Diff'rent Strokes is your source for information about Todd Thelin and his stroke recovery. Please feel free to add comments about posts, add new information in the comments, e-mail new information for me to post, or ask questions that we can answer. Keep in mind that posts are moderated, so they will need to be approved before they show-up. This helps fight spam.

Wednesday, September 2, 2009

Your prayers are needed

The disability management company who pays out on Todd's claim is getting ready to do another review. This entails reviewing notes from doctors Todd is seeing, paperwork completed by us, phone conversations I've had with his case manager, his RTW (Return To Work) plans, and any earnings he's made. I'm always nervous, nay, terrified when they do a review, that they are going to suddenly decide that he's fine, and kick us off disability with no warning. Even though his case manager has reassured me that they won't do that. But her job is to look out for the company, not her clients, as much as they both may claim otherwise. Or maybe it's just my inherited paranoia of "the system." IDK.

I believe this will be the one year review, in which they determine whether or not Todd is able to return to his former career path with less than 40% pay loss. Which at this point he is not. What makes me nervous is that he's not regularly seeing a doctor any more, other than the psychiatrist who is managing his psychiatric medications. All the other doctors and therapists have released him, to be contacted again on an "as needed" basis. And thankfully, they haven't really been needed. Except that it's going to look on paper as though he's back to his former self, which, while he continues to make great strides, is not the case.

At this point, what keeps him from working full-time are first, his fatigue, and second, his sensory reception. If he still had his old job to go back to, he could maybe go back if they were very willing to work with him on his schedule and make adaptive changes to his working environment (like allow him to arrive at work at a later time, take a 2-3 hour lunch so he could rest, give him an office, so that ambient noise wouldn't be such a problem, and allow him to gradually build up to being back full time...) but he doesn't have that job, and trying to find a job in this economy is hard enough without going into it with special circumstances like that.

Perhaps what I'll do is have him make some appointments with his doctors, just so that they have up-to-date opinions of his condition and deficits. While it won't be cheap, it's probably a better alternative than leaving it to chance and getting kicked off disability. Cause getting kicked off disability now would not be a good thing. At all. While Todd is working, making minimum wage 16 hrs a week wouldn't pay the bills. And while Oliver will be starting school, I'm still his (much needed) primary care person, and day care for a kid with special needs would probably cost about what I could earn, not to mention that I don't have the earning potential needed to pay our house payment even in the best of circumstances.

The other thing that we need your prayers on, is our insurance situation. We are currently on COBRA, and while the disability plan and the government have combined to make it affordable to us (Can you believe it? I used COBRA and affordable in the same sentence! There's a win for you, Obama), you can only stay on COBRA for so long, and I believe our coverage will end in Jan or Feb. And I don't know what we are going to do then. Because of Todd's and Oliver's preexisting conditions, I don't know if they are insurable through a private policy. And they are the ones who really need it. The cost of Todd's medications alone without insurance would bankrupt us in a matter of weeks. Not to mention that fall and winter are coming, bringing with them the colds and bugs that can cause ER visits for Oliver.

I'm waiting to hear from Oliver's teacher to find out how many hours a day he'll be in school, so that I can look into finding a job that won't take me away from him too much, and will provide insurance. If anyone know of something, please let me know. He'll be in school Mon-Thurs mornings, but that's about all I know.

Wednesday, August 26, 2009

First day of school

After a breakfast of smoked sausage, eggs, and wheat toast, and with sack lunch in hand, Todd was off for his first day of school. But first he has to put in his time at work, which means that today is his first day back to 8:00-5:00 since his stroke. We are cautiously optimistic.

He is entering the Visual Media program through SLCC, formerly the Applied Technical College. We don't have many details yet of how the program is run, if it's a "go at your own pace" thing as has been described, or if it's more like a standard 2-year degree. We'll know more this afternoon.

He chose this program after much thought and prayer on both our parts, and we are betting against the odds here. His doctors have told him that because of the nature of his brain injuries, his mind doesn't work the same as it used to, and in his case it affects his ability to think creatively. That's the short version. And that he will probably not be able to be successful at his old job. I, on the other hand, being no expert in the brain as they are, imagine that it could prove to be very good for him to get back to what he did before, and that in relearning his former skill set, that new pathways can be established, prompting further healing, and feeling that much closer to "normal." I suppose only time will tell, but your prayers in his behalf would be much appreciated.

