Handling a Diagnosis of Tardive Dyskinesia

 

Tardive Dyskinesia (TD) is a condition of involuntary, repetitive movements of the jaw, tongue or other body movements. It frequently is a side effect of the long-term use of antipsychotic drugs used to treat schizophrenia or bipolar disorder. It is almost always permanent. I’ve been told Vitamin E might help a bit.  Benzodiazepines have also been used with mixed results on a short-term basis.

Some examples of these types of involuntary movements include:[3]

  • Grimacing
  • Tongue movements
  • Lip smacking
  • Lip puckering
  • Pursing of the lips
  • Excessive eye blinking

(Wikipedia)

I recently was diagnosed as having TD after the use of Zyprexa. My version is my lower jaw moves from side-to-side, unless I concentrate on not doing it. I quickly revert to this involuntary movement when I’m not aware of it. I recently saw a video of myself (with my family) and sure enough there I was, doing the ‘jaw thing.’ It was very obvious. It was also very embarrassing. (I have the ‘lithium jitters’— where my hands always shake, but TD is different.)

There are a couple of things I might mention:generics7

1) I’ve discovered that there is a real social isolation with this TD stuff. To be doing this in public is “not acceptable.” I have had people come up to me wanting to know what’s my problem. Since I can’t control the movement I just say, “It’s my meds— they affect me this way.” In a way it’s like wearing a neon sign saying, “I’m a fruit cake.” Having a mental illness is stigma enough, but the TD just puts a new edge on it.

2) As a natural introvert the isolation has only deepened. (I avoid crowds and most social engagements.) I guess if the truth be told, I’m uncomfortable when others look at me strangely or whisper to each other. My standard ‘paranoia level’ has taken a new twist. I feel like I’m always compelled to explain. I guess I’m embarrassed when others are embarrassed.

3) I settle myself down in my faith to cope. I know I’m not alone in this– the Lord Jesus is always with me. He holds me tight through all these twists and turns. Since I isolate myself so much, I savor the connection I have with a few friends who have become inured to my condition. Social media helps out— Facebook is a gift.

4) One of the things I try to remember are the issues of selfishness and pride. I keep reminding myself it’s not about me all the time. One of the significant areas mentally ill people deal with is self-absorbed thinking. It seems it comes with the illness.

5) I try to keep a sense of humor everyday. It breaks down the mental pain to tolerable levels. We can take ourselves too seriously sometimes. Be more patient with yourself.

I certainly ask that you remember me in prayer. I’m in ‘uncharted waters’ (it seems) and I sometimes feel all alone with my mental illness and all its tangents. I want good to come out of this. (An instantaneous healing would be o.k. too.)

 

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Being Sick

Potter shaping a ceramic plate on a pottery wheel

Potter shaping a ceramic plate on a pottery wheel

“So Miriam was kept outside the camp for seven days, and the people waited until she was brought back before they traveled again.”

Numbers 12:15

To be numbered among the chronically ill often can mean a transition into frustration. We can not do what we want, we are ‘trapped’ by a disease we never asked for, and held hostage by our minds and bodies. It seems apart, from the management of our symptoms, we have little time to do anything else. We once had a job– a career… and our time was occupied by that. We were accustomed to something more than this illness.

I once was a pastor of a small church here in Homer, Alaska. I also taught Gospels for many years at the Alaska Bible Institute. I loved both. They defined my identity and gave me purpose. I loved helping people and teaching the Word. I strived to be faithful in the ministry. My wife and two children were also significant and all of these things led me to think they would always be there. I was living my dream (in a good way.)

With the sudden onset of a brain tumor, followed up by a diagnosis of Bipolar disorder (BP), I knew I had to step out of the ministry. I simply could not function. My depression grew more profound with the stillborn death of our third child. Things suddenly ground to a stand-still as we tried to process what has happening to us. I guess I just couldn’t understand and more or less just shut down. I spent months in bed, unable to function.

