You Never Know…

You never know how much you depend on a car until you no longer have one. Yesterday, my neurologist advised me to stop driving until my seizures are under control. In order to drive again, I have to be six months seizure free.

Today was the first day going to work, sans car. A friend picked me up for work. She lives a few miles away and my house is literally on her way to work. However, I was on my own to get home.

Public transportation in a rural area is limited. In order for me to ride a bus from work home, I have a bus transfer and a walk of a mile at the end. The first bus takes me downtown, in the opposite direction of home. I then catch another bus that takes me to a road a bit over a mile from my house. It would take a little over an hour. Any combination of bus routes involve a minimum walk of a mile and a half. And will take over an hour to get home. Walking is not a problem. Walking after a day of overstimulation, exhausting.

Today, I figured the time is the same, it will probably have less sensory stimulation walking. I live about 3.5 miles from work. It took an hour to walk. The last 20 minutes, I had a screaming migraine. It was just too much overstimulation after a day at work. Scratch walking home.

I am not upset over the loss of driving. I understand why I can’t. My convenience does not trump safety of myself and others.

I miss the almost total loss of independence this brings. For the next six months, I have to depend on rides from friends or the bus for pretty much everything. That’s hard.

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Meeting the Family

Last weekend, Riley and his trainer came to my house so Riley and his new siblings could meet each other. Heidjchdjaka…..

Dis is Kaliyah. I stoled the fingy dat mommy uzes ta rites an stuff. I hidded unda da cowch. I gets ta tell dis storee. Dat day wez exitun. Me an Bobby knewz sumfing wez happunun. Mommy gotz uz owt uf da cage eerly dat mornun. We plazed wif Brigid an me an Bobby chased in da tonnels. We gotted tweats an Brigid chased Bobby and I pounced on her. She ranned and wented up da cat climer thingie. I climed aftur her an she battud me wif her paw…

Den da door ranged. Dere was a new hooman an a big dog. We metz dogs befor. Sum are mean. Ofers like ta snif an play. Dis dog wez nice. He sniffed but he haz big paws. Bobby and me wez scared sumtimes wen his big pawz jumped at us. We hidded unda da couch and wached him. We sniffed noses again. He wez nice. Me and Bobby liked him.

Stupid ferret. I managed to rescue the iPad. Kaliyah, Bobby, and Riley me to each other. I introduced Bobby first. They sniffed and Bobby gave a lick on the nose. His body language was curious, no afraid. When I put him down, he went nose to nose again, then scampered off to play. He basically went about his business, ignoring Riley, except when Riley tried to puppy pounce. Riley showed absolutely no prey drive or aggression. He just thought the ferret was a fascinating new friend to play with. I brought Kaliyah out and introduced her to Riley. She was curious also. The only times the ferrets showed any concern was when Riley pawed them. Big paws, small ferrets. For Riley’s part, it was an exercise in self control, as he is still puppy enough to want to play!

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Watching Kaliyah

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Meeting Bobby

After the introductions, Riley, his trainer (Krystal), and I went for a walk. Riley was still excited about meeting the ferrets and was not focused on leash manners at first. Even “misbehaving,” he walked without pulling. In a short time, he calmed down and walked like a pro. We practiced on different terrains.

Riley is a fantastic dog and well on the way to becoming an outstanding service dog. Riley was walking calmly next to me when he suddenly decided to walk in front of me and started pacing. Krystal said something about this being different behavior. Within about 5 seconds of Riley doing that, I had a seizure. Krystal told me he immediately braced and watched me. My seizures are partial, focal ones. I lose awareness, my eyes twitch, and I become disoriented when the seizure ends. My balance is off and I can fall.
We decided to return to my house. As we walked up my street, a man was mowing his lawn. Riley repeated his earlier behavior. I had a second seizure. The young dog taught himself to alert to seizures!

When we got home, Krystal and Riley came inside. Riley drank half the water bowl. Thirsty boy. In the interim, Brigid had left her safety perch, hidden on the chairs under the table. She comfortably walked through the house, watching Riley, but unafraid. Riley is familiar with cats and wanted to befriend this cat also. Brigid wasn’t quite ready to meet him up close. However, she is not afraid of him.

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Riley and Brigid Watching Each Other

The introductions were successful.

Riley is already functioning as a service dog when he is with me. His training continues, as he needs to learn to perform several more tasks and polish the ones he already knows. He is also only 7 months old and needs more “seasoning” before beginning his career.

If you can donate to his training fund, please help. Share the campaign!

Riley’s Fund

My Hope

I saw this video first as a commercial on TV for moments.org. The veteran also has a brain injury and faces many of the same problems I have. Her service dog changed her life. My hope is that Riley will one day do the same for me.

Service Dog Story

Paws For Service- Fundraiser for Riley

Riley is doing great in his training. He is ready to take his Canine Good Citizen test. He is working hard on his public access manners.

Last Friday, I visited him and the training team. I started to learn how to do basic trimming and grooming of his coat. We then worked on walking together and practiced the access test. He has to learn me as a handler. Then, connect me with the rest of his task training.

He started to learn a couple of his tasks last month. Right now, he is working on recognizing and responding to auditory overload, bracing, and standing between me and people who are crowding or upsetting me. He demonstrated his progress last Friday.

I was recently diagnosed with a seizure disorder. My friend, Carol, drove me to see Riley last Friday. Riley was practicing responding to my cue for sensory overload. I clamp my hands to my ears. He was not consistently understanding the cue from me, as I am a bit different from his trainer. He’s also in the starting stages of,learning the task. Carol made the suggestion they couple a loud noise with the task. Loud noise means Riley “checks in” with me to see if I am managing. To demonstrate what happens, she suddenly clapped her hands sharply. My hands went to my ears and I stepped backwards. Riley stepped in between me and Carol. Then, he looked up at me. He performed a task in a real situation, without prompting.

