ALS Clinic

Yesterday I had my marathon appointment at the ALS clinic in Indy. My friend, Sharyll, and Stitch went along with me and we left my house at 0615 for my 0815 appointment. The first thing I noticed is that there were MANY people (inner-city hospital clientele) who are afraid of Stitch. Frankly, I find it somewhat amusing. He IS a BIG black dog, but how can you be afraid of a dog whose tongue is hanging out and whose tail is happily wagging????? He almost looks like he's smiling! The inner-city IS a different culture…that's all I can say.

How can there be a neurology clinic facility without power door entry? Well, there is one… I'm glad Sharyll was with me! I seriously think that everyone ought to spend an entire day in a wheelchair (without "cheating") once in their lives. It would change the world.

First, I was "checked in" … with questions about my functioning (there is an ALS "Functional Rating Scale"… my score is about 27 out of a possible 40). Next I saw the speech therapist and dietician. Basically I was encouraged to eat an afternoon snack (vs. going from 11am to 5pm w/o eating) and to do "relaxation exercises" before speaking so that my voice won't be so strained.

The respiratory therapist did my lung functions and I am doing great. She said I am the "poster child for BiPAP"... meaning that my BiPAP has allowed my breathing muscles to rest well enough that my respiratory function is being preserved. That was good news.

My "usual" neurologist wasn't there so I saw one of his colleagues. I liked him and felt that my issues were "heard" and discussed thoroughly without rushing. I'm going off of 2 meds and starting 2 new ones with hopes that some of my troubling symptoms can be diminished. One thing we discussed at length is how having "slow progression" is not always the good thing that people assume. It was interesting for me to hear that he often finds that people with slow progression have a more difficult time coping than those with rapid progression. It makes sense to me. To me, "slow progression" feels akin to having 100% body surface area, third-degree burns only not all at once…you get to get burned again day after day, one part at a time.

Next I saw the "crowd": the "Physical Medicine and Rehabilitation" doctor, the physical therapist, occupational therapist, orthotist (guy who does braces) and "durable medical equipment" guy. No big surprises there. I'm weaker on my left side; I was given a soft c-collar for head support when I'm tired. I got some "dycem" (sticky rubbyer-ish stuff that keeps things from sliding around) a "rocker-T knife" to cut food with. The P.T. recommended that I get a bed rail to help with turning in bed and getting out of bed. When Amy inquired on that for me today (I have an RX), she was told that Medicare/Medicaid won't pay for a bed rail because "eventually [I'll] need a hospital bed anyway". Welcome to socialized medicine.

After clinic I had lunch in the Riley Hospital cafeteria with my friends Ben and Sarah (I worked with them at Methodist). It was awesome to see them!! Of course, Ben, Sarah and Sharyll had to all compare their iPhone applications. It was funny! Sharyll has an app that "farts", Sarah has a "shotgun" that actually "cocks" and "fires" when you move the phone, and Ben has a virtual "light saber" complete with background music!

Then it was an excruciatingly-tiring, 3-hour journey home (the trip normally takes about 1.5 hours) since the service who transported me had to pick up another patient in Carmel "on the way" back to Muncie. All in all, it was a 12-hour adventure.

Stitch did great all day and he ate up all the attention (from the people who weren't afraid of him!). He was a great distraction for Sharyll and me during the exam-room waits between visits from specialists. He didn't even fart too much! J

Last night, my wonderful stylist, Terri, came over and colored and cut my hair. I was exhausted but so grateful to her for doing it. She did a great job and it is so nice to look in the mirror and see stylish hair! She is a GIFT!!!

Today I am tired. What a shock.

More later. Love, Claudia

Spring, Please!!

Why is it so HARD to wait?! Spring… balm for the wounds of January, February and March…sunny, mild days…flowers…GREEN. How I am ready for Spring! Well, wait, I must L

From WTHR Indianapolis today: "Bottom line to this forecast... enjoy today! Highs will reach the low 60s with mostly sunny skies. Tonight clouds will be on the increase ahead of our next storm system that moves in Sunday. Showers and storms are likely Sunday, some could be strong or severe. Then Monday, a chance of snow!"

Bah, humbug! Think spring!!

The Black Hole

I'm there….

The Black Hole
TGIF Today God Is First Volume 2, by Os Hillman
03-26-2009

"My grace is sufficient for you, for my power is made perfect in weakness" (2 Corinthians 12:9).

