Never Give Up

Beach Bikes
Photo by Sherri Woodbridge

When a large group of people with Parkinson’s was asked to give advice to others who were recently diagnosed with the disease, the overwhelming response of over 200 responses was “Exercise! Keep moving!” But that wasn’t all. There were many other advisements freely given, but what struck me was, it’s easy to give advice, but how does one follow through? How does a comment like “Live your life” help someone? Sometimes you have to explain or show the person with Parkinson’s disease what “Live your life” looks like. And it won’t look the same for someone else.

How do you…

  • Live your life? One day at a time. Sometimes one moment at a time, without focusing on the ‘what-ifs’. Focusing on your fears or the concerns that PD can create, takes your focus off the present. And the present is where the living occurs. So, if you’re still mobile, get that dog to take you for a walk and if you’re not, put some upbeat music on and read something positive.
  • Educate yourself? Everyone ‘googles’ but that can be a scary start to gathering information on Parkinson’s disease. Start with specific websites like the Michael J. Fox Foundation, which (in my opinion) is overall one of the best.
  • Find a support group? Either locally or on the internet. There are several on Facebook which are ‘closed’ meaning they don’t allow people without PD in and it’s closed to ‘viewers’, meaning you have to be an accepted member to see what’s posted. Type in ‘Parkinson’s disease’ in the search bar and you’ll get a list of different PD groups. Local support groups in your area can be found by visiting the Parkinson’s Foundation website. It’s invaluable to be able to connect with someone who’s on the same or similar journey and trying to find their way. It helps to remember that you are not alone.
  • Find a Movement Disorder Specialist (MDS)? Some towns just don’t have one so you have to determine how far you’re willing to travel. Anyone with PD will tell you a good MDS is worth their weight in gold but if you’re unable to find one near enough to you, a good neurologist can help just about as well. Some tips: Don’t settle with the first diagnosis. Always get a second. Don’t settle with the closest neurologist or MDS. Drive the hour or two or three if you have to. It’s worth every mile. Ask your support group who they go to.
  • Exercise? This one suggestion on what advice to give a PD newbie was overwhelmingly at the top of the list of over 200 PD’ers surveyed!!! Start by discussing the topic of exercise with your doctor. We are all in different physical shape and what may be beneficial to one may be a bone breaker to another. I think one of the overall safest things you can do is walk. Keep your eyes focused in front of you so you can see any cracks or bumps that may trigger a fall. Take your well-behaved dog to help steady you or take a walking stick for balance. Whatever you choose to do – walking, cycling, boxing, dancing, Tai Chi – just do it! The earlier you start exercising, the better off you’ll be. As one person put it, “Exercise like your life depends on it because it does.” Move it. Move it. Move it.

Talk about it? You can start with a close friend and perhaps you’ll become so well educated you’ll be talking to hundreds at a time! This is where support groups shine, because you can talk about your experience without judgement, get new insight, not feel isolated or alone, and are surrounded by others who really understand.

Some advice that doesn’t need any input:

  • The more you stress the worse the symptoms
  • Take your meds on time
  • Cry when you need to
  • Everyone’s journey is different
  • Exercise.
  • It’s okay to ask for help!
  • Give yourself time to get your head around the diagnose. Allow yourself time to grieve
  • Don’t overthink having PD. Don’t dwell on it.
  • Keep a sense of humor. If you’ve never had one, it’s time to get one.
  • Try to stay away from stress. Stress makes PD symptoms worse. Eliminate what you can out of your life.
  • Discipline yourself. Get what info you can on PD and then make a plan. Get a routine on taking your meds on time. Keep a log/journal to take to your appointments.
  • Pray
  • Exercise.
  • Stay away from Dr. Google.
  • Exercise your brain as well as your body. Word games. Number games. Play games with your grandchildren or your kids or friends!
  • Don’t let it be a death sentence.
  • Never, never, never, never, never give up.

And… exercise.

Don’t Be Duped by Deep Brain Stimulation

Photo by Sherri Woodbridge

An article on Deep Brain Stimulation, by Dan Stark, recently came across my internet screen several days ago. I bookmarked it so I’d get back to it. It kept nagging at me to do just that and last night it kicked me into submission by means of a comment I received over it.

I think the reason I saved it and set it aside is because of the message it sends:

DBS, or Deep Brain Stimulation, is a god-send and although it does buy you time, as Dan Stark states in his article referred to above, eventually it fails.