Some people were jewels. Others were mean and uncaring. (I had to learn to take the good with the bad.) I suppose I should have been more forth-coming, but things were so tangled up inside I couldn’t verbalize a thing. The post-op surgery was an ordeal, as I had to learn many things all over again. Years later I ended up on disability; I was unable to work, and no one would hire me. My symptoms were so unpredictable, and things were too erratic. The BP was giving me it’s customary depression, as well as paranoia and hallucinations.

Sometimes, like Miriam, we are quarantined by the Lord for his purposes. The isolation is worse that the pain it seems. We wonder why this is happening, and fabricate lies about our worthiness or God’s goodness. In our isolation things seem polarized to extremes. Our value seems to be ripped apart by our illness. We can feel cursed, or worse.

I have been slow to learn this: God brings good out of the dark. I’m embarrassed by my lack of acquiring this truth.

“We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves.”

2 Corinthians 4:7

This light must shine. The treasure is found in clay vessels. Brokenness only means the treasure is now seen clearly. It’s important to note: treasure loses none of its value by being surrounded by broken clay.

“We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed.”

2 Corinthians 4:8-9

Troubles of various ilk come to us. They are variegated and unplanned. No matter what their nature, God holds his people in place while everything else is falling apart. But there is no magic wand; the pain will probably continue. But for the broken believer, there comes another dimension; a new supernatural layer of grace to bolster our beleaguered faith. We will triumph through this thing, and we will stand– because He makes us stand.

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Jamison and Steel: Interviews on Suicide

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NAMI’s Interviews With Danielle Steel & Kay Jamison

Last year, Steel published His Bright Light, a memoir of her son, Nick Traina, who committed suicide at age 19 after a life-long battle with bipolar disorder (manic depression). More recently, Jamison has published Night Falls Fast: Understanding Suicide, combining research, clinical expertise and personal experience to explore one of the world’s leading causes of death.On February 8, the Senate Appropriations Subcommittee on Labor, Health, Human Resources, Education & Related Agencies will hold a hearing on suicide prevention that will include testimony from best-selling author Danielle Steel and Professor Kay Redfield Jamison, author of several academic and popular books on mental illness.

Interviews with Steel and Jamison have appeared in “Spotlight,” a special supplement to The Advocate, the quarterly publication of the National Alliance for the Mentally Ill (NAMI). Conducted by NAMI executive director Laurie Flynn, they offer a possible preview of Steel and Jamison’s testimony on Tuesday. Excerpts follow below.

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Dr. Kay Jamison

NAMI’s Interview with Kay Jamison
Spotlight (Winter 1999/2000)

NAMI: What do we know about the linkage between suicide and mental illness?

Jamison: The most important thing to know is that 90 to 95 percent of suicides are associated with one of several major psychiatric illnesses: depression, bipolar illness, schizophrenia, drug and alcohol abuse, and personality disorders. These are obviously treatable illnesses. Another thing people don’t think about enough or emphasize enough is that because cancer and heart disease hit older people, they are seen as lethal illnesses. Because the age of onset for mental illnesses is very, very young, people don’t tend to think of mental illnesses as the potentially lethal illnesses they are. It’s important for people to understand that they have an illness to begin with and then that they get good treatment for it.

NAMI: You have spoken specifically of suicide and college students.

Jamison: Yes. Suicide is the second major killer of college aged kids. It’s the second leading killer of young people generally.

NAMI: You also have pointed out that, worldwide, suicide is the second leading killer of women between ages 15 and 45. These statistics are staggering, yet most people don’t seem to be aware of it.

Jamison: Absolutely. Across the world. There are almost two million suicides a year worldwide. I think people just don’t have any sense of the enormity of it. Suicide unfortunately has been so individualized and, because of the early suicide movement in this country, so separated from mental illness. People working in the field of suicide concentrated on existential factors and vague sorts of things, when in fact the underlying science is very clear that they’re associated with a few mental illnesses.

