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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Tag: dystonia

But it's just a headache!

Terri Reinhart

We didn't go to the doctor very often when we were growing up. Unless we needed stitches, a cast, or had strep throat, we pretty much made do with home remedies... or just simply waiting it out.

We didn't go to the doctor for the simple stuff like ear infections or childhood illnesses. An earache meant getting drops of warm vegetable oil in your sore ear. Mumps, measles, or chicken pox meant letting your siblings drink out of your glass so everyone would get sick at the same time. A headache? Lie down with a cold washcloth on your forehead. Rest. It will go away eventually. Stomach flu? Just try and get to the bathroom in time; when we could eat again, we got warm jello water. 

A few weeks ago, my dad was having some pain. "It's okay," he grimaced, "it'll go away in a minute. It always does." When we finally got him to the emergency room, we found out he was having a heart attack. He expected a heart attack would have been more painful and obvious. 

Somehow, I got the message that going to the doctor, the emergency room, or even being in bed sick for days meant I was being lazy. I don't think I was taught this, it was just something I picked up on my own.

In my 20's, I started having migraines. I didn't know they were migraines. They were headaches, albeit rather severe headaches.. that lasted 3 to 4 days. Who goes to the doctor because of headaches? Who stays home from work because of a headache? Still, over the years, I mentioned my headaches to the docs now and then. Some brushed it off, one suggested I take Ibuprofen every 4 hours - indefinitely. One told me I wasn't having migraines. I didn't find the docs very helpful; but then, I wasn't articulating my concerns very well, either. It was just a headache. 

I've learned a lot in recent years. Migraines may be an early indicator of Parkinson's disease. I've found out that a lot of people who have Dystonia have migraines. My three day migraine parties are not unusual. The nausea and sensitivity to light adds to the festivities.  Then, after the major headache is gone, along comes the Migraine Hangover. That's the day when your head isn't pounding anymore and you don't feel like throwing up; your head just sort of aches here and there, and your body feels like it's been rolled down a rocky hill, through a creek, and left overnight to dry.

Some people get an "aura" (seeing lights, smelling something, etc) that tells them a migraine is coming. I get cravings for certain foods, which I will never crave, ever again. Last week, I suddenly just had to have hash browns. I ate a lot of hash browns. I now hate hash browns.

The biggest thing I've learned is that headaches can be a big deal and docs actually take you seriously when you seriously ask for help managing them. There's medication, even some I can take, that will knock out a migraine in progress. Of course, there's the possibility of a "blow-back headache", and I can only safely take the medication so many times per month, but it's something.

I'm getting a little bit better at figuring out when to go to the doctor.. and.. there's no such thing as "just" a headache.



Pain Management without Pain Medication

Terri Reinhart

"Are you sure you don't want me to prescribe some pain medication?” The emergency room doctor looked at me in disbelief. I doubt he often has people refuse this offer.

I was in the hospital last Friday afternoon with severe neck and face pain. It doesn't seem to be anything serious, more than likely a combination of my dystonia, being at the dentist for a check-up, and perhaps a type of migraine that hits in the area of the carotid artery, right behind the ear. There's nothing to do now, but wait to see if it goes away or gets worse, and manage the pain.

I'm a medication wimp. Side effects are me. It's not only medications, either. I envy people who can drink a couple glasses of wine without feeling ill or smoke a joint and get that nice, “ooh, life is good..” sort of feeling. I have a tiny bit of medical marijuana and I get that, “ooh, the room is spinning and I feel like throwing up..” sort of feeling. Prescription meds aren't much better. Past experience with pain meds have led me to expect one of three different responses:

  1. I will puke my guts out until I am severely dehydrated and end up in the E.R., in much worse pain.

  2. My pain will go away, but my breathing is depressed. I'll lie on the couch, not able to move or speak, or sleep, while my breathing becomes shallower and shallower till finally I stop breathing altogether for 30 seconds or so. That's when I suddenly gasp for air in a panic and the process starts all over again...over and over and over.

