Relying on Four Legs

I think all service dog handlers have heard it.  We hear it from our friends.  We hear it from our family.  We hear it from strangers.  “Do you HAVE to bring him?” “Can you put him in the other room just until everyone leaves?” “You do NOT bring a dog into a place that has food.”  “Can you leave him at home, just this once?”  The list is endless, and no handler escapes it.  The response from the service dog handler is often short and is accompanied by a “Go to Hell” look that could kill everyone in the room if only that ability existed.  While looking back, we know it all stems from a lack of understanding.  People see our dogs as different, or embarrassing.  They know we will stand out, as do we, and they don’t want the attention our dogs draw when in a place that is not pet friendly.  What they don’t understand is that our dogs are why we can go out, why we can function and attend that gathering, why we can do anything that is normal.  We’ve also all given the above explanation, and it doesn’t seem to help, so I’ve going to describe what happened just last night.

Everyone that is familiar with me knows I have Harley.  He’s been part of me for quite a while now.  Harley is eleven years old now, so his successor is in the process of being trained to one day step up and fill his paws.  (I will never say take his place because no dog ever can take Harley’s place).  For now, she gives Harley a break.  Makeda has an amazing strong ability to alert.  She is also shockingly accurate. The ability to alert to neurological disabilities such as Seizures, Narcolepsy, and Syncope is not one that can be trained, but one the dog has to have the ability to do.  Makeda can and does do all three.

Now, for last night.  It was a little after 2am.  I was lying in bed, catching up on some DVR, and trying to convince my body it wanted to go to sleep.  It was not hearing me.  Harley was sound asleep in the living room, and Makeda comes in the bedroom.  She stands on her hind legs and puts her front legs across my chest like she’s holding me down.  This is how she alerts when I’m lying down.  Tim hears me fussing at her to get down.  I even told her, “I’m fine.”  He comes in the bedroom asks me how I’m feeling, and I said, “I’m fine.  I think she just wants attention.”  He came back with, “Yeah, you’ve said that before.”  We get Makeda down, and not three minutes later she’s back up, doing the same thing, but using more pressure to hold me down.  She also is focused on my left hand.  I have Complex Regional Pain Syndrome in my left hand and wrist.  It currently only acts up during, and just after, a seizure.  It is not at all uncommon for Makeda or Harley to focus on my left hand during an alert.  At this point I know she is serious.  This is a behavior she ONLY does during an alert.  She has never done a false alert.  I know better than to try to get up, so I call Tim in from the other room.  He sees what’s going on and gets me my meds.  Makeda watches me taking my meds, and gets off me, but stays right with me, sitting, and does not relax for approximately 15 minutes.  After 15 minutes, she relaxes, and goes and lays down on her bed.  I did not seize last night.

I know, with no doubt, that the only reason I did not seize last night is Makeda’s alert.  There is currently no technology that exists that can do what Makeda and Harley do.  Sometimes I can feel it coming on, but by then it’s too late. I’m going to seize, and the best thing I can do is “brace” for it.  Sometimes Tim can see “tells” that its going to happen, but, again, by that point, it’s too late to prevent it.  Every seizure does damage to my brain.  Every seizure wipes me out for the next three days.  In addition to my seizures, I have to deal with syncope and Narcolepsy with Cataplexy.  My dogs also alert to those events as well.  With all three, if I’m standing, I’m in serious danger of hitting my head on the way down or when I hit the floor.  Just as it is with seizures, there is no technology that exists that can do what Harley and Makeda do.  While I often have “tells” with them, you have to know me extremely well to see it as they are subtle, and its too late, I’m going down, and very quickly.

Events like last night are not uncommon at all.  Normally, they happen several days a week.  I have triggers like stress and changes in the barometric pressure that will make it more likely to occur.  Summer is my least stable time of year, and fall my most stable, but at no point am I immune.  On no day can I say with any certainty that I’m not going to have an episode.  I can literally go from feeling fine, laughing and joking, to down in a matter of seconds.   So, in order to keep myself safe, in order to be able to go out to dinner, meet with friends, have friends over, or do anything that is “normal”, anything that most people take for granted, I rely on four legs.  Earlier I described Harley as being “part of me,” and he very much is an extension of me, like a body part.  With time, Makeda will also become part of me.  Every service dog team, even with wildly different disabilities, is the same in this part.  Our dogs are a piece of us.  Without them, we are not safe.  Without them, we can not function at any level near normal.  We can live our lives because we rely on a set (or two) of four legs.

