We had an AMAZING Christmas!!

Hard to believe 24 hours ago I was so down - crying, wondering what next Christmas will bring , thinking how much things have changed, tearing up with mom as I told her about Jim's new symptoms (mostly calf cramps)

Then - Christmas morning - the kids has their Christmas list filled by ALSGA. Jim enjoyed his gifts and even remembered I wanted a waffle iron. We had many cards & packages - some from my sister's mother's group. They got our story from a gripe my sister posted and took off.

We got to see Jim's Grandparents then went to my parents for our annual Christmas brunch. My whole family was there - parents, sisters, BILs and 5 kids. Suddenly the doorbell rings - we go looking expecting to see Mikayla's friend from down the street, instead we find Santa & Mrs. Claus!! The hand a gift for our family and a bag of Chocolates. I open the card - we got a trip to Disney World!!! After some probing - my sister had written a letter to DW - pasting in some sections of a letter I had written. She said she got a call asking some questions but that was it. She knew nothing about it. We leave Feb. 1 -- I think I am more excited then the kids!!! Jim was kidding that I may pack tonight!! I am so glad I only have 1 month to wait - the anticipation my kill me! Guess when we pack up the Christmas stuff we'll have to get the summer clothes back out!

New Symptoms

In the last week I have noticed Jim's hands weakening - they are "shaky" - we were at Golden Corral and as I watched him walk back to the table I thought he was going to drop his plate.

For 2 days he has been complaining about pain in his back (?symptom?)

Today he has cramps in his calf.

On more negative test result...

The results of the spinal tap continue to trickle in - 3 negative test results - tiny strands of hope breaking one by one ....

Funny usually negative tests are a good thing - here we are hoping for something - anything else to show up!!

Unoffically Offical

Well, met with the neurologist today - both neuros (and their teams) have diagnosed Jim has ALS & FTD. Only "hanging point" is the slim chance something shows up in today's spinal tap. (The neuro said straight out he doesn't expect it to.) They took about 15ccs of spinal fluid for various test including 3ccs for research purposes which we ok'd.

Overall, I was very impressed by how well these doctors worked together. Turns out they are working on ALS medication research and the other neuro was in Germany today presenting the medication. They are hoping for a clinical trial - we'll see. Now the neuro he saw today will fly back to Vegas but will continue to meet with us on his trips back to Cleveland (he is currently opening the Alzheimers Clinic there.)

Jim didn't handle the thought of the tap well - made himself sick with anxiety - however once it started he was ok. Even joking that he felt like he was on an episode of House and that if he was going to be a guinea pig he wanted a hamster wheel and a running ball for Christmas.

The Xanax he was given sufficiently wore him out (that and the fact he & my mom were up with sick little Ruthie most of the night!!) Mom said he took very good care of Ruthie all on her own - through multiple bouts of throwing up.

He was also started on Rilutek today and they will re-evaluate his Baclofen in January during his ALS clinic visit.

The believe the pain in his side may be the result of muscle atrophy - though that is not conclusive.

He is soundly sleeping - I on the other hand have been up for over 23 hours and am still strangely awake! All in all I am doing ok - though I only have that little sliver of denial left!

Christmas Spirit

A week ago I had none - was actually dreading Christmas - a Merry season with no merriment here.

Thanksgiving even an ALS angel granted a Christmas wish for us - enabling us to load Santa's sleigh.

Today - I had a brush with the spirit of Santa - got a gift that I wasn't supposed to get until Christmas - but lifted my spirits.

Jim is overall doing ok, but there are still small things that I see day-to-day.

Most recently - he has forgotten some of the Christmas carols - most noticably The Little Drummer Boy - he has asked several times about it. Strange.

But the tree is up - Santa's workshop is full - ideas are forming in Mrs. Claus' kitchen. Things are good.

HAPPY THANKSGIVING!!

Well it was a good busy day - wore the kids out!! Went to Aunt Mary's for dinner #1 and Mom & Dad's for dinner #2. Had fun playing with all the kids - and watching baby Gavin laugh away.

Our Thanksgiving started a few hours early - we were chosen by the ALS Guardian Angels to receive a Christmas wish - it will help to give the girls a very Merry Christmas from Santa!

