Saturday, July 10, 2010

Trigeminal neuralgia, parking lots, and wind

Summer is here, making it a great time to prepare for cold weather that promises to arrive a few months from now.

On "handicapped" or accessible parking permits, we see a wheelchair. Yet most people who have these permits don't use a wheelchair. In fact, they may look perfectly healthy. And that's "permissible." After all, most people who have trigeminal neuralgia have been told that they look just fine. But it's not about how we appear to others.

Taking care of one's self sometimes means overlooking the scrutiny of the neighbor, a family member, and the guy in the parking lot who doesn't know us. It means self-advocating. As a certified rehabilitation counselor, I am here to help you find ways to advocate for yourself.

Every state in the U.S. has a unique form (usually found at the tag office) required for applicants of  "handicapped" or accessible parking permits. Most of the applications have a category for a physician to make a selection, saying that the individual has difficulty walking. Don't exclude yourself from this group. If you have trigeminal neuralgia, you have a neurological disorder that can cause a number of issues, including difficulty walking.

Think about this issue: when the wind hits your face and causes electrocution-type pains to slice through it, do you have difficulty walking? One time I asked a gentleman this, and he explained to me that he walks backward through the wind, allowing the back of his head to shield the wind. As he does this, he places another jacket over his face to protect him from the windy blasts. It's not a story that surprised me, but it saddened me. People who have invisible disabilities have rights, plenty of them. Sometimes we just have to fight a little harder to get the things we need.

Walking through a parking lot backwards is dangerous, and so is walking through one with a jacket over one's face. Cars come through parking lots, sometimes at a fast pace. Drivers are distracted with phone calls, text messages, and many other things. Most parking lots have precast concrete bumpers in some of the parking slots. It's easy, if our vision is obstructed, to stumble over them.

Accessible parking helped me get my master's degree. I had to park far from class. I was young and looked healthy, but I wrapped my face up in big scarves and went to class. I parked right outside the class door, making it possible to traverse the path from my vehicle to the building.

Do you have difficulty walking when the wind blows? If you have trigeminal neuralgia, the answer is probably yes. And the pain may be year round because the wind can howl any season.

You may want to talk to your doctor about accessible parking this summer, before your pain escalates and before flu season begins. A good way to approach this might be to make a few notes about what you do to protect yourself as you disembark from your vehicle and make your way across a parking lot to see a doctor, to buy medicine, or to get groceries. Sometimes a phone call to a doctor you have established good communication with will be sufficient. Other times, you may want to make an appointment. And if your physician says "no," ask another one.

Stay safe.

Have you visited my website? Click here.


  1. Great post! So helpful!

    I'm always questioned about why I'm on disability when I walk most mornings (mostly in lots of pain), am thin and healthy looking. Why can't people accept the fact that the invisible handicaps are just as disabling as the visible ones?

    Air conditioning blowing on my face is enough to trigger a TN attack too!

  2. I think it boils down to doubting Thomas' who won't believe until they see it. And if they can't see it... end of story unless it happens to them. Yes, even a ceiling fan can set off the pain. Thanks for stopping by, Donna.

  3. Hi, Kathy. I look forward to visit your blog. I feel relax to come here..
    I cannot walk during pain attack, too. Of course I'm afraid of driving a car because of the unexpecting pain. Also I'm hate of humid season, mostly in lots of pain. Now Japan is rainy season...I hope it finishes as soon as possible.

    Thak you for your Tweet. I'm no more alone!!! Hug.
    Yoko Setoyama

  4. Yoko,

    Thank you for your comment. I'm so glad you stopped by the blog! You are correct: you aren't alone. I know about being unable to drive because of unexpected pain. Take good care of yourself, Yoko. You are in my prayers.

  5. Kathy,
    James and I are so thankful for your Book, Blog and your stand for the supernatural gift of healing that God gave you. Your escape from 'the beast' of TN, as James calls the pain, is so encouraging to both spouses and victims of the horrible prison of pain that trigeminal neuralgia offers.

    Although God chose to remove James' TN pain through science, we have no doubt that He used the affliction to accomplish His purpose and plan for thousands of others. Our ministry began by telling people his remarkable story of 12 debilitating years of pain, only to decide to finally end his life because of no long term hope of a full recovery.

    I now understand why Jobs' wife told him to curse God and die. She was tired of watching his suffering. Thank God, I KNEW and had heard that God had a plan for James. That was the only thing that allowed me to encourage him to hang on and endure the suffering until the answer came.

    For us, Upper Cervical ended his pain. We didn't know that is was NOT A CURE for TN, but instead an opportunity for Health and Wellness to occur for every aspect of the body. James was on Neuortin, Oxycotin and Dilantin; He has NOT TAKEN one drug since 1996. Is that amazing?

    We thank God daily for His plan. You see, His plan evolved because James suffered and did not end his life. Because of that, our book has reached unreachable TN patients and other victims of disease, who now have regained vitality, health and life!

    More later.....we appreciate your compassion and dedication to encourage TN patients!

    Rhonda Tomasi

  6. Donna said it right it is an invisible disease. Kathy, my doctor said no to the handicap tag.
    Your blog encouraged me to pursue.
    Yes, even in the summer and the slightest breeze or ceiling fan can set off the pain. Today here in the Northeast it is colder and windy and agony is really setting in. Neurontin helps sometimes, but not at all on some days.

  7. Roberta, I'm sorry you are still suffering. I am hopeful you will find a more understanding and compassionate physician. I'm saying a prayer for you right now.


  8. I think I may have this. I have to wear scarves even when the weather is warm and the pain can be unbearable.

    1. I am hoping that you will feel better soon.

  9. I have aTN and with it comes unbearable migraines. Your blog is so inspiring. I am currently looking into disability, being in the office under the lights is miserable. My attacks are so sporadic that I never know when one is coming on. The anxiety and stress makes them come more frequently, but how does one live without stress or anxiety. Also I have learned that large crowds are not my friend either. I am currently on 3 different pills and 2 vitamins, they work sometimes but not always. Today is one of those days that it isn't working. I know it will subside, I just hope it is before I have to spend another 3 days in the hospital just to break it.