It’s easy to forget this little machine, implanted into our chest and snuggled up near and dear to our heart, will some day give us up. It’s hard to think about our deep brain stimulator not working one day, leaving us to find our disease has progressed without us being aware of it happening. Or so it seems. What is easy to forget is that while we go walking without any aids, join our dance and boxing classes, eat without assistance, the little monster continues his deviant work of progressing the disease while we choose to think we’re going along on our journey just fine.

And we really can be – just ‘fine’.

But what this article reminded me, is that I need to remember to be realistic. While my unit may not give me up in the same way as it did to Dan Stark, I need to keep in mind that it could. You might ask why I’d want to think that way. Because I don’t want to forget this could be my last (for whatever reason) good day on my journey with Parkinson’s disease. If that is the case – then I want to live my best.

Any of us who have experienced Parkinson’s Disease for any amount of time know how it fluctuates and changes from day to day, moment to moment. We can be sitting in front of the TV one moment, blissfully captivated with our favorite re-run of The Brady Bunch and settled in with our popcorn and drinks and POW!!! The cramping features of dystonia hit you and the popcorn is spilled as you try to work out the pain. Any part of PD can hit at any time. It can be your constant, nagging companion or it can come and go.

Yes, even with Deep Brain Stimulation, there can be bad moments, bad days. Don’t be misled on the good days that flow together in what seems like the yesterdays of feeling good, that those good days are here to stay. But!!!! Do enjoy them. Cherish them. But don’t be duped and set yourself up for major disappointment.

As a commenter said on Facebook, in reference to Stark’s article, “‪Don’t be a “victim”. ‬

‪“DBS was never described, designed, or promoted to be a solution or cure, but rather, another treatment for an otherwise incurable, progressive disease. You had to have known that when you chose to undergo the procedure.‬

‪“You have been gifted with additional years of reduced symptoms that you would have otherwise not gotten without health insurance or the procedure.‬
‪Be thankful for the additional years of reduced symptoms, rather than a victim of some notion of medical mistreatment.”‬

‪Don’t dwell on the what could be but what is – now. Be thankful for each new day because each new day, whatever it brings, will bring something to be thankful for.‬

Taking Care of You

I attended a conference on Parkinson’s disease where one of the speakers stated, “Hope is medicine.” In so many ways, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard at times to feel hopeful.

One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. By the time you are diagnosed, you may feel like your whole world has caved in and diagnosis is like a thousand ton weight of steel that has just landed on top of you as you lay there in a pit of grief.

A hard thing for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which can lend itself to making depression one of its star players. It can play a toll in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our ‘happy’ pills. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted view, making it even harder to handle. Often, the distorted view only continues in a mental downward spiral.

If you’re struggling to find anything good in living with Parkinson’s, is it from viewing life with an outlook of despair and hopelessness? Do you think you may be someone who would benefit from an anti-depressant? Let me be clear – this is nothing to be ashamed of. Having PD is real and so is the depression that can come with it. I have told my husband (my caregiver) he has my permission to ask (when I feel like giving up in life) whether I’ve missed a dose of my meds. I can, within two missed doses, go from having a good day to wanting it all to end. It’s extremely hard, if not impossible, to care for yourself when your desire to keep going is all but gone. However, when your desire to live your life to the fullest is there, in spite of PD, this life can be a a pretty wonderful thing.

How can a life with Parkinson’s disease be a wonderful thing? As with any disease, it makes you take a different view of life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, unimportant or any of those lies we tend to feed ourselves, you may now realize that you are of value. Why else would you be seeking out a doctor’s care? A support group? Because you matter. You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something.

Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a homebound veteran tell of his experinces – do it. Doing activities like this can often remind us that things could always be worse and how good it feels to be able to help another.

If you can sing, sing out loud. It’s good for the heart and for those with PD – it’s good for the voice.

If you love to do artsy things, don’t stop because someone told you have PD. If you have to change to a different art form, change. Just don’t quit.

Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. If only intentionally around the house, walk.

Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Let them remind you of the truth – you  matter. They’ll remind you that you are here for a reason and gently ask, “By the way, did you take your happy pill today?”

Living with Parkinson’s disease is downright hard. It’s a day to day battle of pain, a fight for control, and an acceptance of the unwanted. It’s learning how to live a new normal while everyone else continues with the familiar. It’s learning to realize you matter and there’s a reason you were chosen to carry this load, to walk this path. So, while on this journey they call Parkinson’s disease, take care of you. Take good care of you.

And don’t forget to take your happy pills.

If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”

Chad Sugg, Monsters Under Your Head

Originally published 12/2016