Been pondering the changes we've already seen in our lives. Being aware of Glen's moods before we go out... is he hydrated, rested? If not he'll often get agitated or withdrawn.. making the outing more stressful for everyone. Planning around doctor appointments (we have three this week, and an all-day one next week). Just doing research.. making sure I'm as knowledgable as possible about this stupid disease so that I know what questions to ask, etc. Lawyers, financial advisors, on and on. All the while having a house and yard to keep up, pets to care for (Baron's only 18 months old... bless his heart, I think he's an old soul in a new body but still, his training is nowhere near where it should be by now) We are very blessed to have some amazing support people.
Interesting yesterday.. just to give me a break, Kevin took over the "insist glen stays hydrated" for the afternoon. Wrote out ahead of time that Glen was to finish three glasses of water before dinner. Normally, I would get an argument, but for some reason the note from Kevin worked... and Glen was much clearer in the evening. Kind of validates our belief that he's not taking in enough fluids.
He had a bit of an accident Saturday. Given the triple digit heat, I didn't think a run/walk outside was a good idea so suggested he go to the Y instead (air conditioning goooood). Even he acknowledged later, his "denial" got in the way, and when he went down there, he chose to do the treadmill and set it at a rate he could have done a year ago. Unfortunately he couldn't keep up and took a bit of a spill. He's fine.. skinned knee and bruised hip. Since then he's used the elliptical machine instead and seems to be enjoying that. Going to try to get him to use the pool too... he may be surprised at how easily he can "run" in the water!
Monday, August 31, 2009
Thursday, August 27, 2009
Finally got our referral to UCSF! We have an appointment on September 9 at 8 in the morning (Ugh!! I thought my days of driving to San Francisco before dawn were done!!) They will do a full bank of tests and evaluations and then recommend treatments and therapies accordingly. They too think Dr North and his staff are wonderful! Nice to know they work well together!
Tuesday, August 25, 2009
Little bit of a scary moment this morning... Glen got disoriented leaving before sunrise (he always leaves before sunrise, but there were no lights on anywhere this am)... ended up trying to get to the garage through the bedroom wall. We got it all straightened out though.
Had our first support group meeting with Dr North tonight. Very nice group of people. Of the 5 people with ALS there, no two had the same group of symptoms. They ranged in age from 30-something to a very active, vital 81. Mobile to wheel-chair bound. One lady was there alone, as her mom is in hospice now. One gentleman is going to do the ALS Walk the same day Kevin does his bike ride. Talk ranged from PEGs (feeding tubes) to drug studies to how to support caregivers. And Dr North is quite simply the best.
And the donations for Kev's bike ride keep coming in! You guys are the best too!
Had our first support group meeting with Dr North tonight. Very nice group of people. Of the 5 people with ALS there, no two had the same group of symptoms. They ranged in age from 30-something to a very active, vital 81. Mobile to wheel-chair bound. One lady was there alone, as her mom is in hospice now. One gentleman is going to do the ALS Walk the same day Kevin does his bike ride. Talk ranged from PEGs (feeding tubes) to drug studies to how to support caregivers. And Dr North is quite simply the best.
And the donations for Kev's bike ride keep coming in! You guys are the best too!
Monday, August 24, 2009
According to Glen he "slept great!" last night, so we'll try the melatonin and warm milk again tonight ... maybe we can string two good nights together.
He actually seems to be making some quick progress with the hand therapy. Even though the ALS general rule is once muscle is lost it's lost, the therapist said she thought she could get some use of the small hand muscles back. The first day we started the exercises it took the full 10 minutes to get through 1 1/2 sets, with great difficulty. Tonight, he did two full sets with relative ease, and didn't need a rest break. It was good to see.
A friend from UTC has joined the Gears for Glen ride team along with his wife and daughter! Glen's nephew Brian is also going to try to join the ride. This is really shaping up to be a fun event, and the fund raising continues as well. At last check, Kev's personal fund raising was a little over $2600, and the team total was over $2800. Kev has raised his goal again, to $3000.
He actually seems to be making some quick progress with the hand therapy. Even though the ALS general rule is once muscle is lost it's lost, the therapist said she thought she could get some use of the small hand muscles back. The first day we started the exercises it took the full 10 minutes to get through 1 1/2 sets, with great difficulty. Tonight, he did two full sets with relative ease, and didn't need a rest break. It was good to see.
A friend from UTC has joined the Gears for Glen ride team along with his wife and daughter! Glen's nephew Brian is also going to try to join the ride. This is really shaping up to be a fun event, and the fund raising continues as well. At last check, Kev's personal fund raising was a little over $2600, and the team total was over $2800. Kev has raised his goal again, to $3000.
