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.....