Wednesday, April 30, 2008

Medical Update

Hi all,

Up until the past few weeks, I don't feel that there has been much to report regarding my health. I've gotten progressively more fatigued, have more slurred speech, more trouble eating, yadda, yadda. The past couple of months things have taken a somewhat more dramatic (for me, at least) change. The most obvious new physical symptom I've developed is clonus. I had some jaw clonus (feels just like your 'teeth chattering' for no reason) for many months, but I now have clonus in my extremities. Unfortunately it is making my balance more unsteady. The other rather significant symptom I've developed is marked dyspnea (shortness of breath) with exertion...to the point where I can only speak in one-to-two-word sentences. I saw a pulmonologist in Indy last week and he has changed me from my BiPAP to a non-invasive ventilator at night (AVAPS) and has put me on a 6-week blitz of nebulized short-acting and long-acting bronchodilators as well as steroids. This, coupled with my immune deficiency (treating my inability to fight the bacteria that causes pneumonia) is a concerning development. Mostly, though, I just get frustrated because my phyisical activity and sleep are so negativly affected by my breathing.

So, you might see me in my wheelchair, or walking with a "rollator" walker. All this said, I don't think I "look sick" and I'm glad of that. I'm trying to get sun whenever I can to cast off the winter-pale and I laugh and joke as much as possible! Come join me on the deck or front porch! Bring your sense of humor...it is the only requirement.

Love, Claudia

Tuesday, April 29, 2008

Please activate prayer chains

In a nutshell... please pray that our situation with Medicaid is rectified! As it stands, I have a $927/month spend down (I have to pay that out of pocket on Medicaid eligible expenses before Medicaid will pay a DIME toward my medical bills). I have Medicare, but it is TERRIBLE insurance by itself.... so the amount I have to pay out of pocket would likely be the maximum which, incidentally, is almost 50% of our monthly income. Just as an example...IF Medicare covered 80% of my current medical expenses that could come to over $1400 per month...my IV Gammunex alone is close to $7000 a month and my AVAPS (non-invasive ventilator) is over $900 per month.

This could make us homeless or cause me to go without necessary medical care.

God is the only one who can change this. We have an appeal hearing on May 14th but were told outright that we will loose and owe Medicaid for everything they've paid for up to that $927 per month for each month since the change was made (5 months ago???).

Thanks for praying.

Claudia

Saturday, April 26, 2008

Coming to you live....

Well, it has been a while since I actually blogged about current goings-on and I thought it was time! I owe a couple of you emails (Cory!) but honestly I haven't been on the computer very much in the past 6 weeks or so. I have really seen a decline in my stamina and my arms are getting weaker so sitting at my computer has been a real drain. I'm working on some solutions to that, with the help of my friends Kent and Vicki. I'll keep you posted.

My breathing has become more of an issue of late, as well. I have found that minimal exertion leaves me short of breath and unable to speak in sentences longer than 1-2 words. I saw my neurologist a couple of weeks back and he referred me to a pulmonologist (lung doctor) who I saw on Friday. I was very impressed with him and am happy to say that we've at least got a "plan". My RT (respiratory therapist) came and traded out my BiPAP for an AVAPS, which is essentially a ventilator that is non-invasive. For those of you "medically inclined", the AVAPS has a tidal volume, rate, max/min IPAP (inspiratory pressure) and EPAP (expiratory pressure...sort of like PEEP). The pulmonologist ordered a gazillion labs to make sure that some other medical problem (besides my ALS, asthma or obstructive apnea) isn't contributing to my breathing problems. He thinks that it is likely a combination of my ALS and my asthma. So, I get to start on nebulized steroids and long-and short-acting bronchodilators.

My balance sucks at times and my legs just feel weak after I walk. I am using my wheelchair more when transportation allows me to take it 'with'. Unfortunately, our wheelchair van spent a month in New Whiteland with my buddy Kent in charge of getting it fixed (which he did....God love him!). We got it back last Monday and yesterday we drove it for the first time and the brake light is on and the brakes are NOT working right. SO.....here we go again.

The good news is that we are all healthy and Phillip is even here visiting this weekend. It is so great to have him around. He has become such a wonderful young man. He is eager to help and is always very polite. He calls Amy and me "darling" and "my dear" (and Christopher is "buddy", "bud" or "bro"). I can't believe that he will turn 21 in less than 2 months!

