Parkinson's Tremors

Parkinson’s turned me into James Bond’s favorite bartender. All my drinks are shaken not stirred. Sorry, sorry I know PD and tremors are no joke but I couldn’t help myself. Tremors often are one of the earliest and most noticeable signs of PD. They are caused by reduced levels of dopamine due to the loss of dopamine producing cells in the brain.  About 70% of people with PD have a tremor at the time of diagnosis. Researchers define two main types of PD tremor, resting tremors and action tremors, but PWP know that no two of us are alike so there are as many variations as there are people who have the disease. Tremors can be mild or debilitating or anywhere between. Consider yourself lucky if you don’t have them.

Resting tremors are the most common form of tremors associated with PD. They occur when a body part is at rest against gravity, when the muscles are relaxed or still, when you are lying in bed, or when your hands are resting on your lap or at your side. It is inhibited while moving and not present (thankfully) while sleeping.

Action tremors are less common than resting tremors affecting about 25% of PWP at diagnosis and 40% during the course of the disease. Action tremors occur during any type of movement of an affected body part and are triggered by muscle or muscle group contraction. Action tremors can be task specific caused by the movement they accompany. Writing, for example, often causes the hand to shake. 

Resting tremors are often referred to as pill-rolling tremors because they resemble the motion of rolling a small pill between the thumb and index finger. Tremor amplitude decreases with voluntary activity. Stress, of course, makes them worse. All PWP are different but generally tremors start in one hand, then progress  to the arm and foot on the same side of the body, then go to the other side of the body, and may then go to the whole body including the head. Tremors are not the worst PD symptom but they can be bad. They may be mild or strong. They may continually get worse or they may get worse for a period of time  then level off and improve, and sometimes they may stop. Tremors are slightly less common in younger PWP. PD usually progresses more slowly with those that have tremors than those that don’t.

Tremors are treated medically with drugs and Deep Brain Stimulation. DBS passes a small current with high frequency through areas of the brain that block motor function and has a 90% success rate in decreasing or getting rid of Parkinson’s tremors. There is some evidence that stress reduction techniques like yoga, deep breathing and meditation are helpful. Some people get relief by reading or watching TV, and others find that socialization reduces symptoms. Researchers say that activity lessens tremors which seems true except, like all things PD, when it acts contrary and makes me shake more.

Parkinson's And Happiness

Before I had PD I was not what you would call an overly happy person, someone who walks around with a smile on his face singing don’t worry be happy, but I was okay. I’ve changed. It seems hard to believe but even though Parkinson’s is my new normal I am now more or less happy. PD has been with me seven years now and although I keep wishing it would leave, it seems to have found a home in me, settled in for the long run, and doesn’t show any sign of wanting to go away. It is more noticeable and affecting me more this year. My symptoms (tremor, fatigue, balance) are worse. It is harder to accomplish simple daily tasks (bathing and dressing), and some days are pure misery. My comfort zone and world are shrinking. I don’’t want to travel and hesitate to take even short day trips. I am less comfortable being with people who don’t have PD and more comfortable with people who do. And yet, somehow I am okay. I am getting things done, interacting with people, enjoy being alive, and even laugh and smile and have a sense of well being once in a while. We know PD is brutal but could it have helped me become a happier and more positive person?

I am involved with the PD community and know a number of people that have the disease. Even though there is no cure and they are aware that their symptoms are going to get worse they are, in general, no less happy or more depressed than people who don’t have the disease. When we get together one would think that with that much suffering and misery in the room it would be a fairly gloomy gathering but it’s not. We are happy to see each other and be together. There is a lot of laughter and joy and the sense of being part of a special community.

I really don’t know what causes some people to be happy and others not. I do know that there are four primary chemicals in the brain that effect happiness: dopamine, oxytocin, serotonin, and endorphins. You would think people with PD would be miserable due to a lack of dopamine. Instead, while not exactly bubbling over with joy, a number of people with PD have told me they have become a more positive person since getting the disease. At first I thought they were hitting the levodopa a little too hard and getting high from their meds but then I realized that I had become a slightly more positive person as well. 

There is something special about people with Parkinson’s and the PD community. It is not just that we have an in common shared experience that bonds us together. Knowing that a person has PD makes them more interesting to me. I want to know everything about what the disease is doing to them and what they are doing to cope with it. An important factor in fighting PD is being part of an understanding and supportive community. 50% of PWP experience depression as a symptom but they tell me that they are usually okay when with the PD community. Those involved with the PD community seem to be doing better than those facing it alone. I could be having a bad day and when I get together with other PWP my symptoms lessen. Sharing your discomfort with others that understand it seems to lessen pain and defuse it a little. Avoid isolation. Don’t face it alone.

