Shoes……

I got this quote from my friend, and fellow Parkinson’s blogger, Dr. Maria de Leon, who writes about the importance of shoes in the life of a Parkinson’s Diva.  In fact, the logo on her website is a pair of red high heel pumps.  Many of us love our shoes, and hang on to those beloved pairs even though they are collecting dust in our closets.  You know the ones.  The sparkly high heels that you wore to your daughter’s wedding.  Those amazing strappy sandals, with the skinny 4-inch spiked heels that looked so great with your favorite dress. And those Manolos, Jimmy Choos, Pradas or Christian Louboutins

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Bye bye heels

that we spent a fortune on but can no longer walk in.  They sure made us look fabulous!  We just kicked them off under the table at dinner to get some relief and put them back on when we had to get up.

But the reality is that Parkinson’s and age have made those shoes more difficult to walk in.  So the time has finally come to part with those shoes.  And finally recognize the fact that we do have to make some changes in our lives because we just are not 25 anymore.  So the shoes are going to a resale shop, to be replaced by stylish 2-inch heels that don’t help make me look taller, but at least I can walk in them, safely and comfortably.

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Hello comfort!

Remember the stores that sold Orthopedic shoes?  All those ugly black lace-up shoes that our great-grandmothers wore.  They don’t exist anymore, thankfully.  They have been replaced by stores selling “comfort shoes” and some of them actually look good.  Because styles have changed so much, it is rare that we need to wear “dressy” shoes anyway.  A cute pair of ballet flats will go with just about anything.

So I bid a tearful goodbye to those shoes I can no longer wear and look forward to shopping for some fabulous, comfortable new shoes.  After all, a girl must look great in her shoes, no matter what height the heels are!

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

A Need to Help Others:  One Woman’s Story

Sunday I had the pleasure of meeting with a group of women with Parkinson’s in Glendale, a suburb of Los Angeles.  Tricia Low had pulled together the group to discuss issues related to Women with PD.  Tricia is amazing.  Her father had Young Onset Parkinson’s so she knew when she started having symptoms at a young age, that she, too, had PD.

The first thing Trish noticed was that her handwriting started to look like her father’s.  She was a labor and delivery nurse and about a year before she was diagnosed she realized that couldn’t read her own handwriting in patients charts.  Her father was diagnosed in the 70’s and the one thing she remembers from that time is that it affected men more than women.  So she never thought that she would get PD.  Looking back, she thinks her symptoms probably started a year earlier, but she ignored them.

First she went to a local neurologist.  He ordered bloodwork and her results were “wacky”. They realized that she probably had Leukemia in addition to Parkinson’s.  The first doctor was not very positive.  He talked to her husband, not to her, in spite of the fact that she was a nurse.  He did not give her any information, so she began to look elsewhere.

She first went to Huntington Hospital, which was filled with “old people with white hair”.  There was no one there her age. She went to hear a doctor there who was speaking about Parkinson’s  and she went up to him and explained that the first doctor put her on Requip and she was havinga bad reaction to it.  The first doctor said she would get used to it.  The second doctor disagreed, so she changed doctors.  He took her off the Requip and made some other changes.

In 2007 she retired from nursing after 25 years. She then became a coordinator for the Parkinson’s Association in the Valley.  The doctor who was working with her found it difficult to maintain a personal relationship with her and be her doctor.  So again she looked for another doctor.   She eventually got an appointment to see Dr. Jeff Bronstein at UCLA and has been happy ever since.

It took about 5 long years to finally get to the right doctor, which has made a huge difference.  

Trish says there are  4 things we must do to cope with PD:

  1. Keep a positive attitude
  2. Exercise every day
  3. Advocate for yourself
  4. Always check for the latest information on the internet

She is always trying new things.  She goes dancing, she boxes to get out the aggression.  She has been inspired by Dr. Maria de Leon’s book to become a Parkinson’s Diva. She prays.  She is a religious person and prayer is very important for her.  Also, her grandfather told her that if you get dressed every day, put your make up on and look your best you will feel better.  Its a great way to keep going.  “I always tell people that I am a pretty package, but a mess inside.”