Dysautonomia: The Red Headed Stepchild

Unless you have been living in a cave, you know about the ALS Cold Water Challenge that has gone viral. I have ranted about it on Facebook, and that is not my intention here, rather to explain why it bothers me so much.

The Cold Water Challenge started as a way to raise money for charity…ANY charity, not just ALS. But, the one for ALS is the one that went viral. Before I go any further, I do not take anything away from ALS. It is a horrible, fatal disease that needs research, better treatment, and a cure. I’m not arguing against that at all.

It was more that it was the straw that broke the camels back that sent me on my tirade. Who doesn’t know that ALS exists? You may not know what it stands for. You may not know exactly what it does or what it is like to live with it, but you know of it. Doctors do not question the diagnosis, or tell you the diagnosis isn’t real. For many, doing the ALS challenge was because everyone else was doing it. It was “cool”. They couldn’t not do it. This follows many other social medial campaigns. For example, not that long ago, someone would post a status meant to get a response such as, “I just used my boobs to get out of a parking ticket,” if you liked or commented on the status, you received a message that told you it was part of a breast cancer awareness campaign, and you had to choose from a list of equally attention seeking statuses and keep it going. Again, who doesn’t know about breast cancer? How does posting a provocative status bring attention to anything? I will give the ALS cold water challenge this, in doing it, at least you said why, and a donation was meant to follow.

Now, why it bothers me… When I tell someone outside of the medical community or the support groups that I have Dysautonomia, I get the puppy dog head tilt. This is even true of doctors. Among my doctors (and I have a huge medical team), the only one (other than my specialist that only treats Dysautonomia), that I didn’t have to educate was my gastro doctor, and I was shocked that she knew what it was and how it effect the GI track, special measures for tests, and all that doctors SHOULD know, but most don’t. The issue is bad that in a support group, it is the norm to hear from patients that their doctor doesn’t believe the condition is real, much like doctors didn’t believe Fibromyalgia was real in the 1990s. Just the other day a Dysautonomiac who works in the ER was speaking to a doctor who was trained near where one of the top Dysautonomia specialist’s practice is, so she asked the ER doctor if he knew Dr. Grubb. His response? “Yes, I know Dr. Grubb and his made up disease that he wastes all his time with.” Unfortunately, that is not an uncommon response. Then there’s the fact that Dysautonomia isn’t rare at all. It’s rarely understood. It’s rarely diagnosed, but it isn’t rare. The average length of time between onset of initial symptoms and diagnosis is 10 years. There are many people out there today suffering from this condition and not getting any answers. 80% of all Dysautonomiacs are incorrectly diagnosed with an anxiety disorder first. This is because Dysautonomia will cause the fight or flight reflex to trigger, causing anxiety. Once you are diagnosed with a psychiatric condition of any kind, getting medical help for a physiological condition that has yet to be properly diagnosed gets harder. Dysautonomia also has the same effect on the quality of life as chronic heart failure. So, this isn’t something that is just an annoyance to live with. There is no cure. There is not actual treatment for the cause. At best, there is symptom management if you can find the right combination of meds that the body can tolerate. Very few reach symptom management to the point of being able to obtain anything resembling a normal quality of life, and that is only after diagnosis. Most of us guinea pig on meds, trying to find the ones with the least bad side effects, and do life style changes as best to our ability, and never find anything resemble a normal quality of life.

What does that have to do with the ALS Cold Water Challenge? There is an official Dysautonomia Cold Water Dare. Almost no one is doing it. I, like most Dysautonomiacs, can’t physically do it because of the symptoms it would cause. I did, however, challenge the people on my Facebook page that I had seen post a cold water dare video. That was 20 people. That led to a long conversation with someone from my childhood about Dysautonomia. I have also seen 2 people post videos (well, one video, and one in the drought area who posted about it and did a donation), and one person I didn’t challenge did one for both ALS and Dysautonomia after my rant. That was over a week ago. At first, I thought maybe my friends would prove me wrong. Maybe the thought that Dysautonomia is the red headed stepchild that no one cares about was wrong. Maybe, just maybe, people did care, and we would get some awareness. I have yet to see that though. I still have hope, but its dwindling.

I hope you can see why this is aggravating. The conditions getting all the awareness campaigns are not conditions that really need awareness (research, better treatments, and a cure, yes). But, here is this condition that people don’t seem to care about, or care spreading awareness about, until they are diagnosed with it. At this point, there are ZERO research studies into a cure. There are two into just understanding the condition.