A Very Shaggy Christmas

HO HO HO - Well another Christmas has come and gone and New Year is just days away. So - How did they day go with Jim? Overall very good.

I worked so eventhough Santa came to our house the girls spent the night at Grandma & Grandpa's house. I got off work and picked Mikayla and Ruthie up on the way home. It took the girls and I a couple of attempts to wake Jim up and get him downstairs. The strangest part was Jim kept getting up and walking away while we were opening gifts. It took us about a half hour just to get him to sit and start opening his gifts. Then mid opening he'd get up and wonder off. Not sure what that was about. I did get a few "real" smiles from him when he opened his talking Achmed (the Dead Terrorist/ Jeff Dunham) doll and his inflatable leg lamp decoration.

Christmas was a joy this year because 2 years ago I was scared Jim wouldn't be here - now I can't imagine him not here. Part of the reason for this blog is to tell you how he really is SO - Gone are the Christmas carols, he no longer sings at all. One of Jim's favorite parts of Christmas is decorating - especially his Hallmark tree. He really struggled to "fluff" the branches and hang the ornaments.

Jim has really slowed down the last couple months. So much so my 4-yr-old niece Kaylee asked me "Aunt Shelley was does Uncle Jim move so slow?" Jeannie says she really notices it too since she is not here day to day. I notice it too especially since he needs help dressing almost daily now. He also is no longer able to cut his own food, or do his own buttons. He got all new jeans this Christmas - mostly since he lost about 15 pounds, but also because he has problem with the buttons. I had to get him jeans with bigger buttons and cut the holes bigger.

I think that about covers it! Hope everyone's Christmas was great and New Years is terrific!

The year in review

December 2011

The other day I looked at my 3 month calendar and noticed it still showed October and November. Apparently, I am running behind! Where has this year gone? Guess I have got to get to it and bring myself to start planning for 2012! The last year has certainly flew by! The Metz Family has been busy, busy, busy!

We have enjoyed a couple nice trips this past year. Over Easter break we visited Jeannie and family in Virginia. Mikayla was our travel planner - she wanted to go see George Washington's Mount Vernon and Arlington National Cemetery.

Over Mother's Day weekend Ruthie again got to spend time with cousins Kaylee & Gavin while Jim, Mikayla and I traveled once again to Washington DC. This time we visited the nation's capital for ALS Advocacy Day. While there we visited the Capital Building and met with five Congressional offices to share our ALS story and advocate for research funds.

In July, my mom joined us for a trip to Idlewild Park in PA. We celebrated Jim's 38th Birthday with his Aunt Jean, Uncle Dave, cousins Scott, Megan, Darcy and Matt. Mikayla and Ruthie had lots of fun riding the rides with Jamie and Maddie. Though it was horribly hot - we all had a great time and really enjoyed ourselves.

Mikayla is in 2nd grade this year. Despite her recent diagnosis with ADD she is really excelling in school. Her teacher has been awesome in helping us and supporting her! She loves reading, history and science. However, her favorite subject is still recess! Mikayla's social calendar is the busiest of us all! She is active in Girl Scouts (cookie sales start soon), science club and has just finished her first year of cheerleading. She is greatly anticipating her First Communion coming up on Mother's Day weekend.

Ruthie is busy in her 2nd year of preschool. She is always a ball-full-of energy. Her favorite activity is whatever Mikayla is doing! She is anxiously awaiting Kindergarten in the fall so she can ride the bus with Mikayla.

Jim has been doing pretty good. We are currently working with what I call a collection of "ologists" to manage his health. He will be starting with a new neurologist from John Hopkins in the months to come. Ironically enough, his name is Dr. Appleby - so after years of no mention of Applebee's in our Christmas letter - here it is again. Dr. Appleby specializes in early-onset dementias.

On a sad note, we lost Jim’s grandfather on August 25. Grandpa suffered a stroke last January which started a long battle of declining health. Grandpa was in and out of the hospital and nursing home all year and never returned home. Though we miss him greatly we are happy he is at peace. The girls still toast him at their tea parties and as Ruthie puts it, “even though he is in heaven he still loves us” (and we still love him.)

My mom has been awesome in helping care for everyone. Despite working five days a week Ruthie and Mikayla spend every Saturday sleeping over Grandma's house. Then Grandma gets to have a sleep over at our house on Sunday nights. Grandma then helps get the girls up and drives Ruthie to the school bus.

As for me, I am still working weekends at Hillcrest Hospital. I spend the weekdays at home with Jim and running to and from doctor's appointments. I am currently studying for my ob/gyn ultrasound registry. I passed part of my vascular ultrasound registry this fall and will have one final exam coming up for that in the all-to-near future!

As always - we thank you for your thoughts and prayers. I know in my heart they are what are helping Jim beat the odds! We hope that you and yours are healthy and happy and continue to be so in the upcoming year!

