Giving Thanks Once Again

 

Yes, it’s that time of year again.  As we move into the holiday season, it is a good time to look back on the past year and reflect on the things that we can be thankful for.   I know that for many people with Parkinson’s Disease and other chronic diseases, it is often difficult to find anything good in our lives.  However, if we start by looking at the small things, we may see that there is much to be thankful for.

I saw this morning that Parkinson’s Life, from the UK, just reposted my blogpost from 3 years ago, about 10 things to be grateful for on Thanksgiving.  So if they could use it again, I can.  I reposted this 2 years ago with some changes.  So here it is again, with a few more changes of course, because life has changed in the last 3 years.

10.   Getting by on little sleep gives us much more time to spend playing  games on our iPads in the middle of the night, while we are deluding ourselves into thinking that these games may actually help our brain cells regenerate.  I have cut back on the games in the middle of the night, but sleep still eludes me.  The latest research is showing that some of these brain games actually do help with memory.  

Writing this blog is just one of my OCD behaviors.

9.  We can blame our Obsessive/Compulsive behaviors (see #10) on our medications and the non-Parkies will believe us.  Writing this blog is just one of my OCD behaviors.  And because of this, I have begun writing letters to the editor and to others to express my opinion.  And some have even been published.   I have become much more vocal about many things.

8.  Waking up at 5:00 am doesn’t seem so early anymore.   But why am I always late to my 8:30 yoga class? (See #10. Still playing those stupid games on my iPad)   Still waking up too early, but I get to walk my dog at dawn and enjoy the sunrise.  And then I play those stupid games….. Still can’t seem to get to yoga on time, but we had another grandchild this year and I often talk to her mother as I am getting ready to leave.   Besides, facetime with the grandchildren is much more important than being on time anywhere.

7.  I can do things with my left hand now that I would not have been able to do if that damn tremor in my right hand didn’t act up when I am trying to do something like eating, writing, brushing my teeth……you fill in the blanks.  Fortunately Sinimet has been very effective for me and I am right-handed again.  Yeah!  Another thing to be thankful for. Sinimet is still my saviour!!!

6.  Living with PD has taught me to be more pro-active about my health.  I keep up with the latest research and always go to my doctor with a list of questions and concerns.  This is probably the most important thing that I have learned in the last few years.   My internist jokes that I know more about PD than he does.

5.  All of the new friends that I have made who also have PD.  We can laugh and cry together about things that non-Parkies would never understand.  Last January I started a group for women with PD in the Los Angeles area.  As we have gotten to know each other, friendships have blossomed.  We really do have a special bond because of PD. This really is a special bond.  We found each other because of PD, and we are there to support each other cope with PD and other issues.  More importantly, we also get to celebrate many good things together.

4.   Fortunately I have a slowly progressing form of PD, which is controlled by meds.  Better living through Chemistry is my mantra.  And my progression continues to be very slow.  And for that I am very thankful.  The progression is still slow.  I was diagnosed about 10 years ago, and I am very thankful and grateful that I really haven’t had to change much in my life because of Parkinson’s.

3.  Laughing with PD.  When all else fails, I can always blame stupid things I do on that !?@$#  tremor.  Enough said…..  

2.  Loving with PD means cherishing the life my husband and I have together and making adjustments as we need to when that @$#% Tremor gets in the way again.  Our third grandchild was born in July, adding to the joy in our family.  We are truly blessed.  My husband, my daughters and their families give me the greatest joy.  Our fourth grandchild was born this year, and I am most thankful that I can still sit on the floor and play with all of our grandchildren.

1.  Living with PD has enabled me to reach out to others like you, hopefully making all of our lives just a little bit better.  I thank all of you for your support over the last year and I hope that we will continue the dialogue for many years to come.  Thank you!   Your ongoing support of this blog has been a giant dopamine boost for me.  Looking forward to sharing my thoughts with you again in the coming year.

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One last thank you:   Thanks to all of you, Twitchy Woman was listed first in Everyday Health’s 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive  and received recognition for the  third year in a row from Feedspot, ranked #30 in their top 50 Parkinson’s blogs.

 

The California Parkinson’s Disease Registry and other things

First, I want to thank all of you who expressed concern after my blog post last week.  It was a very stressful week which definitely had an effect on how I felt.  I saw my Movement Disorders Specialist on Thursday and she assured me that downloadI am doing ok, I just need to get more sleep and reduce my stress levels.  She suggested meditation, which I have tried before, but never seemed to get into it.  I will try again and hopefully will be more successful.

The California Parkinson’s Disease Registry

Beginning July 1, 2018, a new California Parkinson’s Disease Registry (CPDR) will be implemented.   The California Health and Safety Code (HSC) 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinson’s disease patients to report each case of Parkinson’s disease to California Department of Public Health.   It will be a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinson’s disease.

From the CPDR website:  “Surprisingly, little is known about how Parkinson’s disease is distributed among different population groups and whether the patterns of disease are changing over time.  California’s large and diverse population makes it ideal for providing important information about this disease.  CPDR will expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.”