Catherine is finishing up her first year of her master's degree at ISU. She taught freshman English this semester and has gotten a real dose of "what is different between an 18 year old and a 22 year old"! Light years! And (as those of you old geezers like me know) there is more revelation to come! Look at the chasm between 22 and 30!

Christopher is eagerly awaiting the arrival of the "baby mantis[es?]" (plural...we have 5 mantis egg sacs in our yard). I'm just ready for us to have the last freeze solidly behind us so that the beautification of the yard can begin. I am so excited because Michelle and Aaron Hoard are bringing some of their church friends up on May 4th and will help get some of the weeds pulled, and some other yard "sprucing" done! (Thank you guys!)

It has been a beautiful week here in central Indiana, but alas, the second of two cold fronts in as many days will move through tomorrow and next week is supposed to be quite a bit cooler....but we'll warm up again soon after that! I'm ready for get-some-sun-on-the-deck weather!!! I am SO sick of being couped up indoors! I have some small flower plants started from seeds (too early) and a couple of geraniums to put out as soon as the frost danger is passed.

Well, that's about it for now. No philosophy, religion or general sappy sentiment...just love from 'me to thee'.

~Claudia

Friday, April 25, 2008

Subject: Magnolias

I spent the week before my daughter's June wedding running last-minute trips to the caterer, florist, tuxedo shop, and the church about forty miles away. As happy as I was that Patsy was marrying a good Christian young man, I felt laden with responsibilities as I watched my budget dwindle . . . So many details, so many bills, and so little time.

My son Jack was away at college, but he said he would be there to walk his younger sister down the aisle, taking the place of his dad who had died a few years before. He teased Patsy, saying he'd wanted to give her away since she was about three years old!

To save money, I gathered blossoms from several friends who had large magnolia trees. Their luscious, creamy-white blooms and slick green leaves would make beautiful arrangements against the rich dark wood inside the church.

After the rehearsal dinner the night before the wedding, we banked the podium area and choir loft with magnolias As we left just before midnight, I felt tired but satisfied this would be the best wedding any bride had ever had! The music, the ceremony, the reception - and especially the flowers - would be remembered for years.

The big day arrived - the busiest day of my life - and while her bridesmaids helped Patsy to dress, her fiancé Tim walked with me to the sanctuary to do a final check. When we opened the door and felt a rush of hot air, I almost fainted; and then I saw them - all the beautiful white flowers were black. Funeral black. An electrical storm during the night had knocked out the air conditioning system, and on that hot summer day, the flowers had wilted and died.

I panicked, knowing I didn't have time to drive back to our hometown, gather more flowers, and return in time for the wedding. Tim turned to me. "Edna, can you get more flowers? I'll throw away these dead ones and put fresh flowers in these arrangements." I mumbled, "Sure," as he be-bopped down the hall to put on his cuff links.

Alone in the large sanctuary, I looked up at the dark wooden beams in the arched ceiling. "Lord," I prayed, "please help me. I don't know anyone in this town. Help me find someone willing to give me flowers - in a hurry!" I scurried out praying for four things: the blessing of white magnolias, courage to find them in an unfamiliar yard, safety from any dog that may bite my leg, and a nice person who would not get out a shotgun when I asked to cut his tree to shreds.

As I left the church, I saw magnolia trees in the distance. I approached a house... No dog in sight. I knocked on the door and an older man answered. So far so good . . . No shotgun. When I stated my plea the man beamed, "I'd be happy to!" He climbed a stepladder and cut large boughs and handed them down to me.

Minutes later, as I lifted the last armload into my car trunk, I said, "Sir, you've made the mother of a bride happy today."

"No, Ma'am," he said. "You don't understand what's happening here."

"What?" I asked.

"You see, my wife of sixty-seven years died on Monday. On Tuesday I received friends at the funeral home, and on Wednesday . . . He paused. I saw tears welling up in his eyes. "On Wednesday I buried her." He looked away. "On Thursday most of my out-of-town relatives went back home, and on Friday - yesterday - my children left." I nodded."This morning," he continued, "I was sitting in my den crying out loud. I miss her so much. For the last sixteen years, as her health got worse, she needed me. But now nobody needs me. This morning I cried, 'Who needs an eighty-six-year-old wore-outman? Nobody!' I began to cry louder. 'Nobody needs me!' About that time, you knocked, and said, "Sir,I need you."

I stood with my mouth open.

He asked, "Are you an angel? The way the light shone around your head into my dark living room..."

I assured him I was no angel.

