As an avid sports fan for most of my life, I really appreciate the beauty of a team that comes together and achieves success as a unit. As a better than average fantasy sports manager, I enjoy the challenge of picking the right mix of players to achieve total domination of my opponents. As a PALS, I am coming to appreciate more and more the phenomenal team of people who work so hard to help me live my life to the fullest.
Every great team has a solid foundation they can depend on to perform at crunch time, and my family is my foundation. Between Gina and the kids, my Mom, my brother and sisters and all the nieces, nephews and cousins, I feel a lot of love and get plenty attention. My friends - from childhood to high school and college buddies to work colleagues to our church friends - have provided so much assistance, your visits and phone calls, your support of the fund raisers, the groceries and yard work and the railing, but most of all your laughs and smiles. I also have a special group of friends, the PALS and CALS I've met in person and on line, who share encouragement and frustrations and information and understanding that only comes from having been there and done that. Thanks for walking this path with me (and pushing my chair when I couldn't take another step).
If my team has an MVP, it might just be my ALSA rep, Dora. She has helped us secure home health care, SSDI, all the equipment to make life easier and she leads the monthly support group meetings we enjoy so much. I know she does a great job for all her patients, but I'm sure I'm her favorite! My ALS Clinic team at Lourdes in Lafayette is excellent, no need to head to Houston or Atlanta. On these quarterly appointments I see my neurologist, Dr DeAlvare, the pulmonologist, the dietitian, all the therapists - speech, respiratory, physical and occupational - the psychologist and social worker. My daily routine wouldn't be possible without my team of home health aids who spend their days watching ESPN with me, doing some chores and putting up with me. Finding the really good ones takes some time, but I only want the best on my team so we'll keep trying until we get the right ones.
Last week I added two new players to the team; welcome Brenda and Stacy! Brenda is my in home physical therapist and she is working to help improve balance and strengthen legs and hip muscles through exercises. Stacy is my in home occupational therapist working with me on range of motion exercises and fine motor skills. Stacy's got the cool toys like therapy putty, sponge balls and easy grip utensils. This is one time my competitive spirit and goal setting nature are proving beneficial. With the help of these new team members, I hope to remain limber and strong for as long as possible while battling the beast and praying for the break through to a cure.
And to all of you who have signed up as followers or are regular readers of this blog, thanks for the kind comments and words of encouragement and welcome to the team!
Wednesday, July 20, 2011
Wednesday, July 6, 2011
I'm a big boy now!
One of my secret weapons to facing the daily difficulties of living with ALS is the beautiful woman who has been by my side every step of the way since my diagnosis. Gina supports, encourages, pushes, helps, provides and is a phenomenal caretaker, but more importantly remains my beautiful bride. Last week her Mom was facing major surgery down in New Orleans and she needed to be there for a few days...uh oh, what, three days without Gina?
OK, I can do this - it's not that big a deal, right? Well, days aren't a problem because my home health aids are here, but after 6pm...Ryan was working offshore but would be back in before Gina left, so Dad duty for him. Tuesday after work Gina headed out leaving us to man up and handle things. Ryan is a big help around the house but has not faced clean the caboose or shower time before. Now maybe it's just me, or maybe it's a man thing, but I have not been ready to allow any of my children to do these tasks for me, and guess what, I'm still not. Home health sends out a new worker and within an hour they have access to the rear exit, but my kids no way, no how. I realize that one day I may have to give in on this, but I hope for a long time I can be the one who cleaned and bathed them without them returning the favor.
Our biggest concern was really whether or not I would be able to wake Ryan to help get me out of bed for a middle of the night potty run; he solved that by staying awake until I called for him around 2:30am. Luckily for us no clean up needed! We made it through day two as well a the wake up took a lot longer this time. Thanks to Ryan for the help! Meme's surgery was a success, she provided some great entertainment while on the heavy duty pain meds, and Gina headed home Thursday evening. So I'm a big boy now and know that I can make it without her, at least for a few days. This is a big deal because caregivers have a fantastically difficult job, and need a chance to get away for a break every once in a while. I know I can handle it and she can make plans for a girl's weekend coming up soon because I'm a big boy now.
OK, I can do this - it's not that big a deal, right? Well, days aren't a problem because my home health aids are here, but after 6pm...Ryan was working offshore but would be back in before Gina left, so Dad duty for him. Tuesday after work Gina headed out leaving us to man up and handle things. Ryan is a big help around the house but has not faced clean the caboose or shower time before. Now maybe it's just me, or maybe it's a man thing, but I have not been ready to allow any of my children to do these tasks for me, and guess what, I'm still not. Home health sends out a new worker and within an hour they have access to the rear exit, but my kids no way, no how. I realize that one day I may have to give in on this, but I hope for a long time I can be the one who cleaned and bathed them without them returning the favor.