Sunday, August 23, 2009
Went to Mill Valley yesterday for the wedding celebration party for Glen's brother Mark and new wife Joan. (Nice party guys... those mushrooms were amazing!!!)
Glen seemed to have a good time. He was pretty tired by the time we got home... the good news being after his therapy exercises, some warm milk and a melatonin tablet, he said he actually slept pretty well.
I would like to see him take a little more responsibility for decisions, therapy, etc... he's a little too willing to let me do it. Being passive is not something you want to do with this disease.. you need to fight it every step of the way. I've told him I would like to see him work a little harder focusing on what he still CAN do, rather than dwelling so much on what he can't... he can still work, still drive, still walk, still breathe! These are very good things!
Not much coming up this week.. pick up the equipment for the sleep test, support group meeting on Tuesday. No doctor appointments that I know of. Ordered some adaptive items last week.. I think the long handled comb he's gonna like!
Glen seemed to have a good time. He was pretty tired by the time we got home... the good news being after his therapy exercises, some warm milk and a melatonin tablet, he said he actually slept pretty well.
I would like to see him take a little more responsibility for decisions, therapy, etc... he's a little too willing to let me do it. Being passive is not something you want to do with this disease.. you need to fight it every step of the way. I've told him I would like to see him work a little harder focusing on what he still CAN do, rather than dwelling so much on what he can't... he can still work, still drive, still walk, still breathe! These are very good things!
Not much coming up this week.. pick up the equipment for the sleep test, support group meeting on Tuesday. No doctor appointments that I know of. Ordered some adaptive items last week.. I think the long handled comb he's gonna like!
Thursday, August 20, 2009
So we started the actual hand therapy exercises yesterday. Kevin and I went to Target and bought two bins and a bunch of objects... fuzzy tennis balls, raquet ball balls, a large resin cow, a not so large resin pig, a softball, a baseball, a couple of Aloha print nerf footballs, and the best.. a Hot Wheels bright yellow Ferrari. The goal is to move the items from one bin to the other by actually grasping and lifting them. When she told us 10 minutes a day, it sounded like an awful lot of time for a simple task. Shows what I know!
Since Glen's right hand is weaker than his left, we're supposed to focus primarily on the right. So with Kevin as our timekeeper, Glen began moving items. Well let me tell you... the man CHEATS!! Wanted to use both hands, or press the object up against the side of the bin and roll it into the other one! Harumph! I moved the bins further apart, and if he used two hands, he had to put it back and start again! And in that way, he moved all the items with his right hand, then back to the first bin with his left hand, then again with the right. He needed a break after each hand, and it was obviously a LOT of work... but he was a real trooper, and the three of us were able to keep it fairly light and laugh a lot. After the three sets... the timer went off! wow.
He seems to be having trouble sleeping again... sometimes because of anxiety (he doesn't like it if one of us is out when he goes to bed.. lays awake listening for the garage door). Changing the times of medications seemed to help for a while, but now he's struggling again. May need a different bed, or different pillows, or some actual sleep meds... if it keeps up I will call the neurologist's nurse, a wonderful lady named Robyn, and find out if she has any suggestions.
And... he has to do the sleep study again. They didn't tell us why. Could be the equipment wasn't on properly, or he just didn't get 4 hours of sleep that night, or... well, who knows. So he has an appointment next week to get the equipment to try again.
Later same day: This was posted by the alsa.org Facebook page. Nice perspective: http://www.latimes.com/news/opinion/la-oe-welsh26-2009jul26,0,5173890.story
Since Glen's right hand is weaker than his left, we're supposed to focus primarily on the right. So with Kevin as our timekeeper, Glen began moving items. Well let me tell you... the man CHEATS!! Wanted to use both hands, or press the object up against the side of the bin and roll it into the other one! Harumph! I moved the bins further apart, and if he used two hands, he had to put it back and start again! And in that way, he moved all the items with his right hand, then back to the first bin with his left hand, then again with the right. He needed a break after each hand, and it was obviously a LOT of work... but he was a real trooper, and the three of us were able to keep it fairly light and laugh a lot. After the three sets... the timer went off! wow.
He seems to be having trouble sleeping again... sometimes because of anxiety (he doesn't like it if one of us is out when he goes to bed.. lays awake listening for the garage door). Changing the times of medications seemed to help for a while, but now he's struggling again. May need a different bed, or different pillows, or some actual sleep meds... if it keeps up I will call the neurologist's nurse, a wonderful lady named Robyn, and find out if she has any suggestions.
