Is There Anything Good About Living With Parkinson’s? These Women Say Yes!

I’m the fittest I’ve ever been, healthiest, started a coaching business, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses.  Jackie P.

Several years ago, on a Thanksgiving blog post, I wrote about things to be thankful for with PD.   Many of the “things to be thankful for” were lighthearted.  But some readers did not get it.  One person responded “how could anything good come from this terrible disease”.  For me, a positive attitude has helped me get through the past 9 years while living with Parkinson’s.

Recently, on a PD Facebook page, someone asked for members of the group to share something positive that they have done, learned or discovered since they were diagnosed with PD.  For many people, it may be difficult to see anything positive about the diagnosis, such as that person I mentioned.  However, the response to her question was amazing.

There were many wonderful, honest answers, some of which I will share with you.  Very few answers were the typical “shake and bake” answers.  The readers dug deep and there were some common threads throughout.

Probably the most important thing is the friendships that have been made because of Parkinson’s.   Having friends who understand your life with PD is priceless.  These are people who understand how you are feeling, without even having to ask.

Coming in a close second is being more aware of what is important in their lives and making changes appropriately.  That may mean spending more time with grandchildren, doing things on their bucket list, setting boundaries and learning to say “no”.

Finally,  quite a few mentioned having more confidence in many ways, to speak up when with friends, at work, in public places.  They are able to challenge themselves and try new things.

I think that having Parkinson’s allows us to see the world differently.  It also gives us the chance to reinvent ourselves, over and over again, as the disease progresses.  Many of us are doing things now that we never would have imagined doing. Why not try that boxing class and see what the buzz is all about?  You have a sudden urge to play an instrument?  Go ahead and do it.  It is good for your brain.  Same for learning a new language.  Learning new skills can help reconnect some of the neural pathways in your brain that have been damaged by PD.  The most interesting thing to me is that so many of us have found new interests, often showing creativity in the arts where there was none before.  Is it the added dopamine that we are taking? Or the lack of dopamine?

Because many of us are no longer working, we now have more time to do those things we have always wanted to do.  Mr. Twitchy and I have been traveling a lot, mostly because we have the time, but more importantly, a future with PD is so uncertain that we want to get in as much adventure as we can now, while we can enjoy it to the fullest.

So here are some of the answers in response to the question.  Do you see yourself in any of these?  Can you think of other good things that have happened because you have Parkinson’s?

  • I have met so many wonderful people, challenged myself and achieved things I would never have done before, I enjoy and appreciate the little things in life so much more, I live in the moment and know that life can still be good! 😀
  • I would say it’s a wake-up call and forces one to face facts about their life and take stock. Time to make changes and let go of some things and nurture others. Also since exercise is the one real medicine that can change the course of this, a lot of the future is in our control. Get moving! 🚴‍♀️
  • Appreciate each second and reaching out to Face Book friends; priceless
  • I no longer moan about emptying the dishwasher; just appreciate the fact that I still can.
  • I know I’ve become more empathetic, sympathetic, more caring, more appreciative, more loving, to name a few. You don’t get it, until you get it!
  • I have become more patient with other people and have been grateful when they are patient with me. I started a support group and joined Rock Steady boxing🥊 and through those two groups have developed deep friendships and gotten to know people that I can’t imagine my life without. I also found out what a caring man my husband is. I am also learning to depend more on God.
  • For myself I go to the Delay the Disease exercise class and have met 6 wonderful ladies and we stay after class and talk about everything good or bad in our lives. We also go out to lunch and a movie every 2 weeks. I feel so much better about my life since going to this class.
  •  We don’t get as many wrinkles since we don’t have all the facial movements and  if someone makes you mad, you can spill something on them and just blame it on your Parkinson’s..LOL!!
  • I am a retired RN. Trust me loss of sense of smell can be a blessing in a hospital setting. Not a blessing when baking brownies.
  • It has pushed me to not be so shy in talking in front of others as 4 years ago I started a PD support group in our Community as there was none And so I thought, Yes I can try this! So glad I did! Also My art has become a real blessing!
  • Learned be in the now and to get the most out of every experience.
  • I’ve learned to set boundaries with people in my life, not take on too much, take care of myself so that I can be the best mom and wife I can be. I’ve also learned to love myself more and honor where I am every day. And I don’t sweat the small stuff anymore!
  • I have learned to FINALLY and unequivocally stop putting up with other people’s BS, no matter who they are, even if it means banning them from my life. Ain’t nobody got time for that crap!!  😀
  • Learned not to take anything for granted..be confident and for the first time in my life love myself instead of not liking myself.
  •  I created a cartoon to deal with this journey or situation. I’m striving to be a positive deviant. Hope to share some of the cartoons.
  • Finally getting the proper diagnosis was such a relief for me and my husband. I started to think I was crazy. It also reminds me to make as many happy memories with my family, while I can.
  • It has shown me that I am a fighter. Stronger than I thought. I figured I can curl up in a ball and check out of life, or stand up and fight it. I’ve put my energy into now helping other veterans with illnesses that also developed post combat deployment. For me, it’s a healthy way to redirect my anger at the disease and the military and turn it into a positive. But don’t get me wrong, I still have crappy days…just a bit fewer😊  
  • Telling my story and the complete reinvention of myself!
    Image may contain: Allie Toepperwein, smiling
    Allie Toepperwein

