How to spend our Travel Referral gift card?

It won't be long before we head to the land of the Mouse again.  Yes, we go a lot.  Disney is one of the few place in John's real zone of comfort.  With severe PTSD, you can't just spontaneously decide to go on a vacation anywhere at anytime.  However, three years ago thanks to the Wounded Warrior Family Support organization, we took our first real family vacation.  They gave us a week at Universal, a day at Sea World, and we spent one day at the Magic Kingdom doing the Very Merry Christmas Party.  

During that that vacation, I saw John and the boys smile more than they had smiled in a long time.  I think the fact that we survived a week of vacationing made him realize that we could go on vacation and we could have fun.  

Since that time, we have been to Disney countless times.  Technically, I suppose the number would be about 9 times to Disney, Universal, or the Downtown Disney area in the last 3 years.  We go during off peak seasons like late September, October, early November, or February to avoid the most crowded park days.

We really like using an authorized agent to make the hassle of booking and planning a vacation a little simpler.  Of course, we still like to do our fair share of research, planning, and booking too.  But, one perk to the agent we used is that when you refer friends and family who book a qualifing vacation, you will get a Disney gift card!  You can use it online at the Disney Store or at Disney locations.   

I found this one today in my purse.  We have had it since December, after some friends who booked a trip traveled to Walt Disney World.    

So the question of the day is how do we spend our gift card? We have $50 in Disney Dollars to spend.  Would you use it for dining, souvenirs, a boat or bike rental, towards booking another vacation? 

(Friends and readers: I am now a Travel Agent complete with graduating from the Disney College of Knowledge and I'd love to help you plan a magical vacation.  Email me at aflener1@gmail.com and Find the agency on Facebook)

VA's Health Buddy for PTSD

For veterans suffering from PTSD, the VA offers a Health Buddy.  This electronic device acts as a modem that is connected to the veteran's computer.  The Health Buddy has a screen that loads questions about the veteran's emotions, behaviors, and symptoms.  Each day, a new set of questions and lessons load for the vet and a green flashing light indicates when there are questions to answer. 

The Health Buddy provides educational opportunities for the vet to learn about PTSD and gives random trivia questions and facts to break up the monotony of constantly having to use the Health Buddy for PTSD type responses. 

Some commonly found behaviors with PTSD (like substance abuse and compulsive behaviors) will also be listed as education opportunities, even if the vet does not respond stating that he has a problem with these behaviors.  For example, today John's Health Buddy listed 7 different "Substance dependence" requirements and stated that one would be considered to have a problem in this area if he or she answered yes to 3 or more of the 7 items. 

If a veteran gives a distressing answer, the Buddy lists ways for the veteran to cope or manage symptoms and will prompt him or her to call their telehealth coordinator.  Each business day, veteran responses are monitored by a staff member in the Telehealth Department at the veteran's VA healthcare facility.  When abnormal responses are entered, the coordinator calls the vet or family member. 

We have found this telehealth nurse to be a valuable asset to continuity of care at the VA facility.  In our case, I believe that she often has the best picture of what daily life is like for my husband.  If there is a crisis, she seems to be able to get the best answers the quickest.  She acts as a liaison between the mental health professionals to make sure that PTSD symptoms are controlled as best as possible. 

Veterans who do not have access to home internet service that will allow for a modem connection can utilize PTSD services through the telehelth department by calling in each day from their phone to answer questions.  We did this for a while before switching to the Health Buddy and found that many of John's responses were tagged as false positives.  After getting daily calls to make sure he was safe and not in distress, we decided to quit using the telephone system. 

The telehealth division has monitoring systems for disorders and diseases other than PTSD.  Some vets are able to get their blood pressure, weight, and blood sugar monitored through similar health buddy systems.  Other systems focus on smoking cessation. 

If you believe the Health Buddy system would help you or a loved one who suffers from PTSD, talk to the primary care physician, case worker, or mental health provider at your local VA Medical Center to get a referral and appointment set up. 

Our Resurection Rolls with "Jesus" Marshmallows

This morning, Aston and I baked our version of Resurrection Rolls.  

He woke up wanting to wear his "handsome clothes" because it was Easter time.  Being the strong-willed child that he is and having 3 days left until "Church day" to do laundry, I agreed.  He dressed and wanted to make cookies.  However, the Easter cookie dough that he thought was still in the fridge wasn't there.  So, he asked for marshmallows.  I thought, "Hey, little buddy, lets make some cookies with strawberry marshmallows!" I pulled up a few things on Pintrest but I didn't want to roll the marshmallows in all that melted butter! We did our own thing.

Preheat oven to 375 degrees.  Then lightly grease or spray a muffin pan.  

You will need:

• 1 can of Pillsbury Cresent rolls - 4 ct
• aprox 4 TBSP of brown sugar
• sprinkle of cinnamon (mix with the sugar above)
• 4 Strawberry Marshmallows (after all pink represents Jesus!)
•  enough water to coat marshmallows
• about 1/2 TBSP butter - quartered

First, dip the marshmallow in water and roll in the brown sugar to coat it.  Place the marshmallow on the crescent and roll it up, make sure to pinch the ends shut so that the sweet Jesus can't get out! 