NAMI: Knowing what we do about illness and its treatability allows us to be able to discuss preventing suicide.

Jamison: Right. [U.S. Surgeon General] Dr. David Satcher’s emphasis has been very strong on three fronts. One is public awareness. Secondly, intervention and all that’s involved in making doctors and others more able to ask the kinds of questions needed to uncover mental illness. And then, thirdly, to support the science that’s necessary to study suicide.

NAMI: What else can policy makers and public officials do?

Jamison: I think we have to have public officials talking about it. When you have someone like Jesse Ventura out there saying these outrageous things-I think it’s really beyond the pale-we’ve got to have the president of the United States saying look we’ve got a real epidemic here, and there’s something we can do about it. People are dying from not gaining access to treatment-or from having three days in the hospital, and then going out and dying.

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DANIELLE STEEL

NAMI’s Interview with Danielle Steel
Spotlight (Winter 1999)

NAMI: “His Bright Light” is a very personal story about a very painful subject, the mental illness and death of a child. What did you hope people would learn by sharing your story?

Steel: I hoped first of all that people would come to know my son, and learn what an extraordinary person he was. I wrote the book to honor him, and to share with people what a remarkable person he was, in spite of his illness. I also wrote it to share with people the challenges we faced, so that they feel less alone and less isolated with their pain, in similar situations. I wrote it to give people hope and strength as they follow a similar path to ours.

NAMI: What did you learn from this painful tragedy?

Steel: I’m not sure yet what I learned from the tragedy, except that one can and must survive. But from his life, I learned a great deal about courage and perseverance, and love.

NAMI: Lots of people in America might be facing signs of a mental illness in one of their children. What about Nick’s behavior made you realize that it was more severe than just the normal growing pains of a child?

Steel: Nick was different. Always. His moods were more extreme. I sensed from early on, that despite his many wonderful qualities, there was something very wrong. I knew it in my gut, as I think many parents do.

NAMI: How long did it take for Nick to be diagnosed as manic-depressive and receive treatment for that condition?

Steel: Nick was not clearly diagnosed as manic depressive until he was 16, a good 12 years after we began the pursuit of the causes for his ‘differences’. He received no medication until he was 15, and did not receive the most effective medications until he was 16. A long and very painful wait for all concerned!

NAMI: Prior to knowing of Nick’s manic depression, what did mental illness mean to you? Did you associate stigma with mental illness?

Steel: I don’t think I realized, before Nick, that one could still be functional, or seemingly functional, if mentally ill. I thought of it as something totally incapacitating, and of people who were shut away. I don’t think I realized how intelligent and capable mentally ill people can still be. I’m not sure I did associate a stigma with mental illness. It just seemed like a sickness, and not necessarily a shameful one. I just thought of Nick as sick, whatever it was called, and wanted him to be cured.

NAMI: How did Nick deal with the knowledge that he had a mental illness?

Steel: For a long time, Nick himself was in denial about his illness. And eventually, he accepted it. In the last year, he told people he was manic-depressive. Before that, when he felt ‘normal’ on medications, he believed he was cured. He had a hard time accepting at first that he would be manic-depressive all his life.

NAMI: Are schools able to cope with the mental illness of a child?

Steel: In most cases, I don’t believe they are. It is a huge challenge for all to meet, and certainly hard on the other kids to have one child acting out. We were very lucky, in Nick’s high school years we finally found a wonderful school that understood the problem, accepted him as he was, and was willing to work with him in a framework he could cope with. They were remarkably flexible and creative. But for most schools, it’s asking a lot to expect them to adapt to a mentally ill child.

NAMI: If you could tell a family member who is caring for someone who is mentally ill one thing, what would that be?

Steel: Never give up. Get the best help you can. Keep trying, keep loving, keep giving, keep looking for the right answers, and love, love, love, love. Don’t listen to the words, just listen to your heart.