That is one of the many challenges of being a service dog. Riley had to choose between two tasks. He did both. However, he will eventually have to know what task to do, when. He will have to make independent decisions about my welfare and what he needs to do. In addition, he can’t become “alpha” in the partnership. He still has to defer leadership to me in most situations. Thus, the long period of training before a dog earns the title “service dog.”

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Adventures in Brain Injury

There should be a theme song that goes along with the title of this post. It would be something adventurous, exciting, with moments that are slow and seem to drag on forever. There are brass, percussion, and strings. Then, with no warning, the music turns into atonal chaos. That’s brain injury. There are times life seems “normal” again. It may be different from before but there are still times of happiness, contentment, laughter, and even disappointment and sadness. Like a “normal” life. Then, without warning, the remaining affects of the injury causes life to derail again. Chaos descends.

I had adjusted, for the most part, to the changes in my life that brain injury brought. Gradually, I started to define my “new” normal- how my life is now. I still challenge myself. However, I accepted that I have some after affects that will not eventually go away. I learn to find ways to navigate around them.

Last week, I found out that I have one more issue. Brain injury:the gift that keeps on giving. I have a seizure disorder. Only 5% of Traumatic Brain Injury patients develop seizures. Usually they develop just after the injury or around a year into recovery. I should be so “lucky” with the lottery numbers! I’m now on medication to control the seizures.

There was a fire drill at work today. At the time, we were having a staffing to discuss a complicated case. I was standing next to a short filing cabinet; one of the ones about 3 feet tall but long. The alarm rang! Blaring, loud, concussive noise. The strobe light starting flashing. I dropped my soda and was crouched down, leaning into the filing cabinet, arms covering my head, with no idea who I was, what was happening, or what I needed to do. One of my coworkers talked to me, took my arm, and led me out of the building. I was incapacitated physically by the noise. I also experienced a few seconds of lost time, where I wasn’t aware of my coworkers at all. At least my coworkers know to look for me if there’s a fire alarm. I’ll needing help getting out. This is another example of how a service dog can help.

Ironically, I didn’t have a seizure then. However, when I was back in my office 15 minutes later, I phased out totally for around a minute. I suppose my brain was re-booting after all the offensive stimulation.

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Ironic Diagnosis

My neurologist ordered a repeat EEG (Electroencephalogram), the test for seizures. He suspected I have been experiencing partial seizure activity. I went in for the test last week. Approximately 5% of head injury patients develop a seizure disorder. Generally, the seizures either start just after the injury or a year later. I experienced at least one seizure-probably two- the first week after the accident.

The test isn’t painful but it is uncomfortable. To begin with, if the test ordered is “sleep deprived,” you have to stay up the night before. A sleep deprived test is more likely to pick up the indicators of seizure activity. The brain is fatigued and irritable. The clinician hooks around 12 wire leads to your head. It’s not painful. The connection is on the surface. The test itself takes about 20 minutes. In the first stage, a white light is flashed at different speeds. The clinician is trying to provoke seizure activity. I imagine this can make the job rather exciting, when someone experiences a full seizure during this part of the test. In the rest of the test, you rest quietly. I felt really sick during the flashing lights part. For those of you familiar with the original Star Trek, it rather reminded me of the episode with a torture apparatus with flashing lights was used.

There are different kinds of seizures. The most familiar is the Grand Mal seizure, where an individual loses consciousness and has uncontrolled muscle contractions. A simple seizure is an uncontrolled muscle movement. It can be just one muscle group; for example a hand. The patient usually doesn’t lose awareness. A complex partial seizure involves more complicated activity and might involve more than one body system or a partial loss of awareness. This seems to be the type of seizures I experience. I lose awareness during mine but may still be standing up, moving, etc. My brain goes “offline.”

Fatigue is the most common after effect of seizures. I wonder if this partly explains my ongoing struggle with always being tired. And why I face plant for unexplained reasons. My neurologist started me on Lamictal. Hopefully, it will control the seizures without massive side effects.

This is a good article about seizures and TBI. It explains seizures at a basic level. Seizures and TBI

At one level, having a concrete diagnosis with test results is a relief. I can finally point at something and say,”Here! I didn’t have seizures before my injury. Now I do. I told you my symptoms weren’t caused by depression… “. Ever since my TBI, it has been a fight with the medical providers to have my symptoms and after effects recognized. I was basically told it I can’t possibly still be having problems. It can be a real challenge to find a medical provider who listens to you and looks for a cause of the problem. My neurologist understands that any TBI can cause life long effects. I was unconscious for an unknown period of time after the accident and had significant cognitive symptoms in the days and weeks following. And unequal pupils. Initially, I was a bit more clear, as the swelling hadn’t started. My initial diagnosis was totally blown by medical providers.

On the other hand, having a seizure disorder is a bit frightening. I know I have a more mild form but it still means my life is different from before the accident. I now have to take anti seizure medication, probably for the rest of my life. It’s a serious diagnosis.

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Riley and I At Training

My service dog, Riley, continues his training. He is growing and making great progress. In addition to his other tasks, he now has to be tested to see if he can learn how to warn of impending seizures. He will be so much help for me to start having a more independent life. I’m currently having a GoFundMe campaign to raise money to help pay for his training. Please go visit the campaign and learn more about Riley. Donate if you can. If you can’t donate, please share. The larger the reach, the more successful the campaign. Thank you so much for your support.
Paws For Service