As to working, they moved his hours to all mornings, starting at 8:30. Or it might be 8:00, he couldn't remember. I advised him to assume this morning it was 8:30, in order to get that little bit of extra (much needed) sleep, and take the "it easier to get forgiveness than permission" approach. And be on time from here on out. The great thing about this program, run through the LDS Church, is that their goal is the same as ours. For Todd to be able to support his family. Therefore, they have told him that he only has to work a minimum of 8 hours/week to remain in the program. As Todd said, we're not married to the money he's making there (though it's been REALLY nice) and the important thing is for him to get the training and get back on his feet. So for now we're giving it until the end of next week to see if the 8-5 is going to push him just enough, or burn him out, before he has them cut his hours back.

He works until 12:00 today (or maybe 12:30?) and class starts at 1:00, so if you want to call and wish him well you have a very small 30 min to 1 hour window in which to do it, but I know he would appreciate the well wishes, and knowing that people are behind him and rooting for him.

Wednesday, July 15, 2009

Happy Survivalversary

One year ago I got a call that Todd was very sick, and had been taken by ambulance to Jordan Valley Hospital. Oh, you mean VERY sick. I had no idea how sick until I arrived, and learned that he was unable to communicate, open his eyes, etc. Todd's dad met me there, and someone came eventually and took Oliver, the first of many times that I can't remember where he was or who he was with. Thankfully I knew he was safe and loved and cared for, and at that time, that was all the thought I could spare.

One year ago I truly didn't know if Todd was going to live or die. And the hospital staff wasn't super helpful either. I remember asking one Dr. "He is going to wake up eventually, isn't he?" And her response was "I hope so." They didn't even know what was wrong with him, and we heard everything from pneumonia to meningitis to epilepsy. But not stroke, because "he didn't meet the typical picture of a stroke" in that he was young, couldn't communicate, but could squeeze with both hands.

One year ago I was faced with the definite possibility of my life changing very drastically and very tragically. One year ago I didn't have the faintest clue how I was going to get through the terrifyingly unknown future.

If you could have told me one year ago where our family would be today, I'm not sure I would have believed you. I don't think I would have dared hope. From the darkest time in our lives, we have come through to an increasingly bright future.

Todd lives. He is here for me to hold and love, and to raise Oliver and teach him. He can eat. He can swallow. He can talk and communicate. He can understand. He can bathe and dress and shave and brush his teeth. He can stand, he can walk, he can drive. He can take out the trash, mow the lawn, vacuum, make the bed, clean up after Oliver. He can get himself out of bed, and get himself up and moving. He can WORK!

He still struggles with fatigue, and with his vision, and therefore, sometimes, with his balance. He still has difficulty in communication, both expressive and receptive. There are still glitches in his brain. He still has trouble integrating his senses, and thus they can overwhelm him. It has been a long road back, with big leaps at first, then smaller and smaller steps. There have been many dark times, with regressions and plateaus, but he has continued to improve.

Things happen for a reason, and some changes have been for the better. Even he realizes that some of the changes in him could not have come about any other way. He has been tempered in every respect. He is slower, more careful, thoughtful, and deliberate. More considerate and kind. More prayerful. The important things remain intact, like his loyalty, his work ethic, his love of others. He was always a good husband, but now has become a great one.

Today my heart is filled with gratitude. For the many prayers and fasts and works that were performed in our behalf, which carried me when I couldn't cope on my own. For good neighbors, good friends, and great family. For the doctors, nurses, therapists and aids who work tirelessly in their professions. For my faith and testimony which got me through the hardest moments. For the many, many blessings which were in place long before we knew we'd need them. And most of all, for Todd. For not giving up when that would have been the easiest thing. For his hard work and endurance. For his love, his strength, his companionship, his courage. I'm so grateful that, for what ever reason, Heavenly Father didn't see fit to take him Home last year. I, too, have grown over the last year, and we have grown together.

I love you babe. Truly, madly, deeply, and forever.

Sunday, July 5, 2009

Family vacation, attempt #dos

We took a little trip, the three of us.

After making it through a week of hell, in losing one of our dear friends (my best friend) to a pulmonary embolism, and the ensuing funeral, we hurriedly packed up our crap and headed out as one car in a five-car caravan to a family reunion in Yellowstone.

Attempt #1 at a family trip was back in Jan, when we went with Todd's family to southern Utah for his niece Kamry's baptism, which was successful only in that we all made it back alive. It was not fun, relaxing, or enjoyable. Todd had melt downs, didn't get enough rest or quiet, I was single-parenting a kid who still needed naps and wasn't getting them, (and refused to sleep in the car) and we were packed into a condo (albeit a nice one!) with 9 other people.

