I have been having a little bit of a challenge with my Parkinson’s disease lately. It has been, shall we say frustrating… yes, I can think of more descriptive words to describe the current state of my health, but I will refrain. I used to be able to know my body and how my symptoms respond to my everyday agenda. But lately, my Diva Parkinson’s has been making unscheduled appearances and she is wearing out her welcome.
In the morning, I wake up and shuffle out of bed, brush my chompers and then pet my dog Crash (who is always appreciative that I brush my teeth first). I slowly move towards the kitchen, trying not to get distracted from my mission of getting drugs in my tummy so I can start my day. Pour a bowl of boring cold cereal and then I chug my cocktail of medication… then I wait. Within 30 minutes I start to feel my Sinemet kicking in. Ahhhh yes! Now I can tackle the day with the confidence of knowing that I am good to go until lunchtime.
But now the fluctuations of my “on/off” time have become unpredictable. It doesn’t matter if I take the exact same dose of medication, at the exact same time… each day has been different. Sometimes I will be so dyskinetic I can barely sit still. Although this has made my apple watch happy (which tracks my daily steps) thinking that I am hiking 7 miles a day, it can make for an exhausting afternoon. Or I can be “off” feeling rigid and slow as a sloth… an adorable sloth of course.
And if that wasn’t enough of a roller coaster ride, I don’t know how long my symptoms will last… could be an hour…. or last all night. This has made it difficult to fill my social calendar, seeing as I don’t know how I will be feeling at any given time. I am still optimistic about finding stable ground with my Deep Brain stimulation and the perfect combination of medications. But I am also realistic about the progression of Parkinson’s disease… Inconsistency is like the “free gift with purchase” when your buy the PD package.
Now you might be feeling sad to hear that I am having some trying times, but I don’t focus on the negative. I don’t let the fear of Parkinson’s take any space in my head. I don’t look at what I can’t do anymore. I don’t waste anytime worrying about the future “what if’s”. I stay in the present. I am grateful of what Parkinson’s has given me. My life is full of love from family and friends. My PD wolfpack is strong. So instead of stewing about the loss I am experiencing…. I focus on what I can do.
I can go hiking with my dog Crash in the Arizona desert…in the winter of course! Even though I may move slow, or may have to take breaks, I can still get on that trail and enjoy the cactus… I mean fresh air.
I can embrace the suck. I got the “fuzzy-end-of-the-lollipop” kind of life being diagnosed with Juvenile Rheumatoid Arthritis in my teen’s, Colon Cancer in my 20’s, and then Parkinson’s disease in my 30’s. But I can make a choice to be positive about the gift I can’t return and embrace the uniqueness of my life… hey, my mom always said I was special!
I can exercise everyday. Although some days are better than others, I still push through it. Being a PD ninja warrior princess is a hard job, but someone has to do it!
I can find Fro yo in all parts of the world, from Boston to Amsterdam. I swear they must put crack in it.
I can get involved in my Parkinson’s community and become an Ambassador for the World Parkinson’s Congress (WPC) 2016 in lovely Portland, Oregon. If you haven’t yet registered to attend, do it now…click here! If your on the fence about going this year, let me persuade you. Then Congress is a 3-day PD fiesta. You will be surrounded by professionals in the field, care-givers, and of course Parkies… lot of them! Last WPC held in Montreal had almost 3,500 attendees from around the world! Are you getting giddy yet? The WPC only happens every 3 years! And what even better? I am speaking at two of the events…you in?
I can be a dork… like really dorky.
I can go zip-lining over massive waterfalls in Hawaii without peeing my pants. Alright, so maybe I did… but it wasn’t a lot, just a squirt.
I can find inspiration and passion in things that have nothing to do with PD. Parkinson’s is a huge part of my life, but it’s not my whole life… it doesn’t define me.
I can still Ballroom dance. Yes, you can say it… I make Parkinson’s look good!
I can win awards like a boss! Hey, I can’t help it if I am a winner…
So I think that I have made my point here. Yes, things can be challenging, but I focus on the positive. The great people that I have met, the opportunities that have come my way, the friendships I have created and the Parkinson’s adventures I have had. I won’t focus on the what I can’t do, but what I can do… Like rocking this Yoga pose… what Parkinson’s?
For me, two things affect whether I’m off or on. (1) Timing is everything. I have to take Sinemet on an empty stomach every three hours. If I’m a half hour late, my day is thrown off. Part of timing is eating – no food for 30 minutes after I take Sinemet, or for an hour before.
(2) Stress trumps all. If I’m in a stressful situation at work, by mid afternoon I get uncontrollable fidgets. When I went on vacation to San Diego and spent all my time walking on the beach, there were fewer problems.
Thank you always for writing with such verve, wit, insight, and honesty. You’ve been through so much yet you’re still coming out on top. It’s inspiring!