And... he has to do the sleep study again. They didn't tell us why. Could be the equipment wasn't on properly, or he just didn't get 4 hours of sleep that night, or... well, who knows. So he has an appointment next week to get the equipment to try again.
Later same day: This was posted by the alsa.org Facebook page. Nice perspective: http://www.latimes.com/news/opinion/la-oe-welsh26-2009jul26,0,5173890.story
Tuesday, August 18, 2009
Occupational Therapy
First, wanted to move this to the top: Curbstomp ALS!!
Now.. on to occupational therapy:
No.. it does not mean talking about the stresses of your job!! Actually, we met with a "hand therapist" in the occupational therapy department. She did considerable testing on range of motion in Glen's wrists and shoulders, pinching ability, grasp strength, etc. We were there for quite a while and left with a 4 part homework assignment. (Good thing I bring notebooks everywhere!)
Step 1: Spend 10 minutes 2x a day moving articles of varying sizes from one container to another... golf size whiffle ball, baseball, fuzzy stress ball.. whatever things of various shapes and sizes we put together.
Step 2: Stretching. Lots of stretching... especially back neck and shoulders. He has a page of exercises to do. I learned them too.. my neck feels better than it has in ages!
Step 3: "Work conservation" The idea here is to avoid working to exhaustion in any activity. Plan a run or bike ride so that it doesn't totally use up your energy. Don't stand if you can sit. Don't lift if you can push or slide. That kind of thing. This one's going to be a challenge.. totally goes against Glen's nature!
Step 4: Kathlyn (the therapist) sent us home with a catalog of "adaptive equipment"... all kinds of nifty gadgets to help with buttons, holding a fork or toothbrush, make it easier to comb his hair... all those little things the rest of us take for granted that will help Glen maintain independence. Now... Kevin & I are the gadget junkies... we're going through it "oh, that's cool! Hey, we could MAKE that!" But again... Glen would have to admit he's having an issue with something before actually asking. So Kev and I keep ours eyes open to what seem to be issues, then make or order appropriate "toys" and leave them available.
We will see Kathlyn again in about 2 weeks.
Now.. on to occupational therapy:
No.. it does not mean talking about the stresses of your job!! Actually, we met with a "hand therapist" in the occupational therapy department. She did considerable testing on range of motion in Glen's wrists and shoulders, pinching ability, grasp strength, etc. We were there for quite a while and left with a 4 part homework assignment. (Good thing I bring notebooks everywhere!)
Step 1: Spend 10 minutes 2x a day moving articles of varying sizes from one container to another... golf size whiffle ball, baseball, fuzzy stress ball.. whatever things of various shapes and sizes we put together.
Step 2: Stretching. Lots of stretching... especially back neck and shoulders. He has a page of exercises to do. I learned them too.. my neck feels better than it has in ages!
Step 3: "Work conservation" The idea here is to avoid working to exhaustion in any activity. Plan a run or bike ride so that it doesn't totally use up your energy. Don't stand if you can sit. Don't lift if you can push or slide. That kind of thing. This one's going to be a challenge.. totally goes against Glen's nature!
Step 4: Kathlyn (the therapist) sent us home with a catalog of "adaptive equipment"... all kinds of nifty gadgets to help with buttons, holding a fork or toothbrush, make it easier to comb his hair... all those little things the rest of us take for granted that will help Glen maintain independence. Now... Kevin & I are the gadget junkies... we're going through it "oh, that's cool! Hey, we could MAKE that!" But again... Glen would have to admit he's having an issue with something before actually asking. So Kev and I keep ours eyes open to what seem to be issues, then make or order appropriate "toys" and leave them available.
We will see Kathlyn again in about 2 weeks.
Monday, August 17, 2009
Followed up with Kaiser about the UCSF referral. Robin at Dr North's office is as nice as advertised. She admitted things were running a little slow (down one nurse due to swine flu!) but assured me that the referral and the all important authorization have now been forwarded to UCSF and the appointment information should be forthcoming fairly soon! I'm thinking about booking a hotel the City the night of the intake tests.. a little r&r might be good for both of us!
Heading to Mark & Joan's reception this weekend... again, getting out might be good for all.
Still having problems with keeping Glen hydrated after runs (actually run-walks now). I'm thinking some of it might be psychological... because he's walking as much or more than running, he doesn't acknowledge he's working just as hard and need to be hydrating!!
Switching to a glass with a straw for the gatorade helped some, but he still didn't seem to be taking in enough. Went to the store and got Superhero Popsicles!! Two Incredible Hulk pops later, and he seemed much perkier!