NAMI: What do you think support groups like NAMI can do for families coping with the mental illness of a loved one?

Steel: I think groups like NAMI can provide support, both emotional and practical—the knowledge that you are not alone. And resources, where to go, who to talk to, what works. You need all the information you can get, and it is just about impossible to do it alone.

NAMI: Stereotyping the mentally ill as violent and dangerous is pervasive in America. How do we change this perception?

Danielle: Information. Obviously there must be some mentally ill people who are violent and/or dangerous. But I suspect that most are not. Nick certainly wasn’t either of those, he was gentle, loving, smart, funny, compassionate, extremely perceptive about people, and very wise. I cannot conceive of Nick as ‘dangerous,’ although ultimately he was a danger to himself. But for the most part, I think the turmoils of the mentally ill are directed within and not without.

NAMI: What do you think the average American should know about mental illness?

Steel: I think most people should know how common it is…I also think people should know how serious it is when it goes untreated. And how potentially lethal it can be. It is vitally important to get good treatment, the right medication, and good support. If you let a bad cold turn into bronchitis and then pneumonia, without medication, it can kill you. If you do not treat serious diabetes, it can kill you. If mental illness goes untreated, it can kill you.

NAMI: We know that having “hope” is important to battling any disease. What hope do you see for people with mental illness?

Steel: I see a huge amount of hope. The medications today can give people whole, happy, productive lives. There are lots and lots of people with mental illness holding down good jobs, even with important careers, happy family lives, and doing great things. It is possible to lead a good and happy life if you are mentally ill. If those who are doing just that would speak up, it would give great hope to all those who are still groping their way along in the dark.

NAMI: What is Nick’s legacy?

Steel: Nick’s legacy is the love we had and have for him, the word we have spread of what a terrific person he was. In his lifetime, he touched countless lives, with his warmth, with his mind, with his music, with his words. Through his experiences, others have and will learn. Through the Nick Traina Foundation, hopefully we can bring help to others, in his name.

 

For more information or assistance, please contact NAMI at: http://www.nami.org/

 

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When Despair Empties You

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“It is through much tribulation that we enter the kingdom of Heaven.”  

Acts 14:22

As a broken believer this happens. I breakdown, my faith is questioned, and I feel all alone. Issues like a simple hot shower and eating something seem impossible. I’m embarrassed to say I once went 34 days with a shower. I laid in bed unable to function. That is the insidious truth about chronic depression, I know it well. God seems far, far away from me. Life doesn’t matter anymore.

There is much I can do before  it gets to this point. And although life seems insurmountable. Clinical depression kills people. It slowly devours “a sound mind.” It cripples before it takes away your life. There is nothing quite like it; people tell you it will pass, and that you’ll see the sun again. But at the time that seems to be the worst advice ever given.

For God has not given us a spirit of fear, but of power and of love and of a sound mind.”

2 Timothy 1:7

Meds help a lot. I take Zoloft and that is a godsend. I never miss a dose. I know I’m not bulletproof. I’ve taken it for several years now. (It’s like insulin for a diabetic).

Afflicted souls are special to God. And that truly comforts me. Sometimes it seems like there is an invisible tether that holds from completely dropping off the edge. When I do pray, it is desperate and brief. More like a quiet scream for help. There are no frills and no eloquence, but I know I’m being heard by Him who guards my soul.

People for the most part, are of little help. I admit that my attitude can be less than stellar. “Unless you have been lost in this section of hell yourself, it’s best if you just shut up.” (I don’t really say this, but I’m tempted to.)

But there are a few that can speak. Almost always these are the ones who have been through some affliction themselves. They have been hurt and they ‘walk with a limp.’ I’m convinced that they can speak in direct proportion to the pain they themselves have suffered. I once woke up to another pastor praying prostrate on my bedroom floor. He didn’t have to do or say anything else. He left without saying some ‘pious’ word to me, what he did was wonderfully done.