It's amazing what a difference 6 months can make. Oliver has grown up a little, and can get by for a few days with no nap (because he still stalwartly refuses to sleep in the car) and Todd has by now had several important improvements which made it far more possible for all of us to enjoy ourselves, including:
  • his medications being stablized
  • getting quality sleep using his CPAP consistantly
  • reduction in needed sleep down to a manageable amount (around 12 hrs)
  • increased attention span
  • ability to see his limits before he reaches them, and give himself breaks/time outs (usually)
We stayed in a cabin with one of my little sisters and her family. We had a bed. We had electricity (which was vital for running the CPAP so Todd could sleep, so I could sleep, and a loud fan so Oliver could sleep.) We had a bathroom. We had a refridgerator. Yes I know, not technically camping, but it was the closest I think this family will get for the time being. And maybe ever.

We drove through Yellowstone, saw some buffalo (and did not approach them or get gored), watched Old Faithful errupt, oogled some construction vehicles (Oliver's favorite part) and broke some federal laws (in our defence, though apparently it should be obvious, there were no signs posted about not walking on white sand.) We rode our bikes, and toasted marshmallows, and threw rocks in the lake (I skipped one 5 times, a personal record) took Oliver on a motor boat (LOVED it) ate a lot, talkied while we walkied, and celebrated Todd's birthday with a heart attack on the cabin and surprise brownies and ice cream.

I took very few pictures, and even less video. I wish I could have, but life is what it is, and at this moment in mine there isn't much room for documentation. So hopefully we made some good solid memories.

We planned on staying until Saturday and rolling out after breakfast, but an unforseen storm threatened to blow some of our group's tents into the lake. So they packed it up Friday night, and as we were planning on caravaning with them the next day, and were already mostly packed thanks to a mix up in reservations, and as we had by that time had all the fun we could stand, we headed out as well.

We got to Pocatello, which was about the half way mark, by about 1:00 am. Todd had driven the entire time, and was doing well, but I didn't trust either of our abilities to stay awake for an additional 3 hours, so we wound up in a Best Western room with another sister and her family, and can I just say....

Best $50 we've ever spent.

We had a lovely comfy bed with a poufy comforter and feather pillows, soft water, AC, Bath and Body Works toiletries, and best of all, a decent night's sleep. For most of us. Oliver woke up at 5:00 coughing, wheezing crying, screaming, and threatening to perfom his own special version of Old Faithful, so I was up with him for an hour or so sitting in the bathroom and doing breathing treatments. Everyone else was so dead to the world they didn't even hear him.

The next morning we woke up late, had an amazing (free) breakfast of waffles, doughnuts, cereal, juice, hot cocoa, buiscits and gravy, eggs and bacon. Best continental breakfast ever! Then we went swimming in the pool, which was great, since I hadn't had a chance to use my brand new bathing suit. Oliver loved it like a fat kid loves cake. He wasn't scared of the water at all, and it was nice and warm. He held on pretty well while Todd and I swam him around, he didn't cry when I dunked him under the water, and even put his own face in the water several times, without crying. He drank more than his share of pool water (just don't think about it) and got some great exercise and balancing practice standing on the steps up to his shoulders in the water. And even loving it as much as he did, he didn't cry when we told him it was time to go.

After we checked out we went to find a shady place to eat our picnic lunch (pita sandwiches and all kinds of camping type goodies) and ended up on the lawn of an LDS meeting house. We felt right at home. Especially when Oliver threw up all over the picnic blanket. Just like at home.

We made it home just in time to drop off some stuff, unload bikes and head out to Herriman for briskett and smoked beans and the most delicious ultimate strawberry tall cake at Todd's brother's house, when Oliver started wheezing again, and we had to pack it up early. We picked up the pups, who were having a sleep over at Papa Al's, and got home in time for bed. Thanks to a dose of steroids and the inhaler, Oliver seems right as rain, though behind on sleep, today. Todd is putting him down for a nap, and if I'm not mistaken, is probably taking one himself. Which is precicely what my plans are next.

And that, my friends, is that.

Monday, May 18, 2009

Service project, anyone?

I had a conversation the other day with one of my sisters about the ability to ask for help, which most people, myself included, are not so great at. But by necessity I've learned how to do it a little better over the last year. But I need a little more practice. And yep, the Thelins still need help.