Heading to Mark & Joan's reception this weekend... again, getting out might be good for all.
Still having problems with keeping Glen hydrated after runs (actually run-walks now). I'm thinking some of it might be psychological... because he's walking as much or more than running, he doesn't acknowledge he's working just as hard and need to be hydrating!!
Switching to a glass with a straw for the gatorade helped some, but he still didn't seem to be taking in enough. Went to the store and got Superhero Popsicles!! Two Incredible Hulk pops later, and he seemed much perkier!
Thursday, August 13, 2009
Hot weather again today, and again Glen had to walk part of his run route. It seems like hot weather is going to be an issue for him.
On a brighter note, fund raising for Kev's bike ride is going very well. He's almost halfway to his goal already... and is even considering raising his goal! It's very exciting and speaks to what wonderful friends and family we have.
Physical therapy starts next week.
On a brighter note, fund raising for Kev's bike ride is going very well. He's almost halfway to his goal already... and is even considering raising his goal! It's very exciting and speaks to what wonderful friends and family we have.
Physical therapy starts next week.
Wednesday, August 12, 2009
Glen & Kevin to do ALS Ride together!
Kevin saw the announcement for the Ride to Defeat ALS and immediately decided he was going to do it. This year he's going to do the 10 mile ride so his dad can do it with him! Glen's having some difficulty exercising in the heat, but can still do 8 miles on his bike comfortably, so the 10 miler should be ok. We'll double check with Dr North but his mantra seems to be if you can do it, go for it!
While we are still working on e-mailing everyone to invite them to make a donation, or just follow along, here's a link to Kevin's page for the ride, including donation information:
Curbstomp ALS!!!
For those familiar with video games, yes.. it's a Gears of War reference. And the team name is Gears for Glen.
Appointment with the throat doctor today. While we're all getting pretty matter of fact about swallowing issues, it would be nice if the doc and speech therapist can give a little more help to avoid "food getting stuck."
While we are still working on e-mailing everyone to invite them to make a donation, or just follow along, here's a link to Kevin's page for the ride, including donation information:
Curbstomp ALS!!!
For those familiar with video games, yes.. it's a Gears of War reference. And the team name is Gears for Glen.
Appointment with the throat doctor today. While we're all getting pretty matter of fact about swallowing issues, it would be nice if the doc and speech therapist can give a little more help to avoid "food getting stuck."
Monday, August 10, 2009
Funny how perception can change... I was thinking things should be pretty calm this week. Kev's basketball game tonight, support group meeting tomorrow, ENT appointment for Glen Wednesday plus appointments need to be made with speech therapist, physical therapist and accupuncturist. But everything can be timed for after work for Glen, so yeah.. a little slower than the past few weeks.
Speech therapy is an important one.. she works with Glen on breathing well and swallowing safely. Physical therapy is to help with range of motion.. especially in his hands and shoulders right now. Dr Wang, the accupuncture genius, has worked with Glen and Kevin both on sports injuries. Not really sure exactly what he can do.. .but we're going to ask!!
Speech therapy is an important one.. she works with Glen on breathing well and swallowing safely. Physical therapy is to help with range of motion.. especially in his hands and shoulders right now. Dr Wang, the accupuncture genius, has worked with Glen and Kevin both on sports injuries. Not really sure exactly what he can do.. .but we're going to ask!!
Sunday, August 9, 2009
Saturday, August 8, 2009
The Journey Begins
If you're reading this, you probably already know the start... On Wednesday, July 15, Glen was diagnosed with ALS, or Lou Gehrig's disease. I've been looking for a way to keep our friends and family updated ... I love you all, but well.. if I tried to call each and every one individually I'd never get the dishes done or the dogs groomed!!
I will try to be consistent with posting.. bear with me if I sometimes don't. I do get a little whelmed over once in a while. I will also try to share more than just medical updates! In September Kevin and Glen and perhaps a couple of friends are going to do the ALS ride in Napa! (Yup, you'll all be hearing about fundraising!) In October, we'll be going to Disneyland to celebrate Glen & Sharon's birthdays. There is plenty of joy in our future and lots of good memories yet to be made. So... come share the journey with us!
I will try to be consistent with posting.. bear with me if I sometimes don't. I do get a little whelmed over once in a while. I will also try to share more than just medical updates! In September Kevin and Glen and perhaps a couple of friends are going to do the ALS ride in Napa! (Yup, you'll all be hearing about fundraising!) In October, we'll be going to Disneyland to celebrate Glen & Sharon's birthdays. There is plenty of joy in our future and lots of good memories yet to be made. So... come share the journey with us!
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