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.

Parkinson's Versus Parkinsonism

If you have it you have it but what exactly is it that you have. Snowflakes, no two alike, all different. Is Parkinson’s one disease or many and what is the difference between Parkinson’s and Parkinsonism?

Parkinson’s disease is a neurodegenerative brain disorder that affects dopamine producing neurons in the area of the brain called the substantia nigra. Dopamine is a neurotransmitter, a chemical that transmits signals between brain and nerve cells. It is partially responsible for making controlled movements in the body. Symptoms usually develop slowly over years and may differ from one person to another. The main physical symptoms are tremors, stiffness, slow movement, balance problems, and postural instability. A PWP may also experience a wide range of non-motor symptoms such as depression, fatigue, sleep disorders, mood disorders, sexual dysfunction, constipation, loss of smell, gastric problems, cognitive changes, and on and on. Symptoms usually develop slowly over a number of years and often don’t appear until 80% of your dopamine producing neurons are gone. You may have PD for years without knowing it.

Parkinsonism means looks like Parkinson’s. Parkinsonism refers to a group of neurological disorders, not all of which have been clearly defined or named, that cause movement problems similar to PD. A person who has Parkinsonism will also have another underlying disorder that causes additional neurological symptoms such as dementia. Dementia with Lewy Bodies is second only to Alzheimer’s as the most common cause of dementia in the elderly.

Several Parkinsonism symptoms are similar to PD symptoms: flexed posture, slow movement, stiffness and rigidity, small steps without arm swing, and problems with balance. It is called atypical Parkinson’s because it differs from PD in a few ways: there is often no tremor, both sides of the body are usually affected equally, levodopa and other PD meds and DBS may not work. People with Parkinsonism not only have problems producing dopamine but also have damaged or destroyed receptor cells that do not respond to dopamine. With Parkinson’s the dopamine producing neurons are depleted. With Parkinsonism both dopamine producing and receptor cells are damaged. Parkinsonism develops quickly while PD is usually slower although PD progresses faster the older you are. Parkinsonism treatment is determined by the plus disease.

There is no definitive test to detect Parkinson’s disease or Parkinsonism. A DatScan doesn’t differentiate because Parkinsonism has a loss of dopamine as does PD. So if Parkinson’s and Parkinsonism look, smell, and taste alike how do you tell them apart? Doctors say that they depend on a thorough medical history and a number of different movement tests but that is not completely true. The real test is if you respond positively to a dopamine drug it is diagnosed as PD, if not it is diagnosed as Parkinsonism because your receptors cells are damaged as well. 

What do you have? If you find this confusing you are not alone. Parkinson’s is often confused with Parkinsonism and they are sometimes misdiagnosed. One study estimated that doctors fail to diagnose or misdiagnose PD and Parkinsonism 35% of the time. What we do know is that a regular daily exercise program benefits both PD and Parkinsonism and may help slow the progression of the disease. Exercise is also important for maintaining muscle tone, strength, flexibility, and overall health. Both PD and Parkinsonism have no cure so doctors try to treat the symptoms that most affect each person’s quality of life. The diagnosis and treatment may need to be revised over time based on speed of disease progression, response to medications and other factors.

Parkinson's Subtypes

Snowflakes. That’s what we are. Parkinson’s snowflakes. No two people with PD alike. We know it and medical research has finally accepted what every person with Parkinson’s knows. The disease is unique to each of us. We each have our own set of symptoms, we progress at different rates and in different ways, and we respond differently to meds and treatments. The disease itself is a chameleon, changing and different every day. Each morning when I wake up I discover my symptoms for that day. Will it be tremors or fatigue, balance or dystonia, anxiety or … the list goes on. What will be will be. Then just when I think I have the day figured out and under control my symptoms change. What is going on here? The answer, Parkinson’s is not one disease, it is many, or really a disease with many different subtypes.

Researchers now believe that PD is not a single disease as has been previously thought and therefore treated with similar treatment for all, basically either Sinemet (levodopa), an agonist, or DBS. It is a disease with many different subtypes and should be treated as such. Think of it like cancer with its many subtypes based on genetic, biological and molecular differences needing customized medical treatment depending on the specific molecular subtype of the cancer.

"The time has come to ask what we should be doing differently” says Alberto Espay, MD, Department of Neurology at the University of Cincinnati College of Medicine and director of the Gardner Family Center for Parkinson’s Disease and Movement Disorders. "Medical science has made a global investment of $23 billion in therapies with the promise to slow down the progression of Parkinson's disease, and the 17 completed phase III clinical trials have yielded little more than disappointment. We need to ask whether the growing number of failed trials might be explained by our single-target and single-disease approach to drug development.”

We are entering the age of personalized precision medicine. That not everyones PD symptoms are the same and not everyone responds to the same therapies leads researchers to believe that there are many PD types or subsets that can best be benefitted by different therapies. A subtype is defined by a cluster of PWP that have the same molecular subtype of disease. The goal is to define and understand the molecular nature of each subtype and then develop a customized precision medicine approach that is rooted in systems biology to target each subtype. "The diagnosis of Parkinson's disease will be complete only when a biomarker profiling is capable of identifying the molecular subtypes of disease and suggest a disease-modifying treatment to apply.”

Seeing Parkinson's as a single disorder that involves dopamine-neuron degeneration helped develop treatments for symptoms such as tremor, balance, and rigidity that affect most PWP but did not help slow, modify, or cure the disease. Sub-typing the disease according to the presence of specific biomarkers would allow for the development and administration of personalized precision medicine based on subtype and the specific symptoms and molecular features of the disease. “Our patients can be divided into subtypes based on genetic, biological and molecular abnormalities. As a result, they will respond differently to different therapies" says Espay.
Sometimes thinking has to change to solve a problem. Common sense and experience tell us that Parkinson’s comes in different shapes and sizes and has many faces. Medical science now agrees and believes that customized precision medical therapy based on the biomarkers of each PD subtype is the future. Hopefully this acknowledgement will help find the way to prevent and cure the disease. May it come speedily and in our day.