Our biggest concern was really whether or not I would be able to wake Ryan to help get me out of bed for a middle of the night potty run; he solved that by staying awake until I called for him around 2:30am. Luckily for us no clean up needed! We made it through day two as well a the wake up took a lot longer this time. Thanks to Ryan for the help! Meme's surgery was a success, she provided some great entertainment while on the heavy duty pain meds, and Gina headed home Thursday evening. So I'm a big boy now and know that I can make it without her, at least for a few days. This is a big deal because caregivers have a fantastically difficult job, and need a chance to get away for a break every once in a while. I know I can handle it and she can make plans for a girl's weekend coming up soon because I'm a big boy now.
Tuesday, June 21, 2011
9 months
This is a difficult video to watch, even for me, but if you haven't seen it yet take the time to watch.
Wow! Heart breaking, sobering, inspiring, phenomenal > whatever your take on Tim's video, many of the PALS I interact with are in a similar condition and the rest of us recognize we may be there someday. So after my recent clinic visit and now nine months since diagnosis, figured it was a good time to update what my days are like.
*** It took me 3 hours 15 minutes to type this blog entry.
Often Awesome: Episode 32
Wow! Heart breaking, sobering, inspiring, phenomenal > whatever your take on Tim's video, many of the PALS I interact with are in a similar condition and the rest of us recognize we may be there someday. So after my recent clinic visit and now nine months since diagnosis, figured it was a good time to update what my days are like.
- 7am - Wake up, shower, dress > I can roll to my sides but Gina has to help me sit up and get to the shower. I can stand with the hand grips and wash my hair, some days I can the soap. I shave using an electric razor and brush with electric toothbrush. G dresses me for the day, shorts and T shirts for summer.
- 8am - Breakfast, helpers > Usually before she leaves for work I get morning meds ( mostly supplements), a cup of coffee through a straw and cereal for breakfast. Good news is I can still eat and drink all foods and I still feed myself. The home health ladies arrive during my quiet reading and prayer time.
- 9am -noon- TV, computer > Morning First Take on ESPN2, Quick Pitch on MLB Network maybe some jazz or gospel music depending on the mood. Facebook, updating fantasy team lineups, reading other blogs and alsforums.com keep me busy most mornings. Restroom trips require assistance from the ladies; they get to unwrap the package and handle clean up on aisle five! Not sure I'll ever get used to private parts being public parts but I don't really have that choice so I try to make the best of it.
- noon -5pm.- lunch, Jeopardy! > All those years in fast food means I still eat a late lunch, then it's reading or maybe a movie. We get in the range of motion exercises to keep me limber and most days a power nap. Then the hilight of the afternoon, Jeopardy at 4:30, I'll take Morons for a thouusand Alex.
*** It took me 3 hours 15 minutes to type this blog entry.
Thursday, June 16, 2011
Wedding Weekend
Well, what a weekend it was as we welcomed Sarah and Caleb to the Connell family. The trip to Houston has been a breeze the past few times and it was clear sailing again. First on the agenda was Nolan's adoption of Sarah's 16 month old son Caleb. When we got to the court house, we found out that the hearing was upstairs and the elevator was broken. Uh oh! While I was prepared to wait it out down in the lobby, the judge was persuaded to move downstairs into a different courtroom. With the families crowded in and a couple of surprises along the way, the judge finally got to say "You are now officially Caleb Issac Connell" to which he responded with a long loud raspberry, priceless!
The hi light of Friday's rehearsal dinner was me playing chase in my power chair with Caleb, we went around the room about 100 times laughing and having fun. Up early on Saturday to be at the country club for 8:30am, the guys enjoyed a peaceful morning on the back patio before heading in to get into the tux. The wedding was held outside overlooking the rose garden, a little warm but doable, brides maids in red and guys black tuxedos with red tie and vest. Nolan wore his Marine dress uniform and Sarah was simply stunning in her gown.
Long time family friend Clint Summers did a fantastic job with the service and proud poppa teared up more than once. With family and friends gathered, these two childhood friends declared their vows and became one new family. The reception followed with yummy food, dancing, cake and tons of fun. I learned that the power chair doesn't do a very good Cupid Shuffle, but with a little help I was able to dance with my honey, at least until my pants started to droop and almost tripped me. I sure hope that somehow I'll have many more chances to dance with the one I love! The happy couple changed and headed off for their honeymoon cruise and we wrapped up the party in style.
A very special thank you to our dear friends and now family, Sarah's parents David and Anna Valle, for planning and executing a fantastic weekend for all of us. We've known for a long time that God brought us together by divine appointment and you have been the biggest blessing in our lives, look forward to seeing our kids live happily ever after!