Merry Christmas and God Bless,
Shelley, Jim, Mikayla and Ruthie (Sushi and Saki too!!)

General update - Walk to Defeat ALS

Sunday we attended the Walk to Defeat ALS. This year 23 people walked as Team Shaggy to support Jim's battle with ALS. There were over 1,000 walkers in all. We had a beautiful day at Progressive Field. It was a lot of fun. We had two families from the PTA join us. Colleen, her huband Adam and son Tyler also walked in honor of Colleen's grandfather who lost his battle from ALS when Colleen was young.

A new found friend, Sherry, her husband Chris and son Christopher also joined us - I just met Sherry 3 days before the walk at the PTA meeting.

Our friends Jim and Tina ran into an old friend/neighbor while at the walk - she is now fighting her own battle with ALS. Small world.

Our other team members included my mom, my sister Jenny, brother-in-law Chad, and their boys Charlie and Brenden, Chad's friend Dave and his son, my long-time friend Cathy and her daughter Dana (who was also flower girl in our wedding once-upon-a time) and longtime friends of my mom, Cathy and Pete.

Up until last night I would tell you Jim was doing pretty good -

Last night Jim couldn't figure out how to get into bed. I was watching him just stand next to the bed staring at it. He had his hand on his pillow and just had a blank look on his face. I asked 3 times what was wrong. He insisted nothing. Finally he admitted he couldn't get into bed. He couldn't get his legs to move right. I could see the "gears turning" to try to do it. I really don't think the problem was with his legs - I think it was a "trigger" problem with his brain. I finally got him turned around and kinda "tipped" him into bed (he wouldn't or couldn't sit either.) He is doing better today - though he slept most of the day. He says his head didn't feel right. I was going to call the doctor but decided against it. I know our primary physician can't help - and really all the neurologists will say is that's they way these diseases work. I am sitting here with him now - and he is pretty much back to normal now. (Or at least as normal as things get now.)

This is just a more obvious issue added to a laundry list of small changes. Jim can no longer cut his own food. I bought him a special knife but he gets aggrivated and gives up. He can not work his fingers enough to do buttons or fine-motor skills like that. I took him suit shopping last month and learned one thing - suits are NOT made handicapped friendly! The salesman finally helped us find a pair he could do the clip on - but never the button. He decided that was fine - even laughed that if I wasn't their "mommy would have to help him."

We lost his Grandfather on August 25 (thus the suit). One of the sweetest people I ever knew. Good news - Jim took it well. Bad news - I am unsure why. He and his grandfather were VERY close. Jim was probably the only person Grandpa recognized consistently the last few months. Though it was a relief that Grandpa's suffering ended - it was also evident of Jim's loss of emotion. He handled the services very well.

ALS Clinic

Well another long day at ALS Clinic is behind us and all in all it went well.

Jim's breathing and strength are pretty much the same as is his range of motion. The only real place he lost was some in his left ankle. Of course, his muscles are stiffer - but we knew that. He was down another 6 1/2 pounds - so has lost about 14 pounds since the beginning of the year. Once again we were told to increase his calories and fat intake. Problem is - you know Jim - he has never really limited these things to begin with. He eats what he wants when he wants. My concern is not so much his eating - it is teaching the girls that yes daddy can eat like this but it is not good for the rest of us!

Jim has been having some minor choking issues lately so the doctor ordered a barium swallow test - no date set yet. The doctor is not overly concerned but being cautious and wants to set a "baseline" with this test.

After a long day Jim and I enjoyed a child-free lunch and got to do all kinds of fun stuff like get an oil change and renew the tags for the van. (Though he no longer has a license the van is still in his name.) Then we had to reclaim the kids (who did not want to leave the sitters!)

Jim got to go home and nap while the girls and I went Bday shopping for daddy. Suprise suprise - they picked out another Christmas ornament! (The Hallmark ornaments always come out around his birthday.) I swear that tree is going to fall over from the weight of ornaments.

Tomorrow we leave for a much anticipated vacation to Idlewild Park (in Ligioner PA). Mom is joining us!! Can't wait. Friday Jim's Aunt Jean, Uncle Dave and cousins Darcy (and family), Scott and Megan are meeting us! SO EXCITED! Just a little nervous about Jim and the heat wave. He is having some trouble with body temperature (mostly he is always colder then the rest of us and has some abnormal sweat issues). But we plan to take it slow with no set itinerary.

HOPE EVERYONE IS HAVING A SAFE AND HAPPY SUMMER!

Ups and Downs

Well the last couple weeks have been kinda exhausting...

Upon arriving home from DC we found some water in our basement (luckily not much)- the rain was coming down so hard that the sump pump was having a hard time keeping up. Luckily, I had already started cleaning/reorganizing the basement in prep for moving the kids room downstairs so not much got wet. UNTIL....