Writing about PD is my attempt to understand and define what is unique and special about Parkinson’s and how to cope with it. Parkinson’s changes us. Taking an active part in PD community informs and strengthens us. Why do I have a sense of well being and that I am part of a special community? Every once in a while when writing about PD or being with other PWP I’ve had glimpses and hints but haven’t found the answer yet. I will let you know when I do. Let me know if you find it first.

Divorcing Parkinson's

Dear Parkinson’s,

Listen Parkinson’s, I’ve been living with you for seven years now and I still don’t understand you. I know that PD is a neurodegenerative brain disorder that affects dopamine producing neurons that transmit signals between the brain and nerve cells but what I am trying to get a grasp on is what you are doing to me physically and emotionally. I really don’t understand. I should, as we have been living together for a long time. Sometimes I am okay being with you and then without warning and for no reason you hit me with a new symptom or a major case of the PD blues. I had a hard time getting dressed yesterday. Today i am exercising and humming a happy tune. Talk about inconsistency.

I talked to my PD friends even though I know we are snowflakes, no two alike and that each of us has a personal PD. They don’t understand either. All we want to know is what each day will be like and how you will progress over time so we can best prepare for the future and be comfortable having you around. But no, you are inconsistent and keep surprising me with new symptoms.

Putting up with you is tough. You were okay when we first met and it was only tremors in my right hand but you changed. You spread the tremors to the rest of my body, made it hard to walk, messed up my posture, and upset my balance. Then you introduced fatigue, anxiety, insomnia and the other non motor symptoms into our relationship and that was too much. And just when I am ready to give up, I have a good day and remember how it used to be when we first met and you weren’t too bad and I thought I could live with you. 

I try to prepare but don’t understand how you decide which symptoms to hit me with for the day. Will it be increased tremors, or really bad balance, or over powering fatigue, or by some miracle surprise will I be okay for the day. Then there is the intensity: small, medium, large, or the lay me out extra large full misery. So I sought professional help but instead of improving, you got progressively worse with time. I have to take drugs just to put up with you and get through the day.

I tried my hardest to live with you but you only got worse. I’ve had enough. I want a divorce. I no longer want you in my life. No more sleepless nights, no more tremors, no more falling, no more stress, no more Parkinson’s. I’m contacting my neurologist to see what my options are. You will be hearing from us.

Sincerely,

Peter

Parkinson's And Depression

Who me depressed? Are you kidding? Why would I be depressed just because I have an incurable disease that makes me feel miserable and is going to get progressively worse with time? What is there to be depressed about?

Medically, depression is defined as a mood disorder characterized by a persistently low mood and a feeling of sadness and loss of interest that lasts longer than two weeks. Additional symptoms such as feeling worthless, weight loss or gain and change of appetite, lethargy or fatigue or loss of energy, inability to concentrate, and thoughts of death or suicide may also be present and help to confirm the diagnosis. 

50% of PWP suffer from depression as compared to 5% of the US population. Additionally, 40% of PWP have an anxiety disorder. The Parkinson’s Foundation states that depression and anxiety taken together has a greater impact on the health of PWP than do the more noticeable physical motor symptoms that define PD.

Depression is so prevalent in PD that doctors now believe that depression may actually be a symptom of PD possibly rooted in the way the disease affects the brain. PD causes changes in areas of the brain that produce dopamine, norepinephrine and serotonin — chemicals that are involved in regulating mood, energy, motivation, appetite and sleep. In fact, the same pathways that create dopamine in the brain also create serotonin which impacts depression. PWP have an imbalance of neurotransmitters (brain chemicals) that regulate mood which is now thought to play a major role in the development of the disease. Researchers believe that many PWP experience depression or anxiety two to five years before physical motor symptoms appear and the diagnosis of PD is apparent. This means that depression is not simply a psychological reaction to the illness. It is a chemical imbalance in the brain and part of the underlying disease process. It's a double whammy. Depression can make PD symptoms worse and PD can intensify depression.  

A comprehensive approach consisting of medication, counseling, exercise and social support is most often recommended to cope with depression. Social isolation and the lack of a supportive social network can intensify depression. Don’t isolate yourself. Become part of the PD community. Other PWP understand what you are going through. Learn all you can about PD and depression so you understand and deal with what it is doing to you. Physical exercise helps. Make plans to do at least one small activity each day. Do not make decisions late at night. Wait for the light of day. Don’t get too high it’s a long way down. Don’t get too low it’s an even longer way up. Attitude is everything. Unlike PD, depression can be cured. Don’t hide it. Talk to your doctor if you need to. Meds and cognitive therapy can help. There is help out there. Get it if you need it.

A Parkinson's Caregiver's Story

Caregivers are an important part of the PD community. Their praise  is not sung enough. The following was written by my friend Amy. Her husband was diagnosed with Parkinson’s in 2013. I asked her to write this because she once told me that she feels privileged to be part of this with Mike.