He smiled. "Do you know what I was thinking when I handed you those magnolias?"

"No."

"I decided I'm needed. My flowers are needed. Why, I might have a flower ministry! I could give them to everyone! Some caskets at the funeral home have no flowers. People need flowers at times like that and I have lots of them. They're all over the backyard! I can give them to hospitals, churches - all sorts of places. You know what I'm going to do? I'm going to serve the Lord until the day He calls me home!"

I drove back to the church, filled with wonder. On Patsy's wedding day, if anyone had asked me to encourage someone who was hurting, I would have said, "Forget it! It's my only daughter's wedding, for goodness' sake! There is no way I can minister to anyone today."But God found a way. Through dead flowers.

"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

If you have missed knowing me, you have missed nothing.
If you have missed some of my emails, you may have missed a laugh.
But, if you have missed knowing my LORD and SAVIOR, JESUS CHRIST, you have missed everything in the world.
May God's blessings be upon you.

THIS IS SO TRUE, BEING NEEDED IS SO UPLIFTING TO EACH OF US.

Thank you for blessing me by needing me and thank you for being patient with me as I learn to let you bless me. Love, Claudia

Wednesday, April 23, 2008

Things YOU take for granted.....

This thread is copied and pasted directly from the "Living With ALS" Yahoo group. It illustrates just one thing I have to look forward to. Over the next few weeks I plan on posting some of my thoughts on things that I took for granted -- that I can no longer. For now, this thread speaks volumes (pun intended):


1a.
My voice is getting weak and my speech quite slurred. Even my familyand caregivers have difficulty understanding me now. I'd like someinput from those of you who can no longer speak, or from CALS whocare/have cared for PALS who can no longer speak.I have a tablet PC with a suped up speaker that I can mount to mywheelchair. I use a HeadMouse to move the pointer, a toe switch toclick, and speech software.I've tried using the tablet a couple of times after church. Unfortunately, trying to say anything other than pre-programmedgreetings (hello, how are you, etc. ) was too slow. Mingling afterchurch over coffee involves small talk that is a bit more personalizedthan the "hello how are you" phrases, but is usually fairly short -"how's your wife doing after her surgery" or "tell me about yourtrip". And then you move on to the next person. My experience wasthat people just weren't patient enough to wait for me to slowly type.Have you experienced this? How have you dealt with it?I can't use the tablet in the car because road vibrations make myheadmouse move slightly, which causes the pointer to bounce around. How do you give directions? How can I chat during my 4 hour drive toALS clinic?How do you communicate when you're on the toilet ("I need anotherwipe")? Or in the shower ("I have soap in my eyes")? Or in the hoyerlift ("My hands are caught") or in bed ("I'm cold")?How do you deal emotionally with this?

1b.
I have the same problem with my voice. My suggestion to you is a memory board. You can find it on the following web page. . . http://www.alscare.com/education.asp#memoryPrint out both the board and the instructions. It works great when you don't have your voice machine. As far as driving goes I bought my wife a GPS and I gave up on trying to give directions while we drive. It's too distracting for my wife. And dangerous. Sorry to hear that you are having trouble. I wish we all had a miracle cure.

1c.
I wish I had an easy answer for you. Unfortunately every device I've come across has all those problems. I have learned to be an excellent listener. A lot of the time after I get home from a visit I will email the person with all the things I wanted to say but couldn't. Also, it helps if you or your caregiver reminds the person your speaking to to ask yes and no questions. Another thing I do is if, for example, I'm going to church. I will print a paper for my caregiver of things I would like to say to specific people. As for personal needs you really have to rely on your caregiver to know your signals that you need something. They pretty much need to anticipate your needs. I've learned to accept that I can't do or say everything I want and I just have to let go of it. It takes lots of patience on both sides.

1d.
I know exactly what you are saying and one thing i can tell you is what worked for me was i had my doctor write me out a prescription for xanax and it helped me enough to the point that i could deal with handling people moving on with the conversation while i was still on the first topic.I would go back to it and if they acted like it bother them i would just act like i knew what i was talking about (which i did) and smile at them. Then it was up to them to remember and put my response with the topic that it went with. After a couple of times of doing that and i learnt who my true friends were and who was rasied right to go back and be cool about it. Does any of this make sense? And i will be honest a couple of times i have asked them 'If you were sitting in my chair would you want to be treated like you just treated me; being rude and rolling your eyes and mumbling under your breath because let me tell you that isn't very nice?!" After i done that a couple of times then they started slowing down which allowed me to get in and follow along with the conversation.I have made quite a few friends like that and i have lose a few too!!I hope i have helped a little bit.

