After much discussion with the other dads in the group I packed Jim and Mikayla up for a weekend daddy/daughter camping trip. One of the other fathers came and picked them up and agreed to drop them back off. They helped Jim set up his tent and kept an eye on both him and Mikayla.
The biggest "problem" - Mikayla swam out further then Jim could in the lake (with a life vest) - so another dad stepped in so Jim didn't have to try to go that far. They ended up home a day early due to rain.
All in all - everything must have gone very well - the other fathers invited Jim and Mikayla on the next sleepover - on a battleship!! (In Novemeber.)
Ruthie and I had a Mommy-N-Me day that Saturday. I took her to the Kiddie Park. It took her quite awhile to understand that it was a day all about her. She kept asking for Mikayla - then it sunk in! She loved being the center of attention!
Jim is still doing pretty well. Though I do see some "slippage" from time to time. Mom had to remind me today that "Shell... he can't help it" when I was complaining about something he had misplaced. I know that - but have been getting to comfortable with the "Old Jim" being back!
His pain seems to be more controlled on the new pain meds - however it still has its moments too. We have an appointment in a few weeks at the ALS neuro. I also ced his right hand seem more contracted even when at rest.
All in all - things are still pretty good. Now busy getting Mikayla ready for 1st grade and Ruthie is starting preschool in a couple weeks.
TIME FLIES!!
Friday, August 20, 2010
Sunday, August 8, 2010
Wow ... A Month has Flown By!
Things have been really busy....
Jim celebrated his 37th Birthday on July 23. Jim offically gave up his drivers license on his birthday and received a state id. It was kinda sad. There I was with him - tempted to have him keep it but knowing there is NO WAY he could drive. Just seems so wrong.
We went to Cedar Point as a late birthday gift. Honestly, I was anxious as hell to take Jim and the kids alone. However, things went REALLY well. Thank goodness we had a wheelchair with us (thanks to ALSA). The walking would have been way to much for him. It wasn't long though before I was pushing Jim and the kids around in the chair.
Jim is still doing really well mentally. I would say he is doing better then he was last fall. Though he is not 100% - I see the "old Jim" quite often. Several times this month he has given me that goofy "hewwo" he used to always say to people. The first time I heard him say it I nearly fell over - probably has been more then a year since the last time!
Not really sure what the mental rebound is a result of. There was only 1 low dose medication added for this - shouldn't make this big of a difference. As for me - I credit prayer!
However, as the cycle seems to go - mental symptoms are down and ALS symptoms are up. Though the changes don't seem to be as sudden or drastic they are still there. Jim has been complaining of a lot of pain especially around his ribs. It has been limiting his activity some what. He has also been having major tremors at night. These have been keeping him awake. The doctor just prescribed a higher dose pain medication 2 days ago but it seems to be helping. We follow up with the ALS neuro September 8. We still also have an appointment with the new FTD neuro October 8. Seems so far away --- but I know it will be here before long!
We have really enjoyed our pool this summer. The water and weather has been warm enough Jim has even gone in a few times! He seems very oversensitive to the water temperature. This is most likely due to the changes in his nerves. We have also noticed this sensitivity in his face as things like shaving become more difficult.
Jim has finally (realized? owned up? admitted?) not sure the word to use - that there is something wrong. However, his explanation is something is wrong with his muscles. This is a good thing - it helps me to convince him to not over due it all the time.
One last thing that happened this month - My good friend Katie lost her husband Glen to these horrible diseases. Katie and I met shortly after our husbands were diagnosed. In Septemeber Glen biked in an ALS fundraiser. Not even a year later he is gone. He took a sudden downturn and passed away June 30. He was 57. Though I never actually met Glen or Katie - his death has really hit me. I consider Katie one of my greatest friends on confidants. Please keep them in your prayers.
TEAM SHAGGY kicks ALS - please support Team Shaggy in the walk to defeat ALS. http://web.alsa.org/goto/shaggy
Jim celebrated his 37th Birthday on July 23. Jim offically gave up his drivers license on his birthday and received a state id. It was kinda sad. There I was with him - tempted to have him keep it but knowing there is NO WAY he could drive. Just seems so wrong.
We went to Cedar Point as a late birthday gift. Honestly, I was anxious as hell to take Jim and the kids alone. However, things went REALLY well. Thank goodness we had a wheelchair with us (thanks to ALSA). The walking would have been way to much for him. It wasn't long though before I was pushing Jim and the kids around in the chair.
Jim is still doing really well mentally. I would say he is doing better then he was last fall. Though he is not 100% - I see the "old Jim" quite often. Several times this month he has given me that goofy "hewwo" he used to always say to people. The first time I heard him say it I nearly fell over - probably has been more then a year since the last time!
Not really sure what the mental rebound is a result of. There was only 1 low dose medication added for this - shouldn't make this big of a difference. As for me - I credit prayer!
However, as the cycle seems to go - mental symptoms are down and ALS symptoms are up. Though the changes don't seem to be as sudden or drastic they are still there. Jim has been complaining of a lot of pain especially around his ribs. It has been limiting his activity some what. He has also been having major tremors at night. These have been keeping him awake. The doctor just prescribed a higher dose pain medication 2 days ago but it seems to be helping. We follow up with the ALS neuro September 8. We still also have an appointment with the new FTD neuro October 8. Seems so far away --- but I know it will be here before long!
We have really enjoyed our pool this summer. The water and weather has been warm enough Jim has even gone in a few times! He seems very oversensitive to the water temperature. This is most likely due to the changes in his nerves. We have also noticed this sensitivity in his face as things like shaving become more difficult.
Jim has finally (realized? owned up? admitted?) not sure the word to use - that there is something wrong. However, his explanation is something is wrong with his muscles. This is a good thing - it helps me to convince him to not over due it all the time.
One last thing that happened this month - My good friend Katie lost her husband Glen to these horrible diseases. Katie and I met shortly after our husbands were diagnosed. In Septemeber Glen biked in an ALS fundraiser. Not even a year later he is gone. He took a sudden downturn and passed away June 30. He was 57. Though I never actually met Glen or Katie - his death has really hit me. I consider Katie one of my greatest friends on confidants. Please keep them in your prayers.
TEAM SHAGGY kicks ALS - please support Team Shaggy in the walk to defeat ALS. http://web.alsa.org/goto/shaggy
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