We desperately need help with a couple of things. They are things that Todd v1.0 would have typically been able to do by himself or with my help, but Todd v2.0 is having trouble getting up the wherewithal, and getting organized to do it, I'm clueless, and we don't have the money to hire it out. So if anyone has expertise (or some experience, or even just willingness to learn by doing?) and wants to earn some brownie points (and hey, I might just throw in some actual brownies to sweeten the deal) we could sure use some help with:
  • Our sprinklers. Heads being replaced, a broken pipe fixed, basic stuff like that. We've never had sprinklers to deal with before. We did manage to get them turned on, figured out what zone is what, and even changed a wire to hook up one zone that was miswired. All by our selves! But the knowing how to fix stuff is beyond our realm of combined capabilities.
  • Hooking up ceiling fans. We bought fans just after we moved in last year, then Todd had his stroke, and I didn't want to install them in case we had to put the house back on the market. Turns out that we are blessedly able to pay our mortgage, for now, so they need to be installed before we wind up roasted and basted in our own juices. I think the fans need to have another wire run, because we just have light fixtures there now, and I want, if at all possible, to have both the light and the fan on dimmer switches. I know, picky picky.
  • And if you happen to have an aerator, or know some one who does, our poor lawn, which, crappy as it looks, is actually immensely improved over last year, needs it badly. So that when our sprinklers are fixed, the water can actually get down in there.
If you can spare a few hours to help with any of these things will you please call either Todd or me? Thanks for your continued help and prayers. With God, and with good neighbors, family, and friends, all things are possible.

Wednesday, May 6, 2009

Good bye, ranks of the unemployed, hello ranks of the under employed

I can't write a ton because, well, on top of it also being my first day back s a solo parent (you wouldn't think it would be this difficult an adjustment) I'm also sick as a dog. Or maybe a pig?

But Todd is working. He started today. He's working at Deseret Industries, (hereafter referred to as the DI) which is a thrift store/vocational rehab/humanitarian center run by the LDS Church, for those of you unfamiliar. He will be cashiering, and working 4-5 days a week, from 10-4:30.

This morning he got up and out the door on time, completely on his own, no nagging from me whatsoever. He drove today, but since the location is so near our house, he has plans to ride his bike on days when it's not raining or too warm, so he'll be getting some exercise to boot.

He will also probably be starting at the Applied Technology College. He's finding web design to be extremely difficult now, and will probably need to change directions career-wise.

I'll write more when I can think without it hurting.

Monday, April 20, 2009

What's been missing

We had a highly enjoyable time visiting with Todd's brother Tim and his wife Allison, who came for a week plus over Easter. It was a blast hanging out with them, and spending time with family, and was made even better by the return of Todd's spirits for the duration. It's been ages since I saw this smile:

Todd and Tim watching Electric Dreams. If you've seen the movie, you know that it's not really funny, but it's kind of a family cult classic. I've also witnessed how Halo 3 seems to bring back some of the "old Todd" in listening to him play with his brothers. How I love him! How I've missed his vibrant, vivacious, passionate personality! I find it very interesting how the stroke and life afterward has moved his personality from one end of the spectrum to the polar opposite. Both are good, the exuberance and the quiet contemplation. I just wish I could have both. Put them in a bag and shake them up. Redistribute. But like most things, it's a case of you don't know what you've got 'til it's gone, I guess. Hopefully I've learned the lesson, and some of the "Old Todd" will start creeping back in again.

Todd's still struggling with the sleeping issue. He sleeps from about 10:00 pm to about 11:00 am. He's driving himself crazy with it too. They are considering a couple of different medications to try to help, but I'm not convinced that that is the answer. Rittalin? Really? We have to go there?

Oh, and the Voc Rehab thing was kind of a joke. The meeting lasted all of 30 minutes. Todd left feeling even more discouraged, and we went back to the assumption that it would be up to us. We will have to create a program ourselves, and whatever help we can get from VR, from Disability, from the Church, we'll take, but we're pretty much going to have to rely on ourselves and our inginuity, and the Lord for this one. Todd will be meeting with our Bishop on Tuesday to discuss employment with the Church, in their Voc Rehab program with Deseret Industries. Because Todd is a highly educated person, I anticipate (and dearly hope) that he will be useful in a greater capacity than stock and donations. Office work, training, management, operations, perhaps. I wish I could go with and be his advocate, because he's likely to just do whatever, and not promote himself and his strengths, abilities, and tallents, and that simply won't do.

Tuesday, April 14, 2009

What today holds

Today Todd meets with his Vocational Rehab councelor, to set up his IPE (Individual Plan for Employment.)

This is a very good thing, which he had to qualify for, but in that is a two edged sword. On the one hand, it's great because they will help him to decide what he wants to do in the future, and find something meaningful and fulfilling to him which he is capable of, and provide him with the services to meet those goals. On the other hand, the letter was quite a shock to him, making it painfully clear that he is "most significantly disabled" (for the purposes of the VR program.)

