O-H...

I-O!!!

Go bucks!!!

 Nothing like getting ready for the big game only to find out the cable is out! I swear, if it wasn't'for bad luck,

mom and dad wouldn't have any luck at all!

...well, they do have some luck
-Zusman Hospice
-Medicaid caregivers

-Urban Meyers taking over OSU and 2-0 record

-A great network of family and friends

        

September 8-Kindness from Kentucky

Watching someone struggle with ALS is heartbreaking.  Everyday is a battle, as anyone who has a sick loved one or had a sick loved one can attest to.  It tests your strength to stay emotionally strong, it tests your limits physically, it challenges your life and the way you live.  Most importantly, through sharing stories to others, you can find support and strength to fight the battle in unexpected ways.  

The other day, I talked to a man who will be printing the tshirts for the ALS walk.  He shared how he lost his father in law to ALS.  His father in law searched for a diagnosis for years and finally was diagnosed on a Tuesday with only 6 months to live.  Sadly, he gained his freedom from ALS just 3 days later.  ALS sucks!

My sister received this FB message from a coworker who just moved to KY last week.  Michael's intent was to offer words of encouragement to Erica, but as she shared this letter with me, I was touched and moved by his words...so much so, that I just had to include it this blog.  Sorry Michael, I hope I didn't ruin your hardass rep!!! Lol. Thanks for allowing me to share your message and thanks for donating to ALS.

Hey friend,

Just settling in here in Louisville and got a chance to flip through FB. A simple "like" to your recent posts about your Dad would be woefully inadequate. I would hate to ruin my rep as "the hardass who fires people", but the courage you, and your family, is showing brought me to tears (yes, I have a heart, but don't tell anyone). I am fiercely loyal to my family and shared a bond with my "Pop" that appears to be similar to the one you have with your Dad. I know how rewarding that can be and, I'm betting, that you would be the first to say how lucky you are.

I've always held you in high esteem, professionally, but I feel blessed to get to see a different side of you. I know what it feels like to see your father as a hero, and also to watch that hero struggle with a significant medical condition. Our language lacks sufficient adjectives to accurately describe just how much it sucks. I've always hated the word "fair". Simply doesn't exist. Even for the most positive, hopeful and upbeat people, anger and sadness can begin to creep into the picture. I pray that your family continues to use humor, love and even the ocassional cry, to navigate the path ahead. 

How great it is that your family is facing this disease with humor and love. I'm guessing these are two things with which you were raised and two things that will continue to play a significant role in who you are.

We are simultaneously blessed, and cursed, by having such unwaivering loyalty to family. Many of our peers will never know the love that this kind of bond with a parent creates. 

The price we pay for such fortune is the pain of helplessness we feel as we try to help them. I suppose it's quite similar to the love and devotion our parents felt for us as children. It really does come full circle.

I would be honored to donate to the cause in your Dad's name. Take care.......and don't forget, that means taking care of yourself, too.

All the best,

Michael

Please remember if you plan to walk with us on September 30th, register under our team name freckle fairies. Each person who registers, will be given a personal page to help raise funds for our team in honor in dad.  

We are also creating team t-shirts to be handed out the day of the walk. Shirts will be around $12.00.

Once you register, we will contact you about ordering a shirt.  T-shirt order deadline is September 15th. 

Visit the ALS site today:

http://webcsoh.alsa.org/site/TR/Walks/CentralandSouthernOhio?fr_id=8156&pg=entry

September 4-Celebrating 2 months!

Today marks the 2 month anniversary of dad's fall.  He has made tremendous progress, despite the odds against him.  Being at home and surrounded by amazing caregivers and family has made a difference.  In celebration of dad's recovery, my sis has created a team called Freckle Fairies through the ALS Central and Southern Ohio website .  The ALS association is holding its annual walk at the end of the month to help raise money to find a cure for this disease.   

Please join our family and dad by joining Walk to Defeat ALS. Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone gains their freedom from this disease. 

Lou Gehrig's Disease or amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Please help defeat ALS by donating to this organization and help us reach our goal of $1,000. 

Check out my personal page for Walk to Defeat ALS:
http://web.alsa.org/site/TR/Walks/CentralandSouthernOhio?px=3541696&pg=personal&fr_id=8156

If you can walk with us, please send me a message or a comment.  We would love to have a large team of family and friends support dad as he fights this difficult disease.


Columbus Walk - 9/30/2012

Walk Check-in: 10:00 AM

Walk Starts: 11:00 AM

Location: Fred Beekman Park-OSU



                                           Dad-2 month recovery mark!

Day August 25-Birthday Wishes and Miracles

                                        


Happy Birthday Sis! Loving the new hairstyle, but this could be the sign of a midlife crisis. 