Facebook | Home

Facebook | Home

November 20

Guess this is a post to see who reads this.... Preview our Christmas picture.

Things haven't changed much. SSDI appeal has been filed. Waiting for lumbr puncture & follow-up appointment on 12/4.

Jim's concept of finances continues to decline. Other then that just another day.

Hi Katie!!

FTD Support

I attended my first FTD meeting this week with my sister Jenny (and baby Brenden) at my side. I learned a lot - reality check and scary - yet comforting all at the same time.

I received a great suprise from my friends at the Brunswick Preschool PTA. Dinner and a movie for my birthday - a date with my husband! This is a terrific group and they have all been a great support.

Jim goes for his PET scan on Monday - just another test. Probably won't get the results until our next visit in December. This will show what part(s) of his brain are affected by the dementia. Hopefully give us some insight.

Halloween

Happy Halloween....

What a big difference from last year - it was a year ago this journey began - I just did not know it.

Last year at this time - Ruthie ran infront of a car, Jim did not react - the rest set the gears a go. This week I watched Jim play with the girls in the leaves and could not believe things were that different.

Today I watched him struggle - he was unable to carve a pumpkin, something so small that bothered even him. He tried for over an hour - having to take multiple breaks do to tired wrist, side pain and just unable to manipulate the knife. He finally asked me to finish the pumpkins.

Nicole was over during trick or treat and noticed some changes as well. Earlier this week he had problems with helping Mikayla with her homework and kept confusing a quarter for a nickel.

Friday, I was "offically" laid-off from Robinson. Not a huge suprise - but not fully expected either. Just another obstacle. I am really believing that there is a plan here - with all those praying for Jim he has to be leading us somewhere.

Our next stop is a PET scan of his brain on November 9.

Still more ?s then answers.

Well, after Jim's last visit there is only one thing certain - he does have FTD and some sort of primary MND (motor neuron disease), still possibly ALS. Right now he is not showing any muscle atrophy - therefore no definate ALS diagnosis.

I also found out that the FTD is also one of the 50 conditions on the social security "compassionate allowance" list. That is why he was approved so speedy and the term ALS syndrome probably didn't make a difference. Prognosis for FTD is 2-17 yrs, average being 8.

SO WHAT'S NEXT? ...
1. We are waiting for approval for a PET scan of his brain (show what areas affected)
2. Barium-swallow exam (due to choking issues)
3. Follow up with both neurologists in early December. (original one will treat the dementia &
behavior "issues" and the new one the MND
4. I am trying to get spinal tap moved up so results will be back for these visits (this is to check if
hereditary)
5. In December he will have another "battery" of tests. His follow-up will include meeting with
not only the neurologists offices but also an entire "team" : Physical, occupational and speech
therapists, nutritionist and a social worker.

I don't have a time scheduled for this yet - they are working on coordinating it so we can make 1 trip. Thank God for that!

How's Jim doing?
Pretty much the same. Still very unaware of most of this, which will get worse instead of better. Besides occasional muscle spasms - he told the doctor he has no symptoms! There are definate gait and motor control changes, though not always obvious. He is having a lot of leg muscle spasms at night. He sleeps right through them (wish I could say the same!)

ALS Walk Update

I am pleased to announce "Team Shaggy" has offically raised over $3100!! There are still a few outstanding donations to be posted! Thank you everyone for your generous support!!

ALS Clinic Appointment

All in all Jim's appointment went well. They still do not see any muscular atrophy so his diagnosis is Motor Neuron Disease (MND). The difference is the part(s) of the neuron that is affected. Jim's is upper neuron - affecting the part that controls the nerves & reflexes. ALS also effects lower neurons - or muscles.

He will have a PET scan scheduled when our insurance approves it. He had 7 tubes of blood drawn for testing today. He will follow-up with both neurologists in December and have his driving re-evaluated around February. He will most likely have a spinal tap in December. There is concern this may be hereditary since his maternal grandma had PSP (another neuron disease) and with his mom passing so young she may not have developed symptoms if she had it. (Early on set is 50, she was 46 and Jim is 36).

He is up to 8 pills a day & 1 powder supplement- his ADD meds (which he was on), a medication to reduce the rigidness in his muscles & help his walking (3xday) and a natural supplement "cocktail" = vitamins C & E, Selenium, Creatinine and Alpha-lipoic acid. These are supposed to help protect the neurons and hopefully slow his progression.

