression is that dramatic.

Wednesday pulling into Patti’s care facility to pick her up for a dinner outing, I notice her parent’s car leaving the parking lot. In just the minutes it takes to walk into her room and greet her I ask, “Who were you just visiting with?”

Patti: “My hubby I think.”

Me: “Then who are you visiting with now?”

Patti: (laughs) “I don’t know my memory sucks.”

And so does her visual impairment as I am standing right in front of her wheelchair. Multiple Sclerosis – it never gets any easier to understand.

Earlier that day I had read on a Facebook friend’s wall an anniversary wish:

♥ Happy 25th Anniversary!!! I love you! ♥

Except it was not a typical wish, it was from one spouse with MS (and a similar EDSS >8.5 scale score to Patti) to their caregiver spouse.

How can this be? Progressions of Patti’s MS physical and cognitive symptoms have prevented her from ever using the Internet, email, or social media. By the early 1990’s Patti’s MS speech and memory issues absolutely confounded the earliest voice programs.

Where the technology age has empowered many caregivers and extended homecare by enabling communication it has isolated Patti because of her MS symptoms. Patti can no longer even successfully use a telephone.

MS progression is no more predictable than it is standardized. With the diversity of MS symptoms and varying progression and equally important the range in abilities and resources of MS caregivers, I can only hope that those new to Multiple Sclerosis and/or MS caregiving never make the mistake of faulting an apple for not being a good orange.

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

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Despite MS, to Spite MS

How unique is this book? In the forward Jennifer Digman shares her research that there are 2,100 books on Multiple Sclerosis but only 5 about Multiple Sclerosis love stories.

How unique was reading this book? Because of MS symptoms Patti cannot read nor can she remember in the short term which in turn affects attention span. Reading it to her pieces of chapters at a time over the holidays was beyond interesting, at times outside my imagination.

At one moment I’m reading to Patti about Dan Digman who transfers his wife Jennifer from her wheelchair with the same one person unassisted transfer as I use for Patti except the guy has MS. Not only has MS but runs an 8K race in 43 minutes – damn, this guy is in far better shape than me and I do not have MS.

While Patti, who does have MS, makes skeptical sounds about a think positive snippet in one breath, laughs along with Jennifer’s take on something from their shared wheelchair view perspective in the next breath, and then abruptly decides she just wants to go to bed. MS attention span can be dizzying to deal with.

Spacing chapters are haiku poems by Judy Williams who also has MS. These capture Patti’s attention causing spontaneous comments and observations, a couple times leaving me to see the poem differently.

If ever I doubted it, this experience of reading “Despite MS, to Spite MS” with Patti has proven that Multiple Sclerosis is less a diagnosis and more a collection of Multiple Stories.

And, Now, We Pause for a Brief Commercial Message . . . Click “Despite MS, to Spite MS” to order.  A portion of the proceeds will benefit the National Multiple Sclerosis Society and Camp Courageous.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

Weird MS symptoms: cognitive falling

Watching Patti as she flails her arms, legs jerk and her wheelchair shutters from all the action I wonder if Patti is demon wrestling or I’m missing an earthquake.

Only seconds in duration and followed with an exclamation (some printable, some not), I steady her and ask – “you think you’re falling again, don’t you?”

Decades ago when Patti could still walk this weird MS symptom – cognitive falling (I THINK I’m falling therefore I WILL fall) - occurred more frequently and resulted in random falls from a standing position.

Vertigo? Hypnic Jerk? Inner Ear? Nystagmus? Myoclonic Jerk? Ataxia? Medication? All and more were considered, re-considered and dismissed.  Intermittent symptoms rarely ever fit all the criteria of diagnostic ‘billing’ codes.

I have never observed a pattern to any triggering activities neither then nor now except ‘intermittent and unexplained’. Frankly with the gap of decades unless you were me, you would not even notice the similarities.

Now in a wheelchair Patti is not at actual risk of falling from a standing position, though awareness is warranted. Even such a brief episode during assisted transfer or eating could certainly have at risk consequences.

And, of course, never does a weird MS symptom actually occur during a visit to a neurologist - well except just once decades ago when Patti could still stand.

Patti’s neurologist had just finished poopahing Patti’s recounting of cognitive falling. He was quite adamant that the human body does not fall because it “thinks it is going to fall”.

As he put Patti through her neurological exam (if you have never observed one, it borders on human pet tricks), Patti announced “It’s happening! I’m going to fall!” Her neuro calmly and professionally reassured her “No! You are not! Your legs are fine. There is no …” - Patti grabbed him for support and they both ended up on the floor.  

After I helped them both up, we at least learned that when a ‘weird MS symptom’ lands on top of a neurologist it becomes an “observed” unexplained intermittent symptom.  

Fortunately decades later, cognitive falling while weirder is at least safer.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer