Thursday, October 8, 2009

New Developments/Technology

All--it has been a while since I've posted. Let me bring you up to speed.

Pete started The Challenge Program at TIRR Kirby Glen at the end of August. I had expected mid September, and was very happy to get him in sooner rather than later. He is there either 3 or 4 days a week, spending 1 to 3 hours in physical, occupational or speech therapy and several other hours in groups and classes. Some days can run to 5:00 p.m., which makes for a late afternoon. He has been doing very well and I can't imagine it is not immensely helpful for him to have contact with others who are in the same boat as he is, if on different levels. I have noticed significant cognitive improvements as well, and an improvement in his overall out look on things.

He has been dealing with a very serious case of muscle spacticity. Basically, the brain sending way too many messages to his left side trying to get it all to work. This makes his therapies very difficult and also is very uncomfortable. You know how you're falling asleep and something jerks and you are wide awake again? This happens to Pete all the time. There is an effective treatment for the problem in a drug called Baclofen. Unfortnately, it has some pretty obnoxious side effects. It has another method of delivery with a surgically implanted pump to provide a continuous flow directly into his spinal fluid. He went on Monday to have a trial and it went very well. I have just spoken to the surgeon's office and he is now scheduled for surgery on November 19.

After some recovery time, probably 6 or 8 weeks, he will do another stint as an inpatient at TIRR. Neither of us are very impressed with this concept, but it will be essential to build strength in his lower body.

After the trial, they pulled on him in every direction. Basically, bent him around like he's gumby! After that, they put him on a thing called a Gait Mat, which is a long mat attached to a computer to see how evenly he can walk. They put him in a forearm crutch and he did very well, and after he had several steps down, it looked fairly normal. This is the effect of the Baclofen working on him. I can only see good things in the future with him using this.

More later.

Thursday, July 16, 2009

Our tax dollars at work!

As you may know, Pete was discharged from the outpatient therapy program at TIRR back in March for a couple of reasons. First, the medications he was on were making it impossible for him to focus on his therapy. Second, our insurance benefits were getting close to gone. Well, "close to gone" meant, absolutely no more coverage.

Since then, I have been working on getting him some additional assistance through whatever agencies might be of assistance. Through the aid of one of the attorneys in the office, I have gotten in contact with PTB (powers that be) in Austin in the Department of Aging and Rehabilitative Services (DARS). We got an initial appointment in mid-May to get into the system and get the ball rolling. We had delays because of medical records, and what I consider to be a pretty bad attitude on the part of one of the coordinators at TIRR, who discouraged me from working with DARS in the first place.

Today, we went back for a follow up, and to sign an Individualized Plan for Employment, with a goal of getting Pete's butt back in a desk chair planning and scheduling maintenance jobs. What he will be getting is 32 weeks of Challenge counseling (memory work, group assistance, etc) and a full hour of PT, OT, and Speech Therapy at each session. In addition, they will provide transportation assistance, either by paying an individual to do it or by providing a service to carry him back and forth for the sessions. I was really floored. All I had read told me he would not be eligible for physical or occupational therapy as a stroke patient, only cognitive rehab. I had been looking into a private pay physical therapist to get him back on his feet (literally) and it would have been a stretch and not the same quality as TIRR, but something. Looks like that won't be necessary at this point.

From the local office in Richmond, his file will be transferred to a coordinator in Houston who will work with Challenge to get the ball rolling. As you can imagine, I'm happy for that to happen, I don't know, say, TOMORROW. The counselor will also be referring him to an employment counselor/advocate who will help Pete in that way too. I should expect to hear from the woman in Houston in the next couple of weeks and then he'll be on his way.

Tuesday, April 14, 2009

An update

I hope everyone had a happy and blessed Easter weekend. Friday was my first day really off work since January 2 and let me tell you what, I really needed it! Now I just have to wait until Memorial Day which is only 42 days away.

Things in the Beins household since February have been sort of up and down. Pete had a very bad reaction to the Keppra. I think the only way to describe it would be to say it turned him into a sleepwalker. Pretty zoned out and that's just not our Pete (unless he wants to be). I spoke to the doctor and he said that's a rare occurrence with Keppra but it does happen and got him onto something else. Getting off the Keppra took 3 full weeks of reducing the dosage, but it was so worth it! Almost immediately, he responded and is doing so much better. There has been no sign of further seizure activity, so we'll see how quickly we can get him off this medication.

Pete was discharged from TOTS on March 16. We've continued to work on his home program and he continues to do well. Our next stop is expected to be the Challenge program through TIRR, but we're not exactly sure at this point, there may be other plans more fitting his situation. Pete very much wants to get back to work, and continuing with his therapies are the road to that point.

Sometime early this month, he had an appointment with the neuropsychologist to see how he has progressed since his discharge from inpatient treatment. The doc gave him an A+ and said he is at the outside edge of what they had hoped for (but not expected) on his discharge.

Yesterday, we had another visit with the low vision specialist at U of H. Pete has done exceptionally well with the "yoked prism" therapy. The left side neglect is much less pronounced and he's got a much better picture of "where he is" in the world. This is a huge improvement.

I've been asked a few times what can we do for Pete. The only way to help Pete is to encourage him and keep his spirits up. It is very hard for him to see much progress in his recovery, although he has. He is not comparing himself to how he was doing on November 15 when he was released, he is looking at how he was on August 24. It would be very difficult to get your head around the idea of spending a couple of years getting back what you lost overnight.

Wednesday, February 25, 2009

6 months, wow

That's not enough time to grow a baby, but look at all that's happened!

Six months ago tonight, I was coming home about this time, still in a pretty good amount of shock, that really hasn't worn off that much. Of those 180 days, Pete spent 21 at Methodist then a week at TIRR then a couple days back at Methodist and then 50 some days at TIRR. So about 85 days in the hospital and 95 at home. And it seems like he was in the hospital forever, and probably a little longer to him.

I would have never made it through as well as I have if it had not been for our family, friends and supporters who have followed this blog and otherwise prayed for us. Believe me, what strength I have, I know comes from above.

Since developments are much less common, I have not updated the blog very often. I know that many people check in regularly to see if there's an update. Be sure if something happens, you will know, even if it's a little delayed.

Last Saturday (Valentines Day), Anna and I went to The Little Gym like always and when I came home, I open the door and see Pete's chair, sitting there, with no Pete in it. Heart on the carpet already, I go over to where he is and he's laying on the floor, with no idea how he got there. I called a friend who had the good sense to marry a doctor and relayed his condition and he thought Pete probably had a seizure, which is a pretty common event after a stroke. He perked up very quickly, which meant we didn't get to spend Valentines Day at the ER. We went to see the doctor on Monday and were told yeah, around 6 months is about when the brain has done a bunch of rewiring work and sometimes seizures happen. Pete will take some medication for a few months to make sure everything is A-OK.

Last week, we had an appointment at the eye doctor. After doing a million tests, it's confirmed that Pete has no loss of visual field, what he has is a serious problem with neglect. He will not look at certain parts of a page of text. I hide things from him on his left side, including things like, well, part of his dinner that goes on the left side of the plate. I've been told to get on the "torture Pete" bandwagon.

On a sad note, over the weekend, Pete's dog Dusty went to be with his old buds, Max, Lizzie, & Sadie to run and play in the clouds, somewhere that he is young and frisky, with no grey in his muzzle and no hind leg that hurts when it's cold out. Dusty was a good dog and a good friend to Pete. Anna has not noticed, but she seems to understand being "in heaven" means not here. So, we have been asking God to bless Dusty in heaven.

Today, I picked Pete up from his outpatient therapy and he told me that on Friday, the PT wants to get him up and walking, but not on the locomat, not with the "moses stick" but with a walker. He went some today, but not for long.

The botox injections in his upper body have had a very good effect on the toning in his arm and hand. He has so much better range of motion, including being able to bend is wrist back about as far as I can. Tonight, I asked him to squeeze my hand and he was able to fold his fingers around mine. This is a new development. If he's done it before, it was more involuntary.

We keep moving day by day with the therapies and appointments and homework and exercise. Needless to say, between shuttling him hither and yon, taking care of Anna and the house and working, I'm getting pretty tired and just a little punchy sometimes. Your continued prayers for my fortitude would be appreciated, by more than just me.

I hope to continue to post developments and improvements over the next several weeks and months. What I said before about this being a marathon, not a sprint, was no lie.

Monday, February 9, 2009

More torturous events.

One of the serious problems Pete has been experiencing is muscle spasticity or toning. Think about when you've slept "wrong", you wake up all stiff, and your arm takes a while to loosen up. This is a much more serious version of the same thing. Pete's Achilles tendon, hamstrings, pectorals and arm tendons have gotten tight and short like I mentioned before. To describe how it looks, when he stands up, his left leg looks sort of like a flamingo's leg. Sort of bent at the knee with the foot up and hanging.

So, we go to the TIRR outpatient clinic at the end of January to get Pete shot up with Botox. When we started, his blood pressure was a little higher than I'm used to seeing, but I have to guess, a little apprehension is pretty normal. So while we wait (and wait and wait) I look at this poster on the wall. It has pictures of patients with various types of spastic muscles. The first picture is an older man (based on the picture of chest and arm) with an arm like in a sling across his middle. It goes all the way to people with arms and hands in very unnatural and painful looking positions. I pointed out to Pete the guy with the sling look and told him he was a lucky man, because that's as serious as his was.

The way this is done is pretty fascinating, I guess if you're the one not on the table. The nurse brings in like 15 syringes, and the doctor pulls over this computer. She takes the needle off the syringe and replaces it with a more flexible needle (kind of like the thing they use for an IV) and attaches it to an electrode that is attached to the computer. She says, "stick" and puts it into his pectoral muscle on the left side and you hear this crackling noise, and she looks for the spot that has the worst crackling, and starts shooting it there. She moves and goes from spot to spot on his left arm. You could tell when she hits someplace not toned, because there's no noise. She also got right into muscles and tendons going into each finger. She put some electrical stimulation onto the needle so his fingers moves and she knows when she's got it. There was just enough botox left to do a couple of shots into his left leg. He gets to come back for the leg stuff.

Botox takes about 10 days to get to "full potency". Over this last weekend, I could move his arm to about 90 degrees away from his body to the side. The bad thing is that the drug that releases the toning, also relaxes the muscles so he doesn't have much strength in that arm. I am able to do a bunch more stretching on him than I was before.

Last Wednesday, he went in for Phenol injections. Yeah, both of these medications are poisons so they're pretty careful how much they use, and they couldn't do both at one time. This time the left leg was the focus. The toning is much better, but the muscles are weak. The PT is working on that, and the OT is working on the arms. His wrists, which had no range of motion outward can now bend to about 45 degrees, I can bend his ankle much better than negative 10 degrees.

Tonight we ditched the transfer chair for Pete's shower. Let's just say we did some fancy dancing in the bathroom. He did take a few little steps, but really, those weren't real steps, more just moving inches at a time around in a circle. It's a start.

Monday, January 19, 2009

How they torture my honey.

Those of you who really know Pete are thinking, well I think a little torture is just what he needs, Lord knows he's meted out a pretty good share of it himself. Well, you may still feel that way, but maybe a different sort of torture is in order.

Since we had the doctor's appointment on Friday, we had to reschedule his therapy, including OT to another date. They could get him in for OT on Saturday and he went for an hour. Anna and I went to Target to do some shopping, and can you believe I couldn't come up with enough stuff to look around Target for an hour? I know, it's sad. Anyway, we got back up to TOTS with about 15 minutes left in the session.

We come around the corner and look in the window and Pete's laying on his stomach on a mat with his left arm underneath him, kind of like if you were laying down and pushed yourself up onto an elbow. The OT has determined that he does not have a dislocation of the shoulder, but that the tendons are weak and toned, and just like on the hamstrings, the only way to remedy that situation is to have it bear weight. So, this is the best way to do that. After Anna and I got there, the therapist asked her to help, here sit on this chair and hand daddy these rings. Of course, the purpose of this is twofold, first to keep his right arm off the mat and not let it help the left arm, and to get him to pay attention to the left side.

Needless to say, this hurt like hell, a little Tylenol and ice took care of it though. We'll keep torturing him until he can pull that table saw out of the shed by himself. Not that I'm going to let him use it or anything, but he can pull it out.

Friday, January 16, 2009

Happy New Year!

Wow! Things have been crazy busy around here. Pete and I continue to work through the constant readjusting of our lives around the stroke. He is in therapy 3 days a week, and is making good progress.

He has developed some significant muscle spacticity or "toning" in his left arm and leg. This means we need to do lots of stretching, which I have to tell you, is giving me a pretty darn good work out! I have been feeling very guilty over the toning, that I have not been working him out well enough since his release from TIRR. There's only so much a girl can accomplish in a day, but this is very important.

Because of the toning, his PT at TOTS wanted him to go see the rehab doctor about having botox injections as muscle relaxers in his hamstrings and biceps. I had no idea there was a medical application for botox, I'm glad to hear it. We went to see Dr. Shah today. Pete was examined by a PT and an OT in the clinic and he did have 3 joints that are within normal limits, his wrist going down is very flexible, his elbow bends all the way up to his shoulder, and his knee will bend enough to put the back of his foot all the way to his bottom. The remainder of the joints are anywhere from minus 10 degrees (his foot at the ankle) to 60 to 70 degrees. I was feeling really crappy about this, but was told that the toning is absolutely to to be expected during the rewiring process.

The PT and OT finished their deal and then waited for Dr. Shah before they got Pete up to walk some. I realized, it was the first time I'd seen him walk. Obviously, I've seen lots of standing, we have standing practice every day, but no walking at all. Now that's a moving experience, although his gait is hard to describe, other than to say AWFUL! While we were there, a woman came in the exam room wearing a suit. She got down on the floor and pushed his heel onto the ground at each step and he did so much better. It turns out she is a representative for a company that has a product called walk aid. This is a medical devise that sends an electric pulse into the calf into the nerve that will cause the foot to lift was you take a step. Can you believe, there's a nerve that actually is responsible for this? So she started hooking him up to this contraption, which she says causes some patients pretty significant pain until they get used to it. I'm thinking, eww, don't like that. Pete tolerated it very well, and she'd hit the button and his foot lifted right up. The purpose of the devise is to retrain the nerve to send the right message to Pete's foot.

I asked Denise (the "she" aforementioned) if she'd ever heard of a company called Bioness and their product. She said yes indeed, and this is very similar but it is a single unit that doesn't require the shoe insert or the remote "control" part. Anyway, we sat for a while and waited for Dr. Shah. Once she arrived, they got Pete up, and she told him to take a step with his left foot, as he did, she hit the control button, and his foot went up so he could move forward, it also meant his foot landed flat on the floor at the end of the step-meaning he would have enough balance to move the right foot. By no means was he doing this with no assistance, or really even minimal assistance, but his gait was absolutely night and day different. It looked like a regular walking gain as opposed to a "please don't fall". It was a pretty good thing to see, you gotta know it. Hearing the doctor and the therapists talk, the devise was helping with one of his walking problems but was showing another to exist. There is a long road ahead of us.

They will continue a trial of this during his PT during the next week. If he does well with it, they will work on getting him one he can use at home. This is not like wearing reading glasses, where you get used to them and can't read without them, I was told this is the more you use it, the less you'll need it. So, we'll see if they can get United to pay for it. If not, while the devise is not cheap by any means, it is not so cost prohibitive it can't be handled.

So, now you have a little progress report. I promise to try to be better about posting. Oh, and if you're still reading, give yourself a gold star!