Last Saturday Jim really got a wake up call when his shower went cold - went to check the water heater to find a shower in the basement! A pipe had sprung a leak and it was raining in the basement. Again, luckily there was minimal damage. A few ruined kids clothes. Fortunately a friend of the twins was out within hours and fixed the leak. Problem was the leak had short-circuited the water tank. Good news -the tank was still under warranty, Bad News - it was Memorial Day weekend! (Our house always breaks on the holidays!) Good News - once it dried out all was working again.

Jim has been having kind of a hard time lately. Lots of pain with minimal exertion. Today we went to the rec center and swam while Mikayla attended a party there. I never did get Jim in the pool but he did enjoy the hot tub. Later, we met Mom at church so we could go to mass and she could take the kids home with her. I could tell Jim was hurting. I finally convinced him just to sit in the pew and not to worry about standing or kneeling. About 10 minutes later he was sitting with his head resting on the pew in front of him. I walked him out of church and by the time we got to the door he was in tears from the pain. After some rest mom said he seems to be doing much better. But some extra prayers would always help.

Memorial Day we spent a nice day with Mom, Dad, Jenny, Chad and the kids at Wallace Lake. We had a cookout and the kids swam in the lake. It was a nice relaxing day. However, once we got home Jim got VERY sick - throwing up several times. We are not sure, but we think he may have had a bad reaction to the heat. I know his body is having troubles regulating his temperature - usually he has problems feeling cold. We are wondering if he is also having problems with the heat. We will address the problem next week when we meet the new neurologist (this one specializes in the autonomic neuropathy which causes issues like this.) Until then we will just have to be careful!

As many of you know - yesterday was Mom's Bday!! We celebrated with dinner after she picked up her new car! (present from dad - plus she's getting a new screened-in deck/addition on the house!) However, her birthday brought some not-so-good (yet somewhat expected) news. She went with dad for his follow-up visit to the cardiologist and they were told Dad will have to have open-heart surgery in 6 months.

His heart has gotten worse in the last year then it did in the last 10 years combined. The Dr. says he is amazed Dad is doing as good as he is with how bad his heart is. Most people wouldn't be able to make it to the mailbox and back. However, since he is in such good shape and really not having any noticeable symptoms the doctor feels confident he can wait until after the new year for surgery. Dad will go back in October for more follow-up and testing. In the mean time you can be sure we are watching him like a hawk! Everything considered, the "old-man" looks good for his age (76 next week!) I'm pretty amazed he has gone this long on that old ticker - seeing as how we originally found out he may need surgery in 2004! Again, your prayers are very welcome!

Grandpa Metz is back in the nursing home after 2 stays in the hospital last month (one in ICU.) He recognizes Jim on a regular basis but that is about all. For some reason Jim is the only one he knows every time he sees them. It is truly a sad situation. Grandma is still with Aunt Mary - though she is quickly driving Aunt Mary to the Looney Bin! Sometimes I think Mary needs the most prayers out of all of them!!

Finally, I want to say thank you to all the people who have helped us out especially over the last few months! We have TERRIFIC neighbors and a WONDERFUL community of friends!! I really, really don't know what I would do without everybody!

We are glad summer is finally here - hope it is a safe and happy one for everyone!

Hitting the Hill

As most of you know Jim, Mikayla and I are in Washington DC for ALS Advocacy day. The 3 day conference started Sunday (Mother's Day). It has been a very busy and very educational experience. We have met many other pALS (people with ALS) and cALS (caregivers) with so many different stories.

Today we met with various people at the capital and shared our stories. It is really sad how horrible this disease is. You just look around and see how ALS affects people in so many different ways. So many in wheelchairs. Many not able to use their arms or legs. Some speaking with the "ALS accent" (probably my new favorite term) or unable to speak at all. There are countless caregivers and family members here remembering their pALS who lost the fight with ALS.

While here Jim once again became a guinea pig and gave blood for another research study. It actually took very little to convince him this time - just promise that it wasn't a repeat study! I am proud he lets me talk him into these things. Their is very little we can do in this battle except for give what we can to research. Now let's just hope that our time on Capital Hill proves effective and getting the funds to continue the research $$.

Though the past few days - today especially - have been both physically and emotionally draining I cannot wait to do this again! I hope Mikayla remembers her promise next year and returns with us. I told her next year maybe we can bring Ruthie but Mikayla says no. I think she has enjoyed her 1 on 1 time with mom and dad to much to want to share next year. (And from the pictures I am seeing I think Ruthie is enjoying her time with Aunt Jeannie to much to want to come!!)