    Speaking up for myself and not to sweat the little things. Allie T. – see photo

  • I’ve learned not to put off tomorrow, what I can do today! Traveling and making memories with my family and friends. Learning not to worry about tomorrow, just take care of today. Strength doesn’t just happen, you choose it!! You ladies are proof! ❤️
  • First, all the wonderful people I met at the World Parkinson Congress in Portland in 2016 as well as those in my local support group. Secondly, creating a new life in retirement as I will launch a PD website and blog this summer.
  •  Learned to text with my left hand! 😀
  •  Oops, forgot! Became an athlete (astonishing to this couch potato)😀   ⛹🏻‍♀️ 
  • Having everyone tell me I am an inspiration to them. Before I was diagnosed I was average and now I’m a warrior. It’s a strange feeling but it fuels my fire. I am stronger than I ever realized.   
  •  Where do I start? 6 years of living and doing so many things I would not have done. I’m the fittest I’ve ever been, healthiest, started a coaching business, become part of several charity fund raisers, made new and positive friends, live in the moment, nothing for granted, more time for others. Above all staying positive every day, just so happy to be able to stop and smell the roses. 🌹🌹🌹
  • I’ve learnt how to do radio shows from my home and that has lead to doing a community radio training course and now I have a co-announcer spot on the oldest grooviest avant- guard community fm station in Australia.
    https://www.mixcloud.com/…/radioshow-dj-madonna-from…/

An American Ninja PD Warrior

 

Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.   Jimmy Choi

I am not a fan of Reality TV.  The closest I came was when my daughter was designing clothes and we watched Project Runway together for several years.  At some point, we both became bored with it and stopped watching.  Every season, every episode followed the same formula.  I have watched Top Chef a few times, mostly on airplanes when there is nothing else of interest, and guess what, it followed the same exact formula, just substituting chefs for fashion designers.   Nothing original in these shows.   Is there a difference between “The Voice” and “America’s Got Talent”?  I could not tell you, except that Simon Cowell seems to be everywhere.

Tonite, I watched American Ninja Warrior (ANW) for the first time because of Jimmy Choi.  If not for him, I probably would have avoided it completely.  I am sure that so many others with Parkinson’s watched for the first time, too.  Jimmy Choi’s second appearance on ANW was a reason for us to come together and celebrate.Image may contain: 1 person, outdoor

So who is Jimmy Choi?  An inspiring father of two who was diagnosed with Parkinson’s Disease at age 27.  One day he came across a magazine article about a person with PD who was running a marathon.  That article motivated Jimmy, who by that time had gained significant weight and was walking with a cane, to run a 5K race.  Then a 10K race, 1/2 marathon and eventually full marathons.  It literally changed his life.  He lost weight and his PD symptoms became less severe.  Jimmy became an inspiring model of the positive benefits of exercise for a person with PD.  All of this led him to become a spokesperson for the Michael J Fox Foundation.

Tonight, he is appearing for the second time on American Ninja Warrior in an effort to spotlight the need for a cure for Parkinson’s.  Last season he made it to the regional trials in Kansas City, but fell in the middle of the course and could not complete it.  Jimmy was a fan favorite, and was brought back by ANW to try again this year.

We watched, cheering him on through the first two obstacles, watching his tremor become more visible as he became more stressed by the tasks at hand.  At the end of the third obstacle, it became clear that his tremor and weakend grasp were going to win this time.  As he said “Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.”  Jimmy fell into the water as he tried so hard to reach that last ring.  We felt like we were falling into the water with him.

The thing that most impressed me was how hard Jimmy worked, inspite of having PD, to get to this point.  He had a mission – to stop making excuses and take control of his life when things were not going well.  As he reached eached milestone, 5k, 10k, etc, he set new goals.  He was not content with staying in one place.  He had to keep working harder and harder, eventually becoming our American Ninja PD Warrior.

Jimmy did not fail last night.   He inspired so many others watching him to get moving, to improve their lives while living with Parkinson’s.  And for that, we thank you Jimmy.

 

 

Time for a change

The last few weeks have flown by.  As I wrote last week, a dear friend passed away after a very brief (5 weeks) illness that left us stunned and numb.  Mr. Twitchy and I got home from visiting her in Arizona on Monday, and left again on Thursday for a wedding in Richmond, VA, and then to Chicago on Sunday to visit our grandchildren there.  Home in LA the following Thursday and thankfully had the chance to hug our one-month old granddaughter as soon as we arrived.  That was definitely just what the we needed since we were off to Phoenix again on Saturday for the memorial service on Sunday.  Looking forward to being home all summer, and staying off of airplanes.