Monday, April 14, 2008

Prayers Needed

I have mentioned that the past couple of weeks have been a challenge....Christopher started feeling better last night...and this morning Amy woke up sick as a dog. So, I'm trying to do what little I can for her (at least when she gets sick she knows to head to the BATHROOM) and entertain Christopher. My friends are all otherwise committed.... work (most of them) ... and my poor friend Julia had her second surgery (2 in 7 days) last week and Sharyll's husband is still injured and needing help from his car crash last week. Thankfully, Janie brought us some groceries yesterday (THANK YOU, JANIE!) and Sharyll is going to try to get Fred settled for a while and come over...long enough to at least help get the laundry and dishes caught up.

So far, Christopher is being super good....we are laying in my bed watching "Sprout TV". I am grateful for every minute he cooperates!

Poor Amy is miserable. Hopefully the motrin and phenergan suppository will help her rest and ride this out.

Please pray I don't catch the bug. I've been a maniac with antibacterial wipes and alcohol hand gel, but there's only so much you can do in a small house with sick people nearby.....

The good news is that I CAN still walk, and get to the bathroom by myself, and feed myself. I don't know how God's going to fill in the gaps when I get to the point where I can't take care of myself at all... let alone Christopher and Amy. It is scary for me.

If you have ALS and you have a family caregiver, consider how blessed you are....what's more, if you have a family caregiver who allows your spouse to work and maintain a relatively "normal" family life (kid's ball games, shopping, work, eating out) you should consider how much MORE blessed you are!

Love, Claudia

Saturday, April 12, 2008

Life's Challenges

Exhausting. That pretty much sums up the past 2 weeks. Since my last post, we've had several appointments and outings. I love getting out and seeing things besides the walls inside my not-so-huge house, but I pay the price. It is frustrating.

And Christopher is sick. He has a stomach virus. It reminds me of the 'bad old days' when he was in school and sick ALL the time. He had perked up a little this afternoon but still didn't feel well (this morning he was so weak I was worried). It is so hard for me to not be able to be the hands-on mom and to watch Amy take care of him (she does such a wonderful job, but I feel so helpless to help him). At least he let me lay down with him for a while this afternoon and rub his back. Here's his pitiful self about 5 PM today, trying SO hard not to cry and to be a 'big boy'. He'll always be my baby, though:

video

He's still got a fever and dry heaves....but we're managing to keep ahead of dehydration with tiny sips of water. Just pray that neither Amy nor I get the bug (oh bad!).

Love, Claudia

Monday, April 7, 2008

Big Day

It was been a beautiful weekend and I've been frustrated by my limitations. My strength, stamina and balance are definitely worse than last fall. I tried to do some simple things outside but found myself so short of breath that I could only speak in two-word phrases and literally collapsing into bed exhausted from picking up a few dried leaves!

Today was beautiful too... probably the prettiest day of the three (warmer and sunny) but I spent it at I.U. Hospital seeing my neurologist and getting some pulmonary function tests. Now, I just want you to know that I have the coolest neruologist on the planet. He is awesome (and has been from 'day one' -- even though that day he told me I had ALS and not Myasthenia Gravis...which would have been my preference, had I been able to choose). Today's visit was no exception. He always displays great respect for my thoughts and has a great sense of humor.

After a discussion with Dr. P about my pulmonary function being affected by positon (sitting, laying down) a crack was made (I won't say by WHOM) about how function would be affected by being inverted...which led to a conversation about Stephen Hawking taking a ride on the "Vomit Comet"...the NASA aircraft that flys in a way that simulates weighlessness.

On my way out of the office, I was handed my obligaory stack of prescriptions. On top was this one:
Not ONE but TWO trips!!! THAT'S what I'm talkin' about! He cracks me up!
Now, the drama: While we were at the doctor's office my friend, Sharyll, got a call that her husband had been in a serious motor vehicle collision. We later learned that the driver of one of the OTHER two vehicles involved (a total of three were involved) was killed. Sharyll's husband is going to be fine, and they are very blessed....in spite of totalling their vehicle.
And, tonight, after I got home I had an infamous "first"... my first PUBLIC fall. No blood, no foul, but I'm gonna have some bruises. I never even got a look at the gentleman who helped Amy pick me up.....
Lots of love,
Claudia