Ups and Downs of ALS

What a week! Monday started the week on the upswing when I received a call from my ALSA rep letting me know that there was an unexpected opening in a stem cell clinical trial trial being conducted by TCA Cellular Therapy in nearby Covington, LA.  A quick call, phone screen and fax of the medical records and I was set for a Friday assessment for acceptance into the trial! YAHOO!!
Tuesday wasn't a bad day and that evening was our monthly support group meeting which means a chance for me to get out and visit.  We talked with Dora more about the stem cell trial, heard some encouraging stories and got some questions answered. I might even have a power chair loaner for tooling around Jazz Fest. We unfortunately welcomed a new PALS to the group, so sorry you qualify Vickie and met Tracy who has been fighting the beast for 4+ years.  Breakfast for dinner at IHOP and the excitement of the evening, this is an awesome week!
Wednesday's wake up elicited a grunt from my tired body and I slept in for a few extra hours while Gina and Ryan headed out to work.  The rest of the day was good and we decided we'd go get my haircut when G got off of work.  Knowing she was on the way, I headed for the shower so that I'd be getting out at about the time she arrived home and could help me get ready to go. While in the shower I felt my knees getting weak so I rinsed and went to get out...and the beast struck back. I missed the grab bar and down I went, on my arse buck naked unable to do much more than wiggle out of the way of the ice cold water flowing from the shower head.  Three tries and I got the water turned off, now what.  As I sat on the floor of the shower with my legs sticking out in the open, I checked myself, no blood that's good, nothing really hurts that's good and I hope Gina doesn't freak when she gets here.  I'm thinking can I pray in this shape? Remembering in Genesis that God knew when Adam put on the fig leaf, I figure Adam prayed nakie so can I.  Talk about humbled before the Lord; I prayed, Gina didn't freak and after some maneuvering she and Ryan carried me out and got me seated.  A deep breath, I hadn't had a fall in almost six months, a stiff lower back and a blow to the confidence, but all in all we survived it pretty well (at least G and Ryan are pretending they did).
I got trough the day Thursday, Gina came home at lunch and helped me out.  Life Group at night, we love this special group of friends and the spiritual support they provide.
Friday morning hopes were high as we headed to the assessment and I cranked up one of my Christmas presents from son Kyle, Led Zepplin IV on the ride over, sweet!  FDA was in the office but nurse Teresa was as cool as Scott said, filled us in on details and history of the company and trials. Dr Lasala came in and I am accpeted as PALS #10, great news!  We did discover that one of my prescription meds needs to be stopped for thirty days before the procedure takes place, so now we are shooting for the end of March or early April for the first step.  Finished Friday afternoon in beautiful weather at the ballpark watching a baseball game, and then to my sister's house for the weekend.
Saturday some sun and a softball game before resting in the recliner while the girls got their nails done.  Early dinner and I skipped the parade to stay home and watch The Social Network with my Mom and Dwight and my honey.
So there you have it, a week of ups and one big down, but I'm here and ready for more, maybe not Aaron Rodgers championship belt ready, but good enough to wear nurse Teresa's tiara! Dang I look good!

Friends

First, an update on last week's post: following the blog, we had a TV appearance and newspaper article that told our story.  On Monday, the officer who denied the request reversed his decision and granted approval for compassionate relocation. It still must go through chain of command for approval but we do not expect any obstacles, and hope to have Sean back in Louisiana soon.  Thanks for all of your support!

Now if you facebook, you've probably seen this status from someone this week:

 It's been said that everlasting friends can go long periods of time without speaking and never question the friendship. These types of friends pick up like they just spoke yesterday, regardless of how long it has been or how far away they live, and they don't hold grudges. They understand that life is busy...but you will ALWAYS love them

Well, I am blessed to have a group of friends who fit this description perfectly.  Today I had a visit from two guys I spent so much of my youth with.  Joe Abe and Ron Boone were part of the fantastic crew who worked the Harrison Ave Winn Dixie in the late 70's early 80's.  We worked, played, partied and did those crazy things young people do and NEVER tell their parents about...we fell in love (Joe is married to my former next door neighbor Doodis Ann) together and raised our kids, Joe is our daughter Brigid's godfather.  The thing is we haven't seen each other in at least 10 years!  When Joe found out my diagnosis, he knew right away that ALSucks, his friend Brenda passed away this week after a two year fight with the monster.  So we visited, laughed, amused Ryan with stories of  our "adventures", caught up on the kids and families, shared a lunch and basked in a friendship that will never end.  I am so thankful the made the effort to take a day away from home and drive the 2 1/2 hours each way to make my day!

I am also overwhelmed by the support my Tulane Pi Kappa Alpha brothers and sisters have shown in putting together a reunion at this year's New Orleans Jazz Fest.  So far about a dozen college friends are coming from all over the country to share in one of my favorite events. What makes this special is my first real symptoms where I knew something was wrong occurred at last year's fest. I know the food and music will be amazing as usual, but having the love and support of Loady and his bride Kim, Donna Jo, Des, JB, Belushi and Jeff will make it easy to be back there. Again it's been quite awhile since I've seen most of them, but looking forward to picking up where we left off.