Trying to keep it all together has been a challenge.  Wacky schedules. On and off planes and long drives.  Not enough sleep or exercise.  Meals, good and bad, and not necessarily nutritious.  This is not a good thing for anyone, much less those of us with chronic illnesses.   We are both exhausted.  So of course, my tremor has come back at inopportune moments.   Fortunately that is the worst of my symptoms, but the fact that it has come back again  to some degree is very disconcerting.  I was hoping that I could continue doing well for years.  I have to get back on track with exercise, which seems to bring more benefit than anything else.

When speaking to my therapist last month about the return of some symptoms after 41/2 blissful years on Sinimet, I said I felt like I was falling off a cliff.  He described it differently, that it has actually been a slow change, but suddenly enough of a change to be noticeable.  Kind of like when the PD symptoms first showed up 10 years ago. Whatever it is, I don’t like it.

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Don’t fall off the cliff!

So it is time to do something about it.  Fortunately, several other big commitments have come to an end and I no longer have those stressors.  I need to look at my diet and make positive changes, increase my exercise – both the amount and intensity, and find ways to relax that do not include playing games on my phone.  I have done it before, so I can do it again.   Maybe I will even try to be a PD Warrior!  Anyone want to join me?

We should be thankful for what we DO have

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.”   — Marcus Aurelius

It has been a tough week.  Mr. Twitchy and I lost a dear friend.  Younger than us.  Vibrant. Active. Beautiful.  Smart.  Talented.  Multi-talented.

Just two months ago, we saw her perform the lead role in a play in the Phoenix area that she also produced and directed.  She was awesome.  At the time, we noticed she had a little cough, but so do we all from time to time.  A few weeks later she started feeling some pain in her stomach, and was having moderate problems breathing.  Her doctor did her blood work and, while not perfect, there was nothing alarming.  She was scheduled to see him again in about a month.

Then she and her husband, a friend of almost 40 years, took a trip to California.  We were supposed to see them but they had to cancel.  Her abdominal pains and breathing issues had become so severe that they cut their trip short and went back to her doctor.  He put her in the hospital immediately.  Within days she was diagnosed with a particularly nasty and aggressive form of lymphoma.  In another 10 or so days, the lymphoma had won.  She went on hospice care this past Monday and passed away Wednesday morning – about 4 weeks from feeling mostly normal to being gone.

For some of us Parkies, our disease is truly disabling and life altering.  For others of us – myself included – the disease is mostly just an annoyance.  But whatever our individual level, it can be easy to fall into the woe-is-me trap, because we know we will never be fully “normal.”   We just have to be better and stronger than that.  We must focus on the quality of life we still have and can enjoy, rather than focusing on our regrets of what we no longer have.

Regular readers will remember that I have previously written that it is ok to have the occasional pity-party and cry if you want to over the portions of our selves that we have lost.  Just don’t make it a habit. We have to pick ourselves up and return to fighting as hard as we can to maintain as much quality of life as we can.

As much as anything, that is what this week’s loss has snapped so clearly back into focus.  It should not take the loss of a loved one to remind us that, while we deal with our limitations and while we still hope for a cure, we can never stop the fight to continue to live lives that are as fulfilling – and as joy-filled – as possible.

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How much time do you really spend going to doctors?

Experience says to make your appointment so you’re the first one on the schedule in the morning or the first after their lunch hour.

Tom Sheppard

Do you ever feel like all you do is go to doctor’s appointments?  Feel like a drug addict as you take meds all day long ?   Make sure you are getting your daily dose of exercise? Sometimes it seems that there is no time left in your days to do anything else.

The other day I read a blog post on the Davis Phinney Foundation website by Tom Sheppard about making the most of your visits to your doctor.  Tom does a wonderful job outlining 5 steps you can take maximize your 15 minutes with your doctor.   As I read his list of doctors appointments in one year, I started to think about how much time I spend on doctors appointments and self-care.  You can easily fill your days with unwanted tasks, all in the pursuit of living well with PD.

I knew I was seeing a lot of doctors, but when I actually looked at my calendar, I realized that I had more appointments than I thought I did. To sum up, in 2017 I saw

  1. 25 doctors
  2. 36 appointments
  3. 9 Physical Therapy appointments,
  4. 2 procedures
  5. 2 MRI’s,  and other miscellaneous appointments.

We also traveled a lot, for a total of 17 weeks.  Which means that I saw at least one doctor a week when I was home.  It seems a bit excessive, doesn’t it?

Self care also includes exercise, which is essential, averaging an hour a day.  In addition, we need to make sure that we have all of the  medications that we take throughout the day, keep up with our health insurance claims and more.  Record keeping is also an essential part of self care.  The bottom line it that we spend a lot of time managing our own care.  You must be an advocate for yourself to get the care you need.  If you don’t have someone to help you, it is easy to become overwhelmed.

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On a different topic, I don’t normally like to endorse products on my blog.  But after a friend fell and ended up in the emergency room and no one there was familiar with her PD meds, I both decided it was time to get a medical ID bracelet.  I found a great selection of fashionable ID bracelets on a website called Lauren’s Hope.  I get a lot of compliments on my new “bracelet”.   Check out their website by clicking on the photo here:

Medical ID Bracelet