“Expect the unexpected.” This is the motto of the Experiment in International Living, a program I was part of when I was seventeen and living with a family in Sweden.  As a teenager and young adult, I interpreted this motto as a call to be adventurous, risk-taking, and prepared to welcome new challenges – embrace an unplanned, unpredictable life. It seemed to offer an exciting way to live.

I got married late in life at 43, and became a mom even later at 45.  Allowing myself to settle down and cherish a stable, fairly predictable life was actually quite wonderful.  I found Mike, my husband, a childhood friend.  We had grown up in a very close and safe cooperative community north of New York City. When Mike and I had our daughter, our family of three experienced a lot of fun and happiness, as well as life’s challenges, losses and hard times.  

Mike was diagnosed with Parkinson’s disease six years ago when he was 63. Our daughter was about to graduate from high school.  We both were shocked, frightened and heartbroken.  I knew about Parkinson’s as my father was diagnosed with PD when I was 26. He died when I was 52.

Parkinson’s is a weird illness – a real wild ride.  In our PD community, we say it’s a “snowflake” disease in that no two people experience the illness in exactly the same way.  I  soon discovered that Mike’s symptoms, level of functioning and moods could change from day to day and hour to hour; and my old motto, “expect the unexpected”, came back to me and became my new motto.  I am married to a brave, resilient, at times anxious, depressed or angry man – a PD warrior who is not afraid to ask for help when he needs it and can laugh as hard as he did prior to the diagnosis.  The challenge for me is to do my best to be as helpful and available without enabling him to be so dependent on me that we temporarily slip into the roles of mother and child.

I love to be spontaneous and also like to make plans.  Now, I’m constantly learning to let go of control and accept that, at times, plans will fall apart. We decide to meet friends for dinner and a movie.  We might end up doing both; or just one thing; or Mike is too sick to attend so I go alone; or we cancel.  All have happened.

We plan a trip, and maybe it happens as we had hoped; or Mike joins me but has to spend much time in bed; or he freezes and shuffles and possibly falls requiring that he sit in the transport chair while I push him;  or we cancel the trip; or I go without him and we get friends and family to stay with him and help him as much as he needs while I’m gone.  All have happened.

Here is some of what I have learned and am still learning:

1. Focus as much as possible on being in the present and capturing pleasurable moments as opposed to being torn apart by future possible scenarios, worries and fears.  For a part-time pessimist, worrywart and usual realist, this has been important work for me.  It has allowed me to really enjoy how much Mike and I laugh together, rage at politics together, adore live music, enjoy the beauty of nature and our home full of art, and being with our beloved daughter as well as our family and friends.
2. Accept what is. Research what can possibly be improved or changed, and then be active in bringing them into being.
3. Mike and I are partners.  We agree about encouraging him to do as much as he can for as long as he can. We work to maintain that delicate balance between dependency and independence, separateness and togetherness.
4. Be as patient, forgiving, accepting and honest of both myself and Mike about our feelings, needs and limits. Sometimes I feel sorry for myself. Sometimes I want to run away from the demands, limits and worries that this disease imposes on us. I mourn the loss of how it use to be. I try to accept that this is just part of the process…
5. Voice appreciation, gratitude and love for each other as much as you can.  This is a hard, at times lonely, journey we are each on. We can talk and listen to each other’s experiences, but each of us is alone in how we really feel, and what it is like for each of us.
6. No one, no matter how close they are to you, can fully grasp what the PD experience is like until they are in it.  I wish I had been more patient with, more understanding and supportive of my mom for all those years she dealt with my dad’s PD.
7. I am happy for Mike when he is able to pull it together to be fully present with others when we get together with friends. However, I feel very much alone and sad when we return home and he crashes, exhausted, energy spent, dyskenias running rampant and he is unable to engage with me or even with himself.
8. I do my best to encourage others to ask me or us what we need as opposed to assuming they know what is best for us. 

I am an extrovert, and community has always been important to me. I am beyond grateful that Mike introduced us to the PD community.  He began by attending the Dance for PD class, and came home saying “I found my people.” I later joined him in attending dance class, and this is where we eventually met Peter and several of the others who have written on Peter’s blog. We soon connected with the local PD Active group, which further opened doors to more classes for Mike and new deep friendships for both of us.  I once said in the dance class that I was very thankful for “the most wonderful community we never wanted to be part of.”

Today the sun is shining;  I hear birds chirping and children laughing outside.  Mike is napping downstairs.  Soon I’ll make dinner, turn on some music or MSNBC.  We’ll decide which series to stream for a few hours, take our respective medications, read, snuggle and sleep (hopefully without nightmares).  Tomorrow will be another unpredictable day, and I’ll do my best to navigate this life we’re living — striving for balance between dependence and independence, hardship and joy, frustration and acceptance. There is a lot of suffering out there – some less than ours and some much more. I accept the sunshine and sorrow of my life and always remember that good days are still possible.