Though he may still progress to ALS, the prognosis for MND may be more favorable. It is not 100% fatal in all cases. However now the future seems more "sketchy." But we'll take it!

FTD Article

FTD = Frontal Temporal Dementia

Here is a great article that my friend Katie (My "sister" in ALS care) gave me. Her husband, Glen also suffers from ALS & FTD. His story and Jim's are very similar.

If you have a minute read it - it really explains Jim.

http://www.alsa.org/files/cms/Resources/FYI%20-%20Cognitive%20Impairment%20for%20Professionals.pdf

Also, here is our ALSA website:

http://web.alsa.org/goto/teamshaggy-shelley

Victory- yet the battle continues....

Jim received his approval for disabilty today. Should start end of November. We are going to appeal the onset date though - they "picked" April 2, 2009 for the onset day. Not sure where they got that day from - so the next battle starts.

Tomorrow is our first ALS Clinic appointment. Hoping for more answers and direction.

Jim has had an onset of new symptoms this week - he is having problems getting Ruthie strapped into her carseat and getting the latch undone. This is the 2nd instance of upper extremity involvement. Not sure what that means.

Jim's Journey

Here is a look back at our journey so far....

How did this start? - October 2008
Last October Jim allowed Ruthie to run into the street in front of an approaching car. He did not react - luckily our neighbor, Anita, did react and came to me. Jim made an appointment with our family Dr. and received antidepressants.

December 2008
Mom noticed changes in Jim's coordination and motivation. We pretty much blew it off to the "depression" and an accident he had while putting up Christmas lights.

Feb. 2009 -
Aunt Sue made a comment at Mikayla's birthday party that Jim had lost weight. He had lost 15 pounds between the end of October and early February. Who looses weight over the holidays? Jim continued to complain of being more tired and pain in his side. His medications were changed from antidepressents to ADD meds.

June 2009-
Jim again sees our family doctor still complaining of fatigue and now memory loss. Over the next four weeks the change in his voice and "mumbling" of his words become more evident. Concern grows over his loss of memory. Is it more than just disintrest or laziness? He gets and appointment for a head and abdomen CT. Both are negative. He is also referred to a neurologist for evaluation of memory loss.

July 2, 2009
1st Neurology visit. Immediately the doctor says there is something serious wrong. He can hear it in the way he talks. He does poorly on his evaluation. We are left with a diagnosis of dementia and "whatever this is is serious and rare." Jim is given a list of upcoming testing.

August 14, 2009
2nd Neurologist visit. After almost 6 weeks of testing Jim still has the neurologist & the neurology team unsure. He has symptoms of ALS, however, no muscle atrophy. He is given the diagnosis of "ALS Syndrome" or "Motor neuron disease with Frontal-temporal dementia."
It is decided there is little that can be done and we leave with a follow-up appointment for December 4.

August 23, 2009
After some internet searching I find the ALSA website. I create "Team Shaggy" and register the Metz Family for the walk. Mom agrees to walk with us. Our team of 5 hopes to raise $500.

Early September 2009
After making contact with the ALSA office - there are more questions about Jim's treatment and testing. Through referral of the ALSA Jim gets an appointment for the ALS Clinic on October 8.

September 19, 2009
I have noticed many changes in Jim over the summer. He is more distant. He is VERY unaware of his own diagnosis and prognosis. He has tremors, spasms and choking spells that come more frequent. He has spasms in his legs at night. He feels none of this - but they are strong enough to wake me. He experiences a spasm in his wrist and is getting cramp-like sensations in his calfs. Today - I notice the change in his walk and his gait.

September 20, 2009
The Cleveland ALS walk. Our team of 5 has grown to 21. We have exceeded what I thought was a "big" goal to begin with. The change in Jim's walk and gait is apparent. He is stiff like an old man in need of a walker. Slower than he should be at 36. His arms are stiff as he holds them at his sides.

September 25, 2009
Jim shows the first emotion he has ever shown toward his illness. While talking to a former co-worker he tears up. Breaks my heart. There is some comfort in his not grasping the future.

The journey continues....