Saturday, May 16, 2009

Will the REAL Multiple Sclerosis stand up

I find myself reading journals written by people with Multiple Sclerosis and I ask myself how can this be?

Patti’s MS symptoms of visual impairment and inability to control hands and fingers prevent her from using a keyboard or mouse.

Perhaps voice activated systems, I ask myself? NO, Patti’s MS vocal impairments including slurred speech and inability to modulate plus cognitive impairments have whacked out any and all voice systems we’ve tried.

How can this be?

“And you may ask yourself
How do I work this?
And you may ask yourself
Where is that large automobile?
And you may tell yourself
This is not my beautiful house!
And you may tell yourself
This is not my beautiful wife!”

I read in these blogs written by people with MS about vacations, travel, cruises. How can this be? This is not our MS story.

I ask myself where Patti’s MS non-ambulatory symptoms are. What about the logistics of wheelchair accessible vans meeting them at airports?

I ask myself where Patti’s MS symptoms of total incontinence of both bladder and bowels are which determine range and logistics of travel? Patti’s MS cognitive symptoms prevent use of catheters, Patti amazingly survived pulling out a Foley catheter without rupturing herself.

What are these author’s secrets to living with MS?

"And you may ask yourself
Where does that highway go?
And you may ask yourself
Am I right? I wrong?
And you may tell yourself
My god!...what have I done?"

I read of people with MS and their work places. How can this be?

Patti’s MS symptoms at the time (slurred speech, numbness in fingers, cognitive and visual impairment) crashed and burned her prior career as a buyer for International Paper within a year of her first hospitalized exacerbation and prevented her from driving for everyone’s safety.

Are these authors driving with MS? How can this be?

Letting the days go by
Into the blue again/after the moneys gone
Once in a lifetime/water flowing underground.

Will the real Multiple Sclerosis stand up?

Same as it ever was...same as it ever
was...same as it ever was...
Then again maybe Kermit the Frog best asks the question how can this be?

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...


  1. Hi Patrick. I understand your frustration. Ever since BR's MS(tm) progressed to the point where he needed a hospital bed, travel has been limited to road trips, with one exception.

    We went to Las Vegas in 2008 for my 40th birthday. I figured if there was anyplace in the world prepared to handle special needs travelers, it would be Vegas.

    * Flying with a wheelchair is easy
    * Super Shuttle offers ramp shuttles for travelers in wheelchairs
    * Most major cities have ramp cabs that carry a passenger in their wheelchair.
    * The Mandalay Bay was willing to remove a bed from the room to make room for the hospital bed. Most others, we just make sure there is enough room for a roll-away when making reservations.
    * Found a Vegas medical supply company that rented us a hospital bed, hoyer lift, and commode/shower chair for the duration of the vacation -- delivered to the hotel room.
    * Bladder hasn't been an issue since BR got a suprapubic catheter. Outside of the infrequent accident, bowels are behaving. Traveling before then involved keeping a hand-held urinal close by. They make female versions, too.

    There are a lot of hurdles. If BR's bowel or cognitive symptoms were to progress, it would dramatically change the travel landscape.

    And everyone knows that people with real MS can't stand up. :-)

  2. I've not had the same experiences as either of you, but there is one thing that makes me chuckle. What is this business with hopping during a neuro exam?

    Seriously, I've never been asked to hop and hardly have to show off the walking on heels or toes. I never have to do the stand with your eyes closed business anymore either.

    One time just attempting the heel-toe walk it was apparent that I was seriously going to tumble to one side. The doctor quickly said, "go ahead and sit on the table." That's it, he let me off the hook.

    So, tell me, what's this about hopping?

  3. Patrick, I don't know what to say. My best friend in childhood I just reconnected with after not being in touch for over 20 years (found her on Classmates). She said she had been diagnosed with MS 10 years ago and had been in remission since yet look at Patti. I don't know why this is. I guess sometimes we won't know all the answers in our lifetime as hard as that is to accept.


  4. I would like to tell you that I admire all caregivers a lot.
    You are amazing people.

  5. Patrick - I first read this post last night and have thought about off and on since then. The continuum of MS experience is mind-boggling.

    While Skip doesn't have the same level of disability as your wife, she certainly has had significant impacts from the disease that have had profound impacts on both our lives.

    We used to travel quite a bit, even with a wheelchair needed and incontinence issues to deal with. But, I figured we had to travel as much as possible as soon as we could because it might not be possible later.

    And, now, later has arrived. Although my mind rejects this reality whenever I think of it, we know Skip won't be flying anywhere anymore. Air travel is too much for her. We are traveling less and only by car.

  6. My doc is leaning toward a diagnosis of MS for me. He wanted to do and MRI to confirm or rule out, but I haven't been able to have it yet, as I lost my insurance over a year ago and have been putting it off. Meantime, my symptoms continue to worsen. I know I don't need to be driving, but I continue to do so out of necessity. I suffer with the numbness in my fingers and arms. I deal with the cognitive and visual impairment, although the visual problems kind of come and go. I lose my balance sometimes while just walking across the floor. My legs ache almost all the time and fatigue. My Hubby started a new job. He has been told he would have insurance after being there six months, then he was told a year, but he'd have to pay for it. We barely buy groceries as it is with just him working. I lost my job due to inability to work a regular schedule. This ain't NO picnic! My heart goes out to your wife. God Bless you for taking such great care of her.

  7. Well written post. Both you and Kirmit ask so well.

  8. Patrick,
    I did a little post on your work.

    Please if there's anything wrong correct me.
    I'll put it at my other blog where there's place only for beauty and great initiatives.
    Thank you.

  9. I understand all too well what you mean! I have a son who suffers from a brain condition that has caused him great physical pain. However, there are those out there with the same condition who never had brain surgery or have minumal physical problems.

    I'm glad I found your blog. I'll be adding you to my reader's list!

  10. Patrick!!! I have an Award for you if you get the chance to stop by my blog.

  11. Hiya,

    Check by my blog, there's an award for you!

    Amelia XxXxX

  12. LOL I so get ya. I feel the sa,e way, but I remember my early MS days, I did it all, now life is differemt. The real MS is whatever a person is. Lisa---hahahaha You did luck out, some neuros MAKE people do that and watch them fall! Insane. Now, I am lucky if I cam get to a card game 5min away and last an hour.

  13. Well, I have been forced into silence because of the whole foster parent thing...we have one last newborn we want to adopt and then, then I can write about my MS again. On vacation I rented the wheel chairs everywhere, if not I would not have made it. Yes, I have kids, but we nap for three hours a day. And the cognictive issues overwhelm me. Don't be discouraged. I am appealing my oki


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