If things go as planned, next weekend will be spent at yet another friends house.  Paul is an amazing man of God who has been a mentor, teacher, visionary, encourager, partner and brother to me.  He literally changed my life! We are always amazed that since the day we met we have been so in sinc that he says we're twins from different mothers.  We've both faced some huge challenges the past six months, but that just shows we're still hooked up!  We'll see another set of friends while there, David and Anna, but once our kids marry each other in June, we'll be family! Hope we even get some time with Justin and Yvonne, although it's only been a year, I miss you guys terribly and am praying for your Dad big time.


So you can see how blessed my life has been! My very large loving family and all  these great friends, what could be better than that!  Now if anyone can find Cliff Ford and get us back in touch, that would bring a big smile to this face!

The Struggle

Today I am engaged not only in a struggle with the most vicious of diseases, but also with the US Army for my son.  So let me tell you the story: First, we have three sons proudly serving in the military; we supported their decisions to join, attended graduations and homecomings, and sincerely believe that serving has benefited our boys.  Sean has already served two tours in Baghdad Iraq, Kyle is currently serving in Kandahar Afghanistan and just last week Nolan received news that he will deploy next January; our sons have not shied away from the duties they committed themselves to.
When I was diagnosed with ALS, the reality of the two - five year life expectancy deeply effected everyone in this amazing family I've been blessed with.  We spent Christmas Eve discussing advanced medical directives, end of life care, PEG tubes, tracheotomy and ventilators > good old family fun.  Sean is currently stationed in Hawaii with his unit set to deploy in March for at least a year. Knowing the future for me is uncertain, in November he applied for a compassionate relocation to Fort Polk, LA where he could be just a couple of hours away and able to come home on weekends to visit and help relieve Gina of some of the care taking duties. Again, Sean is not looking to get out of the Army, just close enough to support the family who has supported him.  The Army, specifically Capt Adam McCombs, first played the delay game, and did not even give Sean a reply until after January 1st.  At the time he was told that his request was denied because he "has other siblings who could help."  Sean has tried to get the decision revisited and maintained his professionalism while this matter weighs heavily on him; he recently completed a two week training to prepare for the impending deployment. We have contacted our Senators Landrieu and Vitter, and I have appealed directly to Capt McCombs but so far to no avail.  We are now seeking media attention to plead our case in the court of public opinion because we know the one thing the Army does not want is bad publicity.  If you can help, or know someone who can, please contact me!

While this is our specific struggle today, I believe it is just a small part of the much bigger problem which is the lack of awareness of ALS.  You see, I don't believe that Capt McCombs is a cold heartless bastard, I think that he has no clue what ALS is, what it does to a body and how devastating it is to a family.  For only a truly evil man could have a full understanding of this disease and fail to find compassion for one of his men.  To my friends out there in the ALS community who are working tirelessly and endlessly to bring awareness to the disease and the situations that face PALS everyday, I say thank you from the bottom of my heart. Your Walks, skydives, golf outings, soccer tournaments, concerts, dinners and dances, even tattoos are making a difference, we just have a long way to go.  To my friends and family who get tired of emails and facebook messages about ALS awareness and fund raising events, I know, but this is just too important not to exhaust every avenue, please help every time you can with donations big or small and spreading the word.  Just look at the progress made in the AIDS fight in the past 15 years, it's been 70 years since Lou Gehrig died and we've made almost no strides in treatments or cures.  If you can help our family with this current situation great, but everyone can spread awareness of ALS everyday, won't you join in helping all the PALS out there in the fight for their lives?

Walking On Sunshine

OK, to all my northern friends (that is anyone who lives north of  I 10), I'm sure this will sound like a whine, but it's been too freakin' cold!  I live in south Louisiana because I was born with gills for the humidity, web feet for the water and a cast iron belly because I eat all that stuff that crawls around the bayous; I was not blessed with a fur coat for frigid temperatures.  While I realize that many parts of the country have had heavy snow and freezing temperatures for most of the past month, well, that's your problem, move if you don't like it.  Sorry, for that one I promise not to complain in August when we're 95 degrees and 95% humidity!

Because of ALS, which sucks, I now have limited mobility and that limits my opportunities to get out of the house.  Since no one is home with me during the week, I'm pretty much stuck inside in my chair or on the bed for range of motion exercises and the occasional nap time.  I'm not complaining about this, my days are actually pretty good with computer time, bible study, TV and reading.  I must admit though, I really do look forward to getting out of the house a few times a week for breakfast with Brigid, life group and Sunday church services.  With all of the freezing rain,dangerous road conditions(think Cajuns driving on ice) and cold temperatures this week, all of our regular activities were cancelled!  Even with Gina home Friday because her office was closed, getting me down icy stairs in freezing temperatures was a no go. You see, these days getting me out of the house requires first getting my sweatpants on, then the helper putting on my AFOs (Ankle Foot Orthodics) and tying my shoes then helping with my jacket.  Someone then has to open the side door and stand by while I use my cane and the handrail to maneuver down the four stairs and over to the Honda where my feet are lifted into the car and I get a wedgie as I'm helped into the front passenger seat.  It's really not so bad, I list the steps out to give you a glimpse into our "new normal", at least I can still help those who are helping me; but you can probably tell that going out was not very practical with the conditions.

Waking up early this morning to sunlight streaming through the blinds in the bedroom window instantly lifted my spirits. I was showered and ready to leave the house by 8am and Gina and I headed out. It was still cold, but the bright sunshine, cool crisp fresh air and a hot cup of coffee were all I needed.  It was just a few errands, a stop by her office and a quick visit with Brigid but there I was "walking on sunshine, oh oh, and don't it feel good!"