I couldn’t agree with you more! Timing and stress. Enough said.
What a girl!
Inspiring!!
It never fails that when I am having a bad day I receive your blog. It always makes me feel blessed and lifts my spirits.
Happy to help! Hope your day gets better!
Try taking your meds with a tablespoon of coconut oil in the am. The days I eat it I feel better. Buy the unrefined good stuff.
Ativan works for my unexpected dyskinesia. Only 0.25 to 0.5. Plus it makes you happy!
I’m 38 and was diagnosed at 29. I had unilateral DBS 2 years ago.
I hope this helps!
Great suggestions! Thank you for sharing.
Does it make a difference what fods you eat when you take your pills..ie protein. !, citrus…vit k.
Certain foods affect effectiveness of pills
Yes, protein can compete with the absorption of Levodopa. You want to take your meds 30 minutes you eat, if you don’t get nausea.
Its sort of like driving down a beautiful winding road and at totally random intervals a seagull takes a dump on your windshield. Every time this happens your car speeds up and you can see less and less. The drive is just as beutiful but it soon gets real annoying.
Looking forward to WPC in Port;and . Anyone know about this Buddy thing? Should I sign up for it? So glad I found your blog a couple of months ago!!
Yes, you will want to get in on the Buddies program for WPC. What’s better than making a friend! Here is more information about the program: http://www.wpc2016.org/?page=BuddiesProgram
When it cones to PD I have two phrases I always tell people: 1) I have Parkinson’s, it does not have me. 2) I am too stubborn to quit, and too stupid to know when I’ve been beaten!
Ha! Love it!
I look forward to your blog. It is so uplifting. I too, have trouble in the morning until the sinemet kicks in, so friends don’t know if I will join them for morning activity. I am having trouble overcoming the anxiety of driving. My husband would always cover for me but he passed away almost a year ago so am having trouble trying to get confident enough to transport myself which I so much want to do so I am not dependent upon my friends, although they have been wonderful, I want to be more independent.
Reading your blog is so encouraging, Thank you Allison.
I can only imagine the loss of independence that you feel by losing your ability to drive. Sounds like you have set your boundaries with your friends, which is awesome. They know that you are not just flaking on them, it’s all dependent on how your PD is acting that day. Keep your PD Wolfpack strong so you have the support and love that you need. Thank you for your comment.
You go girl!! Perkiness puts away Parkinson’s!
You called it!!
Thank you for your inspiration Allison.
You are the best!!!
Hope you’re well Terry! Think of you often!
you inspire all of us!!! thank you for all that you do Allison.
I have had many of the days you describe. I always think of the children’s book, Alexander’s No Good, Horrible , Bad Day. Then, as in the book, I tell myself, tomorrow will be better. Parkie’s just have to take it one day at a time. I am not worrying about what will happen a month or a year from now. I am just going to enjoy everything I can right now. Your blog is always a big “pick me up” for the Parkie community. You are truly an inspiration!
Thank you for your kind words. I always have to remind myself, that living in the moment is the only way to stay sane!
Hey perky,
The guy upstairs , no not Jim in accounting, was very selective in who he gave this disease to. He gave it to the strong he gave it to the resilient he gave it to the articulate and in short gave it to those who can handle it. Like you I consider myself fortunate to have found the silver lining in the cloud that is PD. Friends that I have made , book that I have written would not have been possible without it. I could do without the drool
You are so right Alan! Sorry about the drooling, but as I keep telling myself, it could always be worse! Thank you for your comment!
I appreciate your blog and always look forward to reading it. You say it like it is, sister!
Happy to hear you enjoy it! Thank you for commenting!
I’m having a bad day then your blog comes up and you remind me of all people that love me thanks perky parking
Everybody needs a little reminder of what we need to be grateful for. Thank you for your comment.
I like you, I respect you, I adore you, love you and love you my hero Ally!!!
Thank you. I miss seeing your smiling face my friend.
Thank you Perky!
When did you get your DBS?
I was just turned on 1 week ago!
You should see the NEW Roger 🙂 🙂 🙂
Are you sparky the parkie now? I got my DBS 6 years ago. Coming up on my anniversary on the 18th!
Basically, what you are saying is:
Concentrate on what you CAN do not what you CAN’T do. However, you also need to push out the boundaries of your comfort zone out a little just to see what you are capable of achieving. And Perky you are not only a winner and a leader you are an Achiever!
You hit the nail on the head! Get out of your box!
Perky, I great admire your optimism and positive attitude and agree that it’s vital for us with PD to focus on what we can do as opposed to what we can’t. It can be frustrating when we don’t know what our body is doing. I had one of those days this past Monday and it was very frustrating. Thankfully, not every day is like that.
I will be attending the WPC and look forward to your presentations and, hopefully, meeting you.
Awesome sauce! I will be there all week in September!