“I will trust Him. Whatever, wherever I am, I can never be thrown away. If I am in sickness, my sickness may serve Him; in perplexity, my perplexity may serve Him; if I am in sorrow, my sorrow may serve Him. My sickness, or perplexity, or sorrow may be necessary causes of some great end, which is quite beyond us. He does nothing in vain.”   

John Henry Newman

Take care of yourself. If this isn’t your first major depression, prepare in advance spiritually for the next. Identify those ‘dear-hearts’ who can help you in advance. Keep taking your meds, even if you think your o.k. And speak often with the Lord, and learn to listen to His voice. That “sound mind” is a promise for those who truly need it.

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On Being Loved More Gently, [Disability]

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Some of us struggle with mental or physical illness.  Some people don’t understand us and they walk away.  This really hurts, and so we isolate ourselves even more.  We might feel not only forsaken, but cursed. We may see ourselves as consummate losers. But these things shouldn’t separate us from our Father’s love.  I think He loves “his special needs” children even more, lol.

But we must believe that we our transformation is happening, more and more, into the image of Christ.  We are becoming like him (hence the word, Christlikeness).  This is a long process, but it is happening!  God has given his word.  Don’t give up.  Don’t give up on his plan for you.

SpecialNeeds-300x300I’m seeing lately that spiritual growth and getting older often work hand-in-hand (and why shouldn’t they?)  As we get older, we will start having many different issues.  When your 50 years old, you don’t have the same situations that you had when you were 14 or 30.  Physically we grow and understand things differently, and this works into us spiritually.  This blends or melds together, especially when the Word and Spirit are present.

“Every time I think of you, I give thanks to my God. 4 Whenever I pray, I make my requests for all of you with joy, 5 for you have been my partners in spreading the Good News about Christ from the time you first heard it until now. 6 And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.”

Philippians 1:3-6, NLT

It is my wish for you that you could walk in your own shoes, and not somebody elses. Also that you would know the grace of God intimately. Being disabled means special efforts will often be necessary, but Jesus’ love for your soul will be molded to fit that disability. There will be no wheelchairs or canes, or even ‘seeing-eye dogs’ allowed in heaven. I imagine there will be a considerable pile outside the gates. Glory awaits.

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

Romans 8:18

Amen.

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Ministry & the Mentally Ill

“Turning Your Back,” Russian Folk Art

Religious people love to hide behind religion. They love the rules of religion more than they love Jesus. With practice, the Condemners let rules become more important than the spiritual life. “

— Michael Yaconelli

Mentally ill people are rarely seen in our Churches.  We are pushed into hiding our true identity;  we can come out into the open, but only if we agree to play according to the rules–their rules.  We are expected to censor ourselves, and say proper things at the right time.  Pharisees [who are alive and well] insist on a level of purity that all must maintain. [Hey, I am not picking on anyone, it’s just a generality.]

If I say that I am depressed, paranoid, manic or desperate, I will upset the apple cart and muddle up everything.  “Truth?  You can’t handle the truth?”, [from the movie, “A Few Good Men”.] 

But– if we use our shortcomings as credentials– we have the ability to speak about grace, love and of self-acceptance, with real authority.

Christians with mental illnesses, have been given a gift that we are to share with the Church.  The Holy Spirit has sprinkled us into each fellowship of believers.  He places us who are presently afflicted and suffering into strategic places.

We are “sprinkled” throughout the Body. Our “gifts” are to speak to the Body, spiritually about a lot of things, but especially grace. We are bearers of grace. We’re the audio/visual department of the church.

If our fellowships become religious, it might be because we in our weaknesses, have allowed ourselves to be silenced into submission by the “interpreters” of scripture.  If we don’t like the rules, we are told to go elsewhere.  We are not welcome, they say with a thin smile.