Personally I don't consider him to be "most significantly disabled" in anything. Mildly disabled, or moderately so at the utmost. Sure he still struggles with things, but he's mobile, can take care of himself, and even Oliver for a bit occasionally, communicate, drive, and yes, work, eventually. But it was a shock for him to read that. I reminded him that it was for the purposes of the VR program and that that is a good thing, because it qualifies him for the program. But in my eyes, and I'm sure in everyone else who knows him, he's more Able than disabled.

So I know it's been what, 9 months now? But please keep us in your prayers. For Todd, as he goes to this meeting and starts the program, and as he continues to struggle through dealing with his deficits each and every day. And me, to have the patience and compassion and strength to continue to help him, and continue to keep going.

Saturday, February 14, 2009

What it's like in Todd's brain

I've recently been chided for not updating the blog, and I apologize.

First of all, a clarification of the last, cryptic post. We found out at the cognitive testing that Todd is very close to being ready to begin re-entry into the work force. Now, before you go getting a giddy and excited, understand that this doesn't mean that he's "cured" or completely recovered. And it by no means indicates that he's ready to hit the work force running.

Rather, it means that he's entering the next phase of therapy, with employment being a tool. He is to start very small, with basic employment skills like showing up on time, accountability for tasks, interacting with managers/coworkers, and the like. He will continue to work with his OT as he encounters stumbling blocks, and continue to move through more and more challenging occupations. You see how this is going to be a very tenuous, difficult, and frightening (for both of us) stage. How to obtain basic employment? How much to disclose? How to plan and train for and move ultimately to an entirely new career? How to pay our bills while we work toward that?

The reason I was so cryptic about it before was that I didn't want to risk posting something on here, and it some how getting back to his disability insurance that he was ready to go back to work, and have him get kicked off his disability policy, and us wind up with no income whatsoever, and no way to pay our bills, with Todd still not able to go back to work, and me still needing to do and be everything at home. (Though, don't get me wrong, Todd is very helpful, and does quite a bit at home, and is a huge help.)

We've learned that his policy includes a return to work plan, such that he can work, and as long as he works part time, and makes less than 20% of his former salary, it will not affect his disability pay out. As he starts to earn and work more, it's based on percentages, until he reaches 80% of his former salary. That's the basic gist of it, to my understanding.

Todd is now driving, and has no restrictions, which has been an enormous relief. Taking himself to therapy has enabled us to get Oliver back on a semi-normal schedule, so he's happier too. And it's nice to be back in the passenger seat. And this is a big step one to returning to work.

Todd went to an orientation for Vocational Rehab, and was left in doubt of how much they would be able to help. He was in with cancer patients, amputees, and parolees. From what we understand, Voc Rehab people tend to have a hard time helping people with brain injuries like Todd's. They do great with people who have obvious physical impairments to working, but when it comes to the finer cognitive deficits, they kind of don't know what to do. He's still planning on meeting with the counselor, so we'll see.

The biggest things he's still struggling with are fatigue and clarity (or lack thereof.) He still sleeps about 12 hrs a night, and is still tired all day long. More so if you add anything extra on top. Like appointments. Family get togethers. A rough day with Oliver. Staying up too late. Illness. You can see how that will be a big impediment to working.

He feels like he's trying to think through a fog, like everything takes longer, is harder, and more taxing. He mentioned that he has brief moments of clarity though, which is very encouraging. The Dr. pointed out that with his speech, he started off not being able to say anything. Then he could get a few words out, but they didn't make any sense. Then he gradually started making a little sense, but most of the time it was still nonsense. As he progressed the balance shifted, and most of the time he made sense, but still had many times when he didn't, and it was made worse but fatigue and exhaustion. Now he pretty much makes sense all the time, but there are times when he gets what he's trying to say just the tiniest bit confused. The Dr. anticipates that his thinking will do likewise, and become more and more clear as time goes on. He may still have some lingering foggy patches (our experience talking to other brain injury survivors indicates this is so) but in general he will probably get to where those are relatively few and far between. There are no guesses as to how long this will take, however, and it's this nuance of thought that makes him unable to work.

Take a moment to sit back and close your eyes, and imagine staying up all night, then taking some NyQuil or Dramamine, or getting drunk, perhaps, and if you're female, add in some PMS or pregnancy emotionalness, and feeling like that each and every day, with no respite, and you'll have a notion of what Todd deals with every day.

And then imagine trying to work.