On February 20, 1962, at 9:47 A.M., the spacecraft Friendship 7 rose on a pillar of fire, piloted by lone astronaut John Glenn. Leaving the coast of Florida far behind, the space capsule orbited the earth three times, traveling 81,000 miles in less than four hours. As the craft began its descent from space, mission controllers in Houston received a warning signal. A sensor indicated that the capsule's heat shield was in danger of detaching. If the heat shield came loose during reentry, the capsule would burn like a meteor--and John Glenn would die.

Because radio waves cannot penetrate plasma, the spacecraft experienced a total communications blackout--what astronauts and mission controllers call a "black hole".

The minutes crawled by and the suspense mounted in the Houston control room. NASA engineers felt totally helpless. Finally, after five minutes of silence, mission controllers heard Glenn's voice crackling over the radio: "Friendship 7 to Houston?"

Shouts of joy shook the control room. John Glenn was coming home. Although neither Glenn nor the mission controllers knew it at the time, the heat shield was absolutely firm and reliable. The fears for John Glenn's safety during his black hole experience were unfounded.

If you've ever been through a major crisis, you probably know what a communications "black hole" feels like. While you are in the pit of adversity, you feel that your world is collapsing, that your life is out of control--and that God is silent. The silence of a black hole is deafening. You feel isolated and alone. You question God's love, His care for you, and even His existence.

But even when it seems that God is distant and silent, your "heat shield" is still there, firm and reliable. In your black hole experience, God is teaching you to go deeper into your relationship with Him. You may think that your life is out of control and burning like a meteor, but in reality God, your heat shield, still protects you from the fiery forces that surround you.

Mass email from "Margie's Daughter"

I just received a mass email.  Nice way to find out your mother is in a nursing home, but hey, at least she's apparently happy:

To all of Margie's "Presto" friends and family, just to let you know the latest news...
 
We recently disconnected the Presto service at Margie's request, and we are now unable to provide the service since Marge has moved into a skilled nursing facility in the ****** area this past Monday, March 16th.  If you would like to correspond with Margie, I'm sure she would LOVE to hear from you - so please feel free to send her cards or letters via U.S. Mail care of my address which is as follows:
                                    
Margie ****
c/o [my sister]

I will be sure to deliver Margie's mail to her ASAP at her new home since we visit daily.

Margie is doing GREAT - and she's adjusting to her new home amazingly well!!!  She's loving the specialized attention - and she's enjoying such things as being personally served three hot meals a day!  I've had lunch and dinner with Margie several times now, and we both think their food has been really good!  I personally think their dinner rolls taste like King's Hawaiian bread!  And would you believe the nurses have even asked if she would like coffee or hot cocoa when she's finished her meal! 

 

Perhaps as a "sign" or a positive twist of fate, when we visited on Saturday, March 14th to have Margie pick out her room, she even enjoyed three of her favorites at lunch - a hamburger, MILK, and ice cream!!!!   (For those of you who may not know...Margie sometimes calls herself "Wimpy" as seen in the old Popeye cartoons...and she loves milk so much she's been know to drink 2 1/2 gallons in one week!!!!  According to Margie, "It's the best drink in the World!")  :-)

We're getting to know Margie's sweet, new roomie, Willie - and her wonderful family members as well.  They even came into the dining room to introduce themselves to us before we'd even finished our lunch the first day Margie visited!  They heard Margie might be Willie's new roomie - and they wanted to come say "hi"!  A warm welcome, indeed!

 

Margie has started daily physical therapy and enjoys getting "out" and even referred to coming back to her room as coming back "home".  She's adjusting well - and was even laughing as we reminisced and talked about old times at dinner in the dining room the other evening.

Each day Margie has been happy - and as each day passes, her room is taking on her personality as we decorate it with her personal decor items, photos and belongings.

As Margie's hearing has deteriorated over the last couple of years, telephone usage has become quite difficult.  So please write to Margie - and I'm sure she'll be thrilled to hear from you.

All the best,

***** ******

Margie's Daughter

THERE ARE NO WORDS FOR HOW I FEEL.  

Hacked

My gmail account has been hacked so I apologize if you got email "from me" that is spam. I've taken steps to re-secure my account and hopefully that will be then end of it.

I am stunned by the crazy people in this world. Be safe out there. Love, Claudia