For the newly diagnosed

 Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.

One of the most satisfying things that I have done has been leading a support group for women with Parkinson’s.  We started meeting almost a year ago, beginning with a group of 13 that has grown steadily throughout the year.  Occasionally I have interviewed women at our meetings to get a more in-depth picture of their story instead of having a “gripe session”.  I have found that telling your personal narrative is very powerful, both for the person telling their story and for the audience.  By going more in depth, issues are often raised that would not normally come out.  It is interesting to see the “light bulb” go off when someone else identifies with something in the narrative.  This reinforces the fact that we are not alone in this journey with Parkinson’s.  Although each of us has a different trajectory there are many commonalities that bring us together.  Here is the story of a woman who was just diagnosed a few months ago.

Jane is an editor,  whose symptoms did not begin with a tremor, unlike most of the women present at the meeting.  She was diagnosed in September after going from doctor to doctor to find out what was wrong.  She had a bout of sciatica two years ago which was followed by dizziness.  She felt she was moving slowly and with increasing difficulty.  She went to many different doctors including a neurologist, cardiologist, audiologist and an ayervedic practitioner, and was put through many different tests, which all came back normal.  One doctor suggested that it might be PD, but there was nothing definitive enough so he dismissed the idea.   Finally a naturopath in San Diego recommended an EMG which is a neuromuscular test.  The results were abnormal, so Jane then sought a second opinion with a neuro-muscular specialist.

It took three months to get into a specialist.  In the meantime she had bunion surgery, which was necessary, but only made it harder to figure out what was wrong.  She felt confused and adrift.  She was distressed that she couldn’t move fluidly. She also noticed her handwriting was getting smaller, movement in bed was more difficult and movements involved with cooking  such as cutting and stirring were more challenging.

When she finally saw the new neurologist, he said he thought she had Parkinson’s.  By this time she had been doing some research on the internet and suspected that was the problem.  So when he dropped the P-bomb, she felt she was somewhat prepared for it.  She had a DaTScan which confirmed the diagnosis in September.  The movement disorders specialist that she was referred to was not the right doctor for her.  She felt the doctor was not interested in what she had to say.  She said “yes, you have PD” and then proceeded to give her instructions without listening to Jane.  She told her to exercise for an hour a day, 6 days a week.  As Jane said, she could barely move and felt that the doctor set the bar too high for her at that time.  She was very upset and felt overwhelmed.  The doctor gave her a Neupro patch and sent her on her way.

Jane went back to work.  The Neupro didn’t work at all.  She finally told the people at work, who were very supportive.  The interesting thing was that the younger people were much more empathetic than the older people who had a different view of PD.   Two days after her diagnosis, a friend referred her to an oncologist in the Bay Area who was diagnosed 20 years ago and is successful and thriving with Parkinson’s.  The conversation she had with him gave her hope and it was the most helpful thing for her.  Meeting someone with the disease who had gone on to have a successful thriving life became her beacon.  It changed her entire outlook.

She was referred to our support group by a friend of a friend.  At the last meeting she talked to several women who gave her the name of another doctor, whom she made an appointment with.  The doctor changed her meds, referred her to someone for LSVT which is a speech therapy method for training your voice to be louder, and she feels that she is finally getting the right care that she needs.  Working full time is much easier now that she is feeling better.

Her recommendations for the newly diagnosed:

  1. The doctors should have an informational pamphlet to hand out with frequently asked questions and a list of local services for people with Parkinson’s
  2. Get a second opinion if you are not happy with your doctor.
  3. Find someone else with PD you can talk to.  A buddy who has had Parkinson’s longer   than you, who can answer questions, be a shoulder to cry on and just be there for you.

There are some resources available now.  Two of them are  Parkinson’s Diagnosis Questions from the Michael J Fox Foundation and For the Newly Diagnosed from the Parkinson’s Disease Foundation.  Both of these had input from people living with Parkinson’s, which is very important.   We should encourage our doctors to hand them out to newly diagnosed patients as a resource.  Some of us in the room were given no information when we were first diagnosed.   There are so many questions and we did not know where to turn to for answers.  There are also many local resources that should be compiled in a list to give to the newly diagnosed.  And finally, we talked about setting up a network of Parkinson’s Buddies to help the newly diagnosed.  After all, no one should go through this journey alone.

Some recommended reading for the newly diagnosed:

These are some of my personal favorites.  There are a lot of books out there, with many touting magical cures.  Please be aware of this when looking for a book about Parkinson’s.  There is no magic cure, but there are definitely strategies for living better with PD.

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palferman

Always Looking Up: The Adventures of an Incurable Optimist by Michael J Fox

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition by Dr. Michael Okun

And for women:  Parkinson’s Diva by Dr. Maria de Leon

Book Review: Brain Storms

IMG_0152-1I have been listening to books on Audible for a while now, usually when I am walking or driving.  Few have kept my interest like Jon Palfreman’s new book Brain Storms, The Race to Unlock the Mysteries of Parkinson’s Disease.  Unlike other audiobooks, I rarely had to back track to find out what I missed while distracted by something else.  The book was engaging, informative and written in language that a reader with no medical background could understand.

Palferman was diagnosed with Parkinson’s at about the same time that I was and at about the same age. He also seems to have had a similar trajectory in the progress of the disease.  He is a medical science journalist, and in that role, he oftened covered scientific discoveries leading to treatments and cures of chronic diseases.  Thirty years ago he produced a documentary film for Nova, The Case of the Frozen Addict, about drug addicts who had developed Parkinson’s like symptoms as a result of bad street drugs.   He is also a professor of journalism at the University of Oregon.  His diagnosis, like mine, initially led to denial, secrecy, depression and isolation.  He was determined to hide the disease for as long as possible.   I can’t imagine anyone shouting to the world that he has just had been diagnosed with Parkinson’s Disease.  After all, the image of Parkinson’s conjurs up an elderly person, shuffling with a stooped back, dementia and an obvious tremor.  This is not a disease anyone looks forward to having since we can only treat the symptoms.  There is not yet a cure or even a guaranteed treatment to slow down the progression of the disease.

Through the book, Palfreman confronts that image and turns it upside down.  He discusses the sea change that occurred when  Michael J Fox set up his foundation to find a cure now.  He interviews Parkies who have made it theirs life’s mission to confront the disease and live with it on their terms.  One example includes dancer Patricia Quinn, who developed a dance program to counteract her symptoms and continues to live well many years later.  He has also interviewed others who have deteriorated rapidly and even goes so far as to project what his future will bring as a result.

Palferman also talks abut the fascinating history of the disease, beginning with descriptions from the ancient Greeks, leading up to James Parkinson’s famous essay on the Shaking Palsy nearly 200 years ago.  He talks about how treatments were developed, and even chronicles the descendents of a family in a small village in Italy who were essential in helping to discover genetic markers for PD.  Because the book was just published, he goes into great detail on the latest research about repurposing drugs for other diseases that have been somewhat successful in reversing PD in limited trials.  This is exciting news that has been talked about all summer.  Because these drugs have already been FDA approved for other diseases, the approval process is shortened significantly, if researchers can get enough patients to conduct Phase III trials.

He ends the book with a bright future for those of us with PD as a result of the flurry of discoveries made in the last few years about PD and treatments for slowing down and ultimately reversing the disease.

And finally, this is a very personal story about living with Parkinson’s disease and how a chronic disease will change a person’s life forever.    That change can be positive, which is something I have heard from so many people with Parkinson’s.  Once we get throught the denial, we can move forward and live our lives fully.