  3. Once in awhile I get lucky and it works, without causing any puking or breathing problems. I will only try this if I'm at the hospital and being monitored. Otherwise, it's not worth the risk

This means I've had plenty of times when I've had to practice pain management without any medications at all. After this last episode, a friend asked if I would share some of the techniques which have worked for me. I don't guarantee they will work for anyone else. Everyone's systems are unique and there isn't an easy answer, but this is what I do:

For chronic pain and to prevent acute episodes:

  1. Drink water. Unless I'm puking my guts out, I try and drink as much as I can. Being dehydrated makes pain worse.

  2. Yoga. My dystonia can twist me into positions that are not normal for the human body. If I'm already twisting into weird positions consciously, my body doesn't rebel as much with the dystonia.

  3. Exercise. Walking is difficult for me, but dancing is delightful. If I'm sitting and working on my computer, I get up and stretch often.

  4. Laughter. For me, this means being with real people, family and friends, chatting, telling jokes, sharing funny stories, and laughing at my challenges. It also means writing funny stories and sharing them in this journal, and coercing family and friends into reading them.

  5. Massage therapy. Whenever I can afford it. When I can't afford it, I hope to see the “free 5 minute chair massage” sign at the Farmer's market.

  6. Balance. Get out of the house. Do housework. Rest. Don't plan more than I can comfortably do without becoming fatigued. Say no when I need to say no.

Okay, I'll admit it. The last one is impossible for me. I've tried. Well... okay...honestly? I haven't tried. My philosophy has been, “If I do this now, I'll be useless later, but if I don't do this now, I'll feel useless all day.” This attitude can be somewhat good for my soul, but the physical body eventually just has to rebel. When it does, I end up exhausted and with acute pain in some form or another. One challenge is, I don't know how much activity will cause me to become exhausted. It varies.

Techniques for managing acute pain:

  1. Stay away from screens – TV, computer, cell phone, e-reader. When I am not feeling well, looking at screens will make me tense up. My neck and back will become stiff, my dystonia kicks in, and my vision gets blurry. No screens. (As I love to write, this is hard for me, too.)

  2. Drink water and hot tea. Drinking hot liquids helps keep the digestion going. For me, that's essential to pain management.

  3. No sweets and no heavy meals. I stay away from sugar and too many carbs. Overeating, if I have any pain at all, will make me feel very ill.

  4. Hot baths. This is one of the most effective ways for me to relax.

  5. Rest. Rest. Rest. Sleep if possible.

When the pain gets really bad:

  1. Lightly stroking the skin. A massage therapist taught me this and it is how I got through a Cesearean birth without pain medications. Any place will work, it doesn't have to be done where the pain is located. It works better if you don't go in circles (don't ask me why) but just random designs. It also works if someone else does this for me. Some people cannot tolerate this gentle touch, but for most of us, it's a simple way of releasing endorphins to help with pain.

  2. Focus. This is hard to explain and I couldn't find anything written about it. This is what I've developed for myself. More than likely, someone will write to tell me what it is called; I doubt I invented anything new. I'll try to explain...

Lying down, covered warmly, I start with breathing. In yoga, I learned how to breathe in deeply and breathe out, emptying my lungs as completely as I can. It helps to count. Whatever number you count to as you breathe in, add several more numbers to your outbreath, making sure your outbreath is longer than your inbreath. This helps to calm the nervous system. No, I don't have a scientific study to back this up, but I do have a wonky nervous system that agrees with it.

As I breathe, I start to calm myself. Now, where others might tell me to go to a happy place and not think about my pain, I do just the opposite. To do this effectively, I need to know where the pain is coming from. The more I know about the exact process that's going on, the better it works.

When I know where the pain is coming from, I focus on the pain as objectively as possible. I still feel the pain, but I don't feel the panic that often comes with pain and I don't feel the need to take it away. I just contain it. I mentally let it be in whatever part of my body is hurting, and I try to allow the rest of my body to feel okay, unaffected by the pain.

It doesn't work all the time. I toss and turn and try to get comfortable. Often, though, it is when the pain is at its worst that this technique works the best for me.

Make sure you talk to your doctors about any pain you are having. They can tell if the pain you are describing is something which needs to be checked out at the office or emergency room. Then, of course, if you're not as sensitive as I am, the doc may prescribe pain medication. Take it, zone out (at home), and file this list away for another time.

Ooh, life is good!