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!
Saturday, December 26, 2009
Tuesday, December 22, 2009
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.
For 2 days he has been complaining about pain in his back (?symptom?)
Today he has cramps in his calf.
Friday, December 18, 2009
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!!
Funny usually negative tests are a good thing - here we are hoping for something - anything else to show up!!
Monday, December 7, 2009
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!
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!
Thursday, December 3, 2009
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.
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.
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