One thing I did notice during this trip:
It was suggested we bring a "before" picture. I didn't think I had one that showed any change. Although you can obviously tell a difference in person I really didn't think some one could tell by a picture. So I started to look. First I found a picture of Jim holding Ruthie on his shoulders at the zoo... he can no longer do that, put on his coat and lately I have been cutting his food. However, those were things I realized so not too shocking. Then I came across a picture of Jim and I and my cousin Jaclyn's wedding (8/8/08). This is the same picture I often use for my FB profile. Gone is that smile and that sparkle in his eyes. As I handed this picture to each representative we met with it killed me. This is not a change you could miss. As I am telling his ALS story to these strangers (often through tears) he is just sitting there. No reaction, just completely flat faced.

TAKE CARE ... until next time!

Lots Going on

Been kinda putting this off - wanting to update but really not wanting to face facts either I guess.

This week was one I had been waiting for since January - we saw the pulmonologist. Well, after such a long wait I can say this we still know little. Once again we got to hear that Jim was "not quite what they expected." Which is in many ways good when it comes to this ALS / FTD journey - but still frustrating!!

The wait started at ALS clinic in January when Jim's pulmonary functions had decreased "enough" in 3 months to warrant adding a new "ologist" to his collection. So we waited 4 months to meet this new doctor.

The day of appointments started with pulmonary testing - most of which Jim handled with humor - that is until the needles came out. Basically he had an anxiety attack that despite the best of my ability I could not lessen. (I even tried to play him the "Twilight" movie on my phone. Guess Bella doesn't have the same appeal to him as Edward to me!! I guess I will have to download a movie onto my phone that he likes too.) He was too tense to get an arterial blood draw - so that part of the test was blank and the tests overall were limited.

When we met with the pulmonologist we again heard that Jim's case was odd. The doctor had expected to see more issues with Jim's breathing out - but instead his issues seem to be with breathing in, almost ashtma-like. Again, some is hard to judge because of Jim's overall inability to relax. The next step is to have a test where they will hook him up to a pulse-ox monitor here at home and measure his breathing for a night as he sleeps. Hopefully that will shed some light.

After leaving the pulmonologist office Jim had is 3 month follow-up with the ALS office. In short - he is REALLY tight in his arms and legs. The anxiety attack was only partially to blame for his not relaxing for the blood draw. So once again we will up his medications over the next two weeks in hopes of seeing some relaxation. The downside, more meds = more tiredness. Jim is quickly heading to 30 pills/day (I think somewhere around 25 - I lose count.) Amazing for a guy who 2 years ago barely took even tylenol.

The next appointment he has is in June with another neurologist (yes more for the ologist collection and the 3rd neurologist on his list.) This neurologist specializes in the autonomic portion of things. As a recap - Jim was diagnosed with autonomic neuropathy in March which is causing his blood pressure to drop while standing. I hope this doctor will help to shed light on Jim's episode of asystole during his tilt table test.

What is funny is what Jim got out of this full day of doctor's appointments - basically "they still don't know anything and I can eat whatever I want." They want him on a high fat and salt diet. Fat for his muscles and salt for his blood pressure issues. For those who know Jim - this means very little in change of his current diet - except now I have to push him to eat all the stuff none of the rest of us should have! High fat, high salt, low exercise diet. Hmmm.... careful what you wish for!!

Now for the FTD side of things. When I step back from everyday life I have to admit there are a lot of changes here. Jim has obviously slowed down both mentally and physically the last few months. People talk to him and he just gives them "the look." (For those non-FTDers - the blank stare.) His speech is often slower as are his movements. His memory is worse and his "little" habit of misplacing, moving things and throwing things away has become a huge problem.

Case in point - after waiting forever for more meds to arrive from the mail-order pharmacy I finally called all po'd because Jim was now out of 2 medications and I hadn't received the order. One refill was MIA - never filled. Maddening but easily fixed. The other had been delivered over a week before and signed for by Jim. It too was MIA. After a great search we finally found the missing meds. Yet another reason I HATE mailorder. Even though I was home the day the medication came somehow I missed the UPS driver. Delivering anything thing to a person with dementia is NOT GOOD. I choose to be pissed at the pharmacy - though not directly their fault it is easier! So back to the pharmacy I go. The weekly trip is much easier then a two day search for a missing prescription.

ON A FINAL NOTE (I know, I know enough already!!)

MAY IS ALS AWARENESS MONTH. Jim, Mikayla and I are preparing to head to Washington DC this next week to meet with Congressional members and promote ALS Advocacy/Awareness. We will head to Capital Hill on Tuesday, May 10 to tell our story. I am incrediably nervous and excited all in one. Though Mikayla is nervous she is quickly learning that doing stuff that scares you makes you brave. Plus, she is incrediably excited to go because she want to ride the subway - just like "Wizards of Waverly Place!" Hey, whatever it takes!!

Say a prayer that we all keep are nerves in check during our time on "The Hill"

Until next time.....