I am so glad to have such an amazing sister in my life. I have learned to identify any miracle that life throws our way.  Miracles are like a cup of coffee, the perfect "pick me up" when we feel like there is no hope. Miracles are amazing.  One of the best miracles is having my sister through this difficult journey to talk to, make decisions, and laugh with.

      


Other miracles of the week....

Dad gets to take a break from his neck collar for a few hours a day and while eating.  What a relief!!


Mom and Dad got approved for Medicaid.  This means mom will get home health care 37 hours a week (7 days a week) in addition to 10 hours of hospice care.  The program through Medicaid is called Passport and it all starts tomorrow.  It looks like dad will have an aid to help start his day, an aid from noon-4:00, and an aid return to get dad to bed.  I am so thankful for Medicaid to help out and not let us down.  It only took 7 weeks of endless documents faxed to the office, but hey, it worked!!

August 24th-Commander Justin-Night Ops

                                      

Last night, dad took a sleeping pill and within a few hours of "sleep", the army showed up to take his neck brace.  If you know dad, he's the type of guy who would give you his right arm if you asked.

Well, the army wasn't going to get away with it that easily. He warded them off by fighting them for several hours. Sometime in the middle of the night, he called for mom to tell her the army was there and not to worry because he was going to keep them safe.  Groggy and confused, mom returned to bed and dad continued his noble duty. The army even came after dad's sippy cup!

When mom woke again, she witnessed just how hard dad had to fight! Somehow, he had managed to knock everything off the bedside table, flaying his arms, just to protect himself.  

I hope the army learned a lesson and doesn't return anytime soon demanding more from dad because...Commander Justin-Night Ops Special Duty Division will be reporting for duty.

 

   

August 20th-Sticker Chart

Boy, if only dad had a sticker chart, he would have definitely earned some stickers for having the best day EVER! He slept through the entire night-a first since July 4. He woke up with an appetite, ready to eat small meals throughout the day. His stomach pain was minimal (unless he was lying), and he drank lots of fluids. Oh the joy to see my dad looking healthy is priceless!

Dad also went to his Dr appt for his neck xray. It was our first time traveling w dad in the van-he did well earning another sticker for the chart. It was also our first time using the hoyer lift without an aide to help. Quite an adventure. Dad got to play peek-a-boo in the hoyer mesh pad...operating the machine sure takes skill. I'm giving myself a sticker for not dropping him.

Since it was only an xray, we couldn't see how the healing is coming along, however we were assured dad has not gotten worse-sigh of relief. In 6 weeks, he gets a cat scan to check bone growth. His first scan is attached from 7-4-12. Notice the three breaks making his injury an unstable neck fracture.

And in true sister style, no Dr appt is complete unless we made it fun! After the Dr left the room, we stole the skeleton off its hanger for a photo shoot. Dad nicknamed him Chip-N- Bones- he could have been a male stripper in his former life, just like dad thinks he was too...I didn't want to burst dads bubble, but with his physique, he had better odds at being a WWF wrestler.

We had dad crying from laughing so hard. It was one of those moments you really had to be there to truly get, but we've got pictures of it. Erica and I earned a sticker for creating a good time, but lost it for stealing and being too loud. Thank goodness no one walked in on and busted us. I was ready to blame it all on dad.

Thank you Todd & Erica for taking time out of your busy day to help... a sticker for each of you! I love you guys.



Gearing up for car ride to the Dr. -1st time on our own transporting dad




Smile Chip-N-Bones!



Cracking up!

Hold that pose!

Chip-N-Bones Photo Shoot Session

  

C1 Neck Fracture-3 breaks about 5-6 mm each (7-4-12)



August 19th-Wanted: Happiness

It's been one of the worst weekends. I am usually positive about dad's recovery, but he is quite ill and doing the best he can-a phrase that puts it all into perspective, thanks to Helene, -a dear family friend who helped me sum up his latest condition. This damn ALS is making the finer things in life we take for granted like eating, swallowing, and talking a struggle. He has lost weight and the stomach pain is relentless. 

To make the situation worse, he was placed in a long term nursing home unit at Heritage for 2 days. No one knew how to care for dad and all of his needs. I am sure its a great facility, it's just not for dad who needs a low nurse/aid ratio. Very upsetting.

So on a positive note, we are desperately seeking happiness. Any amount will do.

Happiness this weekend was...

1. A surprise visit from George while at Herirage -an aid who helped dad when he was in the rehab unit for 6 weeks. They have such a great bond that he calls mom and dad "uncle justin and aunt marcia" as he is their newly added nephew! My dad lit up the room when George strolled in. I can't thank him enough for the happiness he brings with him.

2. Eating spaghetti o's

3. Hanging out w dad and watching The Three Stooges movie and laughing until he cries.

4. Getting his teeth brushed

5. Enjoying a Wendys Frosty :)

6. Sleeping through the night-first full nights sleep since July 4th

7. Jello

8. Yogurt

9. Spending time with his daughters...lol

10. Being home again!