What makes her story so unique?  She did not expect to be fighting two different diseases at the same time.  She has had 4 DBS implants because she broke the first set!  She fell off a step-ladder and snapped the wires in half.  She set a precident for patients after her because the doctors changed where they anchored the wires so that it won’t happen to other people.

Her advice to the newly diagnosed:  each time you lose something that you can’t reverse, take the time to grieve about it to get the negative out of you.  Exercise every day 30 minutes.  If you believe in God, or some other higher power, get close to them.

Finally, Trish says “what  keeps me fighting is I still have a  purpose to my life. One of my passions is  ‘Caring for people and helping  them along the way.’  So I went from Nursing Moms’& Babies to Parents & Preemies to helping adults with PD.  I want to help them. But having a PURPOSE is high on my list of surviving both my diseases. This truly the end of my
story.” 

   DJ Crawford (Trish’s Mom), Maryanne Moses, Trish Low, Zahra Ehssani, Sharon Krischer and Deanna Ahmed

At a loss

I seem to be losing things on a regular basis.  And not just my mind.  I keep leaving things at restaurants, at the gym.  Most of the time I am able to retrieve the lost article.  A scarf, a sweatshirt.  Other things are just gone.  I lost my Fitbit somewhere in Washington DC last week.  I will never see it again.  I miss the alarms on the Fitbit to take my meds.  And now I sometimes forget to take those too.

But the latest mishap occurred at the spa at my gym.   My back was bothering me after the long flight home, so I scheduled a massage.  It was wonderful.  I had put my rings and watch in the pocket of the spa robe and reminded myself to take them out when I got dressed later.  I was so relaxed after the massage, that I put on my  watch and then forgot about the rest.  I returned the robe to the spa and went home.  Later that evening I realized that I wasn’t wearing my necklace (also in the pocket of the robe)  I called the gym early the next morning and went later on a search mission, checking the pockets of the robes that had come back from the laundry.  No luck.  No, I am not the only one that this has happened to.  They said that most of the time, things show up within a couple of days.  But so far, nothing.

It is beginning to seem like I need a checklist to make sure that I have all of my belongings when I leave any place.  This was never a problem before.  At least not this frequently.  Is it the Parkinson’s?  Aging?  Actually, this reminds me of a story my friend and fellow Parkie,  Dr. Maria de Leon wrote about in her book Parkinson’s Diva.  Her story occurs after a massage too.

After a massage, she got dressed quickly and then  “As I was walking towards the Ladies Room, I felt a chill, which I promptly ignored;  after all it was winter and extremely cold outside.  As I passed through the corridor, I noticed all eyes were on me, which I ignored and continued to the bathroom.  I did wonder briefly why everyone seemed so fascinated by me today.  Upon entering the bathroom, I realized the reason.  I had forgotten to put on my blouse!  I was parading about wearing only my lacy red bran and leather jacket, which happened to be wide open.”

Maybe the moral of this story is that we should either forget the massage or find that we leave our brain on the massage table and suffer the consequences.  Now where did I put my keys??????

$_35

Responses to Getting Past Denial

[animated-france-flag-image-0019This was written before the awful news from Paris today.  Our hearts go out to the families of all those affected by this senseless hatred.]

Today is a big day.  Thanks to all of you, Twitchy Woman has passed 1000 viewers.  What started last March with a posting called In the Beginning that had just 15 views in the first month, Twitchy Woman now has at least 60 followers from many different countries.  If you have not officially signed up to follow please do so by clicking on the Follow button to the right so that you won’t miss out on future postings.  The most viewed post was Things I Never Thought I Would Do, a short post about signing up for Boxing classes, followed by Seeking Self-Efficacy and Livin’ La Levadopa.