Long time family friend Clint Summers did a fantastic job with the service and proud poppa teared up more than once. With family and friends gathered, these two childhood friends declared their vows and became one new family. The reception followed with yummy food, dancing, cake and tons of fun. I learned that the power chair doesn't do a very good Cupid Shuffle, but with a little help I was able to dance with my honey, at least until my pants started to droop and almost tripped me. I sure hope that somehow I'll have many more chances to dance with the one I love! The happy couple changed and headed off for their honeymoon cruise and we wrapped up the party in style.
Sunday, May 29, 2011
Missing My Kitchen
So last night we had one of the angels from our church group cooking and bringing dinner over for us, slow roasted pork roast, home made bar b que sauce, cole slaw and rolls. Thursday night Robert and I spent almost an hour discussing our individual preferences for marinades, dry rubs, cooking times & temperatures and several different bar b que sauce recipes. Since then I realize that of everything ALS has taken its toll on so far, my kitchen time might be what I miss most, even more than going to the restroom alone.
Growing up in New Orleans where food is at the center of everything, where chefs are local royalty and with a Dad who was a very good cook, I guess it was inevitable I'd learn my way around the kitchen. What I was surprised by was that I LOVE to cook; it is where my creativity comes out. Unfortunately now that my hands and arms are losing strength and fine motor control, I just can't handle the pots and pans and since Gina insists I keep all ten fingers, I'm not allowed to use my chef knives.
While I figure my way around my new physical limitations, I have undertaken a challenge of monumental proportions...I have taken Ryan into the kitchen and actually produced edible dishes. You see while all the other children have passable culinary abilities, Ryan would need a recipe to boil water. Under a watchful eye, very specific directions and just a wee bit of good natured commentary, I have at least been an active participant in getting him through some basic items; we even managed southwestern corn and black bean salad for Life Group.
I also have been slack in completing the Dad's recipe book I promised Brigid many moons ago and I've had more requests, so I may have to live vicariously through my recipe writing. I'm not giving up finding the right tools that will get me cooking again, as they say "where there's a will, there's a way". Until then, guess I'll have to get my fix with Giada, Rachel, Bobby Flay and the Top Chefs
Growing up in New Orleans where food is at the center of everything, where chefs are local royalty and with a Dad who was a very good cook, I guess it was inevitable I'd learn my way around the kitchen. What I was surprised by was that I LOVE to cook; it is where my creativity comes out. Unfortunately now that my hands and arms are losing strength and fine motor control, I just can't handle the pots and pans and since Gina insists I keep all ten fingers, I'm not allowed to use my chef knives.
While I figure my way around my new physical limitations, I have undertaken a challenge of monumental proportions...I have taken Ryan into the kitchen and actually produced edible dishes. You see while all the other children have passable culinary abilities, Ryan would need a recipe to boil water. Under a watchful eye, very specific directions and just a wee bit of good natured commentary, I have at least been an active participant in getting him through some basic items; we even managed southwestern corn and black bean salad for Life Group.
I also have been slack in completing the Dad's recipe book I promised Brigid many moons ago and I've had more requests, so I may have to live vicariously through my recipe writing. I'm not giving up finding the right tools that will get me cooking again, as they say "where there's a will, there's a way". Until then, guess I'll have to get my fix with Giada, Rachel, Bobby Flay and the Top Chefs
Tuesday, May 17, 2011
Weekend Report #3
And now, the MAIN EVENT! All of the fun so far was merely an appetiser for Saturday and Sunday at the New Orleans Jazz and Heritage Festival, which IMHO is a better reason to visit the Big Easy than Mardi Gras. This year marked the 42nd year of the fest and the third year in a row for me; while it was an annual excursion during my college days, most of my years from 82 -2006 were spent away from Louisiana. If you like great live music or great food or spending the day hanging out with friends, put this on your must do list.
The weather was perfect > sunny breezy and mid 80's with no rain in the forecast, so armed with plenty of sunscreen and the loaner power chair supplied by the ALS Association, we headed for the Fairgrounds. For the PALS and CALS who read this, I have to share how handicap friendly this event is. First, the only on site parking allowed is strictly for the handicapped, it's not cheap but was still less than it would have cost the four of us to ride the shuttle and we were yards away from the entrance. Upon entering you could pick up a key for the wheelchair accessible port o potties which were plentiful around the grounds and clean because they were kept locked. Special access sections were barricaded off in front of each stage for the handicapped providing VIP level views of the artists while the tented venues also had dedicated entrances and a widened aisle for wheelchair operation. All of the food and drink booths had wheelchair height counters and the asphalt paths winding through the infield made it easy to get around. Being relatively new to using the power chair, I must say the set up made the event that much more enjoyable!