You can explain to your child that the marshmallow represents Jesus and the crescent roll represents the tomb that Jesus was buried in.   

Next, roll the crescent package in a little of the brown sugar to coat it and place it in the muffin pan.  

 

Finally, we put a very small amount of butter on top.  Then we put them into the oven.

Cook for 11 minutes at 375 degrees.  

While they are cooking, you can explain to your child how after three days in the tomb or grave that Jesus rose from the dead.  Point out that the sweet Jesus rolls are rising as they cook!  

Take out your little mini tombs and peel them or cut them apart.   You will notice that they are empty.  Just as the marshmallow rose and caused an empty crescent, Jesus rose from the grave to ascend to heaven! What a story.  

Then if you look close, you may see some of the pink syrup at the bottom of the roll.  If you want to be really technical, explain that there was evidence left in the tomb that Jesus had been there.  You can explain to older children that the cloths that Jesus was wrapped in had been left in the tomb!

These are really good and sweet without all the extra butter and sugar that some recipes call for.  This is so easy for kids to help make and it provides an excellent teaching of what Easter is all about.  

Aston (age 4) went right to the living room to tell his dad, "Look Jesus exploded and left the grave empty." At least it is a start.  Even for a four year old, he will probably remember this for a while!

"Why couldn't they give me a cool disease?" TBI and associated Parkinson's

It was a long and frustrating day for John.  Tuesday, mom carried him to Augusta while I stayed at home recovering from my hysterectomy.  After waiting about three hours to see the chief of neurology at the VA Medical Center, John had to stop by the pharmacy for a new medication and wait in a very long travel pay line.

Last summer John had an MRI and they almost immediately called him to go back for another.  They even scheduled him on a Saturday so they could get him in soon and do all the views that the doctor wanted.  We didn't hear anything back and called to no avail.  Months later, we got a copy of the radiology report during a routine request for records.  The primary care doctor didn't seem concerned that he had fatty "hotdog shaped tumors" in several places around his spine.  She did put in a referral for neurology and alas, we got a letter saying we had an appointment in about six months! Six months is a long time to wait while you are battling the concept that there are tumors over a centimeter long on your spine. 

Anyway, going back to the title of the post... I sent John and mom an email with items to address with the doctor and the resident and doctor did several standard exams and tests in the office.  They determined they would suggest another MRI with a closer view but thankfully felt that the "sausage shaped" tumors were nothing of concern.  However, the chief doctor wanted to start a new medication for John's mobility issues.

For quite sometime, John has had very frequent falls.  He has trouble moving, trouble getting up, trouble with numbness in his extremities, and difficulty holding onto things like cups, forks, bags, etc.  Often he will sort of freeze and brace himself on a wall until I can get a chair or his walker (with a seat) to help him sit down to prevent a fall.  At other times, he will ease himself to the floor when he can no longer stand.  John has had frequent falls and needs help drying off after a bath and often can't pick up his feet to adequately get dressed.  He gets dizzy and has trouble bending over with success.  John often struggles with his speech.  He stutters, has slowed speech, or has difficulty coming up with words.  He has trouble sleeping, anxiety, depression, and occasionally has mild shaking.

Tuesday when John got to the pharmacy it was plainly spelled out on his bottle to take daily "for Parkinsons."  This was shocking.  Parkinson's  disease seems so severe and relentless.  One likely thinks of the "parkinson's shuffle" or shaking in association with this disease.

We've only told a few people before this post that the doctors were now treating John for Parkinson's.  We've got all sorts of reactions.

"But Amanda, John doesn't have the shakes!" or "I've never seen him shuffle his feet." These have been a couple of the replies.

Parkinson's is not only shakes and shuffling.  It encompasses much more.  Many of the symptoms can commonly include those I listed earlier.  Because John has been diagnosed with the Traumatic Brain Injury (TBI) we've always just lumped any unfortunate symptom or deterioration in his health to the TBI. 

Recently, the VA has acknowledged that they are proposing changes to the way they view TBI and are embracing five (5) new diagnoses secondary to TBI for service connected compensation.  These newly acknowledged diagnoses include: unprovoked seizures, depression, Parkinsons, hormonal imbalances, and dementia. (See an informative article here from the Federal Register) While I'm glad they are finally acknowledging that there is "sufficient evidence of a causal relationship" and "associations" between these things, I'm interested to see how long it takes to get the actual service connection reviewed and rated. We can only hope the process is speedier than the 5-10 years it has taken them to figure these illnesses are linked.

While this is all still very new to us, I wanted to go ahead and blog about it as I've read that up to 15% of diagnosed TBI patients may develop Parkinson's.  This would mean that in the coming years, many more wounded veterans will develop these same symptoms and hopefully will be able to get quicker diagnosis and care than what we have experienced. 

While this is an unfortunate disease to have, and as John jokingly questioned "Why couldn't they give me a cool disease," if accurate diagnosis and medication helps these horrible symptoms, we eagerly await more pleasant results.