Why do we need Parkinson’s Registries?

When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. According to the Parkinson’s Foundation, this information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease  Currently, the National Institute of Health (NIH) has no firm numbers for the incidence of PD in the United States, which has been estimated to be about 500,000- 600,000.  The last major PD prevalence study was completed 40 years ago in 1978.  Because the risk for PD rises with age, the number of people with Parkinson’s is expected to increase dramatically as the Baby Boomer population ages,  The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

What the Registry does NOT do:

  • Disclose individual patient information
  • Report you to the DMV
  • Jeopardize your current or future medical care

A quick search on the internet showed that only a few other states currently have Parkinson’s Disease Registries, including Nebraska, Utah and Washington.   More states need to create PD Registries soon, so that they can plan for the increase in services and resources needed for treating PD as the population ages.  If your state does not have a registry, contact the Michael J Fox Foundation or the Parkinson’s Foundation to find out about lobbying your state legislators to create one.

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There are a growing number of best Parkinson’s Diseases blog lists popping up on the internet.  The latest one is  from Everyday Health, an online Health magazine.  The list consists of 10 blogs that they call “truthful and inspiring.”  I am proud to be one of the ten and congratulate the other bloggers chosen.   There are many very good blogs out there, so if your favorite is not on this list, it may be on another.

My Life With Parkinson’s Disease: It’s Complicated

This was written by Lisa Cone, one of the women who attended the Women & PD Initiative with me. It was published in Everyday Health last week.
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Lisa Cone

Life is complicated, right? As I write this, I am in my early fifties, newly single, recently moved for the fourth time in two years, and in the midst of coping with my beloved dog’s cancer diagnosis. Yes, you could say life feels complicated — as it so often does for women who are balancing career, relationships, family, and aging parents.

Ready for another complication? I am living with young onset Parkinson’s disease (PD). After my diagnosis seven years ago, I quickly learned what many people with a chronic disease already know — managing Parkinson’s adds another layer of complexity to life.

In life with Parkinson’s, it quickly became apparent to me that, in addition to my full-time job, I now had a second one — CEO of my own health care. Imagine managing an internist; a neurologist; physical, speech and occupational therapists; the occasional orthopedist; a chiropractor; an acupuncturist; a pharmacist; an ob-gyn; a neuropsychologist; a psychologist or counselor and … phew!

Not to mention the complicated medication schedules. I set multiple alarms every day to make sure I take my 15 or so pills on time and keep my symptoms at bay.

I was handling these complications pretty well. But then life threw two more at me … the loss of my career (I gave up my job to go on disability due to Parkinson’s disease) and the end of my marriage, all within a three-year period.

At that point, life felt too complicated. Losing my professional identity while adjusting to the burden of living without a “built-in” Parkinson’s
disease caregiver — it was a lot to handle. Alongside peers without Parkinson’s, I felt isolated. Who can understand what it’s like to balance this type of life — the work and effort and time it takes to simply manage my disease?

Then, two months ago, I met 25 other amazing women who also live with Parkinson’s. From the very first hour we met, I realized I wasn’t alone in this complicated life.

We met through a wonderful volunteer opportunity, the Parkinson’s Disease Foundation (PDF) Women and PD Initiative. Immediately, I heard stories very similar to mine, many even more complicated — stories of divorce after diagnosis, stories of childbirth and raising children with this disease, stories of fighting to retain careers and professional identities, stories of struggling, like me, to manage the disease well, sometimes with a partner, sometimes without.
Over and over again, from almost everyone, I heard the same refrain — in general, we as women are accustomed to being the caregiver, not the person who needs one. We’re managing our own PD and probably caring for children, parents, spouses, partners, and friends, too.

Our Action Plans for Life With Parkinson’s

I felt understood by the Women and PD Initiative group. During our three days together, we learned from talented medical professionals and scientists that despite the fact that Parkinson’s is slightly more common in men, in fact, women’s lives can be a bit more complicated. Women with Parkinson’s experience unique challenges related to care, research, and support.

Because women tend to be primary caregivers to children or parents, sometimes we do not (or cannot) prioritize our own care. For example, women with Parkinson’s are less likely than men to see a specialist who can provide the best care. Women with Parkinson’s are also less likely to seek out critical preventive care (for non-Parkinson’s conditions) when compared to women in underserved communities or living in poverty. My immediate reaction was, of course! Do we really have time or energy for that mammogram or flu shot? Our lives with PD are already complicated enough!

We weren’t just given this information, we were asked and empowered to do something about it. On the last day together, each of us wrote her own action plan, for how we will take what we learned back into our communities and how we will use our time and talents to improve the lives of other women with Parkinson’s disease. I know that together, we can make an impact.

Because life is complicated for all women, and life with Parkinson’s disease amplifies those complications. But it can be simpler when we support each other.

We hope you’ll join us by visiting the   Women and PD Initiative page today.
Lisa Cone, of Denver, CO, is a retired health care executive and an advocate with the Parkinson’s Disease Foundation Women and PD Initiative.

Follow her on Twitter @LisaNCone.