Since my goal was to create a forum for readers to share their experiences about living with Parkinson’s Disease, I would like to share a couple of responses from the last post “Getting Past Denial”

Myrna writes:

“When I was first diagnosed three and a half years ago, I fell into a pit of self-pity and depression that I couldn’t remember ever feeling before. I began to read everything about the illness that I could get my hands on, and I stumbled into a support group for Parkinson’s that I attended the very first week after I was diagnosed and it was a lifesaver.  Strangers gave me information, invited me to conferences on Parkinson’s, and befriended me in telephone conversations about the illness that helped me ever so much.   I read Michael J. Fox’s three books along with other authors too, and they were immeasurably helpful.   But denial is powerful and seductive and pops up in my heart and mind from time to time, despite the clarity of the illness to myself and others. Because so far the illness is progressing slowly, I find myself thinking, ‘I couldn’t really have Parkinson’s.’  Yet I know I have it without a doubt.”

From PD in Arizona:

“My Diagnosis…The New Me

It was early 2014 and we celebrated surviving the stress and sleepless nights of an extensive condo remodel in Scottsdale. Because we love the area and the wonderful condo enhancement, it prompted us to return home to WI, sell our home and relocate to AZ. In March ‘14 we noticed a strange ‘twitch’ in my left hand. My husband Brad and I both just instinctively knew it was a red flag. We never said the words, but unbeknownst to one another, we secretly Googled and read the symptoms: Oh NO…the ‘P’ word (Parkinson’s)!!??

I was diagnosed in June ’14 and it was the diagnosis I dreaded, but expected due to the classic tremors. My initial fear was that I’ll become an awful burden to my husband and apologized to him for my disease and ‘ruining’ our lives. We shed some tears and shared our honest feelings. I was numb and scared. How did this happen…to me??” My husband encouraged me to inform my siblings, but because both live in different states it was via “that phone call.” We then shared with other family members and our close friends. I heard nothing but positive, supportive feedback from all.

Although PD is more than daunting, very early on I let go and accepted my disease. It’s always been my nature to remain positive. Brad told me, ‘It’s the new you!’ I’ve embraced it by remaining educated and have infused quite the sense of humor. I often crack jokes about my twitches (both hands and a leg). I can’t hide it, so what other choice to I have? After all, everybody has something! And as I look at others around me I am so grateful I don’t have a brain tumor (like the one that took my dear friend) or losing my eyesight like another close friend. But don’t get me wrong. I’ve had a few bad days too like the time my husband found me closet crying, “I’ll never be normal again.” After conversation and hugs I pick myself up and move on.

Truly, I have so much to be thankful for: a loving supportive husband, an outpouring of caring family and friends who keep me in their prayers. I love that my best Rx is exercise; I’ve become involved with several clinical studies; and adore my network at the Muhammad Ali Parkinson Center. I walked my first PD 5K last year with my team and raised $2600 for the MAPC outreach programs, (which I – like Twitchy Women, also accidently posted on FB…one of the best things I’ve done.) I’m sure you guessed by now – my circle is quite aware that I have PD and I wear it like a badge of courage. They know that I’m a fighter and doing great. But, every single day…I still optimistically pray for that life-changing medical discovery or cure! We are getting close and it WILL happen!”

I would love to hear from more of you. 

Please don’t hesitate to get in touch with me at twitchywoman18@gmail.com to suggest other topics, or submit something to be posted.  As we say in Boxing for PD, we are all Fighters together in the fight against Parkinson’s.

Other interesting news from the web:

In case you missed it, here is a link to the terrific piece about Rock Steady Boxing that aired on CBS Sunday Morning:  Fighting back against Parkinson’s in the Ring

Using wearables to tackle Parkinson’s

Baseball Legend Kirk Gibson Has Parkinson’s Disease, Says It is Not a Death Sentence

And finally, an article sent to me about a breakthrough in crossing the blood-brain-barrier that has implications for future treatments for PD.  Canadian doctor first to break blood-brain-barrier.  And a related article:  Canadian Doctors Perform Breakthrough Blood-Brain Barrier Surgery Using Focused Ultrasound.