But don’t you see, that is our moment to shine!  Our “unsightly” presence shouts out to the “wonderful” people, proclaiming grace in weakness.  Those who receive us, in a way, receive Him.  Those who turn from us, muffling us, are doing that to Jesus. Frightening, isn’t it?

I would strongly suggest that we take our illnesses into the open. 

That we become transparent before others.  As we do this, we can ‘oh-so-gently’ guide our fellowships into true grace and love.  They look at me and they see Jesus.  And that is our ministry as mentally ill people to the Church.  Our weaknesses are really our strengths.

9″ But He said to me, “My grace is sufficient for you, for power  is perfected in weakness.”  Therefore, I will most gladly boast all the more about my weaknesses, so that Christ’s power may reside in me.” 

10 “So because of Christ,  I am pleased in weaknesses, in insults, in catastrophes, in persecutions, and in pressures. For when I am weak, then I am strong.” 

                               2 Corinthians 12:9-10, NLT

 

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[This is a re-blog of one of our core teachings, originally posted 11/20/2009. I felt it was time to bring out of our musty old closet and set it before you again. I hope that it resounds deep within, and that it encourages those who must mix their discipleship with disability.]

 

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English Pigeons

“I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.”

Psalm 32:8

In April 2002, I was sitting in this cavernous waiting room at King’s Cross in London, England.  I was waiting for a bus to Cambridge, UK.  I sat all alone, and stared at the tiled floor at my feet.  The doctors had warned me not to travel alone, but I had disregarded their restrictions.  I was taking several psych meds and felt somewhat stronger than I had in months.

As I sat there staring at the floor, within my field of vision, came several pigeons.  They were fat little guys, apparently thriving on bread thrown out to them.  Several very large windows were open, and these pigeons seem to have no fear as they took advantage of a meal from bored travelers.  I remember their audacity and resourcefulness as they came up just a couple of feet  from my chair.

Depression had followed me like an old friend all the way from Alaska to England. I had pushed my limits and was completely drained and quite confused.  I was crying out to the Lord, very desperately.  All of a sudden, a pigeon came across the floor and “presented” himself, right square in front of me.  I was amazed that he was crippled, one of his feet was a twisted claw.  He had been profoundly injured in such a way, that he would never be the same.  He was damaged, and yet somehow he survived.

It was like receiving a lightning bolt.  I understood for the first time in a long time, the Father’s love and care over me.  I saw the pigeon, and I saw myself.  It was a moment of a reassuring grace.  In the ‘mega-hustle’ of 13,614,409 people in London, and in the midst of my profound mental crisis, I knew God’s caring touch.  A grace much greater than all my sin and confusion. He was just letting me know that He was close.

Later that day, I found myself walking the streets of a busy Cambridge with its great universities.  I was all by myself, and I had gotten hopelessly lost.  I was terribly manic, and my meds just couldn’t keep the lid on.  I felt people staring at me, I was talking out loud to myself, disheveled and thoroughly confused.  I just kept wandering and talking, for hours.  I desperately needed psychiatric shelter.  But I was all alone. I knew no one at all.

I kept walking past the many universities, and churches.  They were very beautiful, but I was lost.  I then remembered the damaged pigeon, completely oblivious to self pity. I started to call out to the Father out of my confusion.  Within a few minutes I found myself sitting on the top level of a double-decker bus, with the driver aware of my problems who specifically guided me to the place I was staying.  I was being cared for. I think he was an angel sent to my aid.

I have come to realize that this trip to England was not for me to see Big Ben, Parliament or wander the academic centers of Cambridge University.  Rather I was brought there to meet a certain pigeon, who was waiting to meet me, and pass on vital instructions.  He shared things that I need to know.  The history and landmarks were nice, but I’ve forgotten much.  But all I really needed was somehow given.

P.S.  Two things:

  1.  If you can avoid it, don’t travel alone.

  2. Never call pigeons, “rats, with wings.”

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