So here's the run down of the musical acts we caught at the fest: Saturday
Sunday's lineup:
The best way to experience food at the fest is to get a little portion of a lot of different dishes and share them around. So here's the festival foods list
The weather was perfect > sunny breezy and mid 80's with no rain in the forecast, so armed with plenty of sunscreen and the loaner power chair supplied by the ALS Association, we headed for the Fairgrounds. For the PALS and CALS who read this, I have to share how handicap friendly this event is. First, the only on site parking allowed is strictly for the handicapped, it's not cheap but was still less than it would have cost the four of us to ride the shuttle and we were yards away from the entrance. Upon entering you could pick up a key for the wheelchair accessible port o potties which were plentiful around the grounds and clean because they were kept locked. Special access sections were barricaded off in front of each stage for the handicapped providing VIP level views of the artists while the tented venues also had dedicated entrances and a widened aisle for wheelchair operation. All of the food and drink booths had wheelchair height counters and the asphalt paths winding through the infield made it easy to get around. Being relatively new to using the power chair, I must say the set up made the event that much more enjoyable!
So here's the run down of the musical acts we caught at the fest: Saturday
- Shamarr Allen & the Underdawgs
- Geno Delafose & French Rockin Boogie
- James Andrews & the Crescent City Allstars
- Trombone Shorty & Orleans Avenue
- DJ Soul Sister
- Jimmy Buffet
- Fourplay
- and Aaron Neville singing in the Gospel Tent
- Grandpa Smalls & Playing for Change
- Papa Grows Funk
- Michael Franti & Speardhead
- The Radiators
The best way to experience food at the fest is to get a little portion of a lot of different dishes and share them around. So here's the festival foods list
- Crawfish bread
- crawfish sacks
- oyster patties
- softshell crab po boys
- cracklins
- shrimp flauta
- crawfish beignets
- pheasant & andouille gumbo
- crawfish Monica
- fried green tomatoes
- seafood stuffed mushrooms
- key lime tarts
- strawberry shortcake
Saturday, May 14, 2011
Weekend Report #2
When the reality of my ALS diagnosis set in last year, I was encouraged to consider doing some of the things on my "bucket list" while I was able to enjoy myself. Last year our church had done a series on 30 Days To Live, and we had discussed the topic at length with our home group. Tim McGraw's song talks about skydiving, mountain climbing and bull riding, but these held little interest for me; I wanted to spend as much time as possible with my family and friends.
So at the beginning of the year when we began planning for Jazz Fest, I invited my college fraternity brothers and little sisters to stop putting off that reunion we'd been talking about for so long and make the trip to New Orleans this year since I don't know how many more I'll be able to attend. The response from so many far away friends was overwhelming and we gathered on Friday to reconnect, drink a few beers and share some memories. The corner of Broadway and Zimple was special to these Tulane Alumni for two reasons: the Pi Kappa Alpha fraternity house and The Boot. New Orleans is one of the few places where you can find a bar filled with a mixed crowd of college kids and 50 somethings at noon on a Friday and no one thinks it's unusual.
As I was wheeled into the bar where I'm sure I should have been wheeled out many times in my college days, it was all I could do not to tear up as I saw my friends waiting to greet me. Thank you for making the trip and thanks to the spouses who allowed you to be away from home on Mother's Day. Here's the group > Pat and Kim from Pittsburgh, Donna Jo from Orlando, John from New Jersey, Ben from Atlanta, Greg from Houston, Stacey from Savannah and Des from Jax as well as Jon and Maite who live in Nola. The only thing that put a damper on the day was news that our old frat house was soon to be demolished. That brought back memories of room mates, Babe's spoon, and the great theme parties like Heaven n Hell night, the New Jersey Saturate and the Miami Beach Party with the truckload of sand filling the bottom floor. Before heading off to Mandina's for shrimp, oyster and roast beef po boys we trekked across the street for a final visit to the house. As the gang headed out for a night in the Quarter, I headed in to rest up for the next two days at Jazz Fest. Here's the way the story of Pike house ended, thanks to all for making special memories!
So at the beginning of the year when we began planning for Jazz Fest, I invited my college fraternity brothers and little sisters to stop putting off that reunion we'd been talking about for so long and make the trip to New Orleans this year since I don't know how many more I'll be able to attend. The response from so many far away friends was overwhelming and we gathered on Friday to reconnect, drink a few beers and share some memories. The corner of Broadway and Zimple was special to these Tulane Alumni for two reasons: the Pi Kappa Alpha fraternity house and The Boot. New Orleans is one of the few places where you can find a bar filled with a mixed crowd of college kids and 50 somethings at noon on a Friday and no one thinks it's unusual.
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