Is it possible to be a healthy Parkie? Well, I have seen that some people with Parkinson’s do not always do what is in their best interest. They don’t take the steps to slow the progression of their illness. In many cases, they just feel overwhelmed and don’t know where to begin. Hopefully, this list can be a guide to help integrate healthy ways of getting ahead of your Parkinson’s. Here are 7 Things Healthy Parkies Do:
1. They don’t treat exercise as optional.
-What if I told you about a new pill just approved by the FDA that will help your mobility, increase your strength, stabilize your mood, sharpen your mind, decrease fatigue, alleviate constipation and help you sleep better? Have I gotten your attention yet? Then what if I told you that this pill has been scientifically proven to slow the progression of your Parkinson’s disease? I have a feeling that you would be sprinting for the closest pharmacy faster than a herd of snails.
This pill does exist, but it’s not taken orally, and it’s not a patch you place on your arm, you can only get this medication when you get up and exercise. Yes, exercise is medicine. Healthy Parkies don’t view exercise as optional, they know it’s a requirement to stay healthy. So dust off those leg-warmers and slap on those sneakers because it’s time to exercise… what’s your excuse?
2. They follow through with their Neurologist’s recommendations.
-So maybe we are all guilty of occasionally not doing what we are told… sorry, Mom and Dad. But remember, although we may think that we’re smarter than a dolphin, we don’t have the extensive education and training that our Doctors have. Healthy Parkies do what their Neurologists recommend. They keep regular appointments and communicate any new symptoms or possible side effects they are experiencing from the PD medications. This open dialog will help your Neurologist create the best game plan to attack your opponent.
3. They don’t see themselves as weak or a burden.
-Thinking that you have become a burden or have become inadequate since your diagnosis is just as useful as a pogo stick in quicksand. Don’t let Parkinson’s define you! You are not your illness. Healthy Parkies understand that they can still do things that they used to do, but they might have to modify it. As for the fear of becoming a burden, remember that a burden is something that is placed on you, not something you choose. Your loved ones are choosing to be by your side, regardless of Parkinson’s.
4. Regardless of diagnosis, they remain grateful.
-Yes, PD sucks. Yes, it can rob you of many things. But healthy Parkies are grateful for many things that Parkinson’s has brought into their world. Besides being able to do a spot-on imitation of a sloth… a great party trick… they are grateful of how Parkinson’s has strengthened their relationships with friends and family. Parkinson’s disease can also be a great tool for weeding out toxic friendships. You find out who is really going to be there for you when times get tough.
So if you are really struggling with the emotional pain of have a degenerative disease and you feel awfully alone, grab a piece of paper and a pen. Then begin to jot down things in your life that make you feel grateful and before you know it, that paper will be full. Now I can hear some of you rolling your eyes. But I am sure that you are grateful for the bed you sleep in, the roof over your head, or the many people who are working hard each day trying to find ways to manage PD. Sometimes we take things for granted without acknowledging how blessed we truly are.
5. They are their own advocates.
-A healthy Parkie gets involved in their own treatment. Don’t just sit back and let Parkinson’s take over. They fight it. How? They educate themselves on the disease. They will learn about the treatment options and programs that provide support to Parkies. They seek out resources that will help them, such as Perky’s Picks… I know, shameless plug.
If a healthy Parkie doesn’t feel that they are getting the best care, they get a second opinion. If they need a medication that is too expensive, they investigate patient programs that they could qualify for to help with the cost. If insurance doesn’t cover a name brand medication they will recommend the generic form if available. If the healthy Parkie takes the generic but has a bad reaction, they will notify their Neurologist to keep them updated. Then they will pick up their phone and contact their insurance company and see what options they have available to them, such as a tier exemption, which allows the name brand to be covered with a manageable co-pay. A healthy Parkie is willing to jump through the hoops of managed care to get the best treatment for their Parkinson’s disease.
6. They give themselves permission not to be perfect.
-This one is a tough one for me! Healthy Parkies recognize that their Parkinson’s can make daily activities seem daunting. Everything takes longer to complete and then fatigue kicks in and you find yourself on the couch feeling like a failure, watching “Keeping up with the Kardashians” while shoveling stale Twinkies down your face hole… oh really? Just me?
Healthy Parkies give themselves a break if they’re having a difficult day. Maybe you won’t get to that heaping load of laundry, or that trip to Costco to purchase a gallon of mayonnaise. But they don’t’ beat themselves up about it. They don’t view their lack of efficiency as negative or need to take an afternoon nap as lazy. They don’t compare themselves to their Pre-Parkinson’s self. They accept that they might not be able to complete all the tasks that they attempted to do but in turn celebrate what they did get done that day. Just like my friend Davis Phinney says, “Every Victory Counts”. Seek out moments, regardless of how small, when you were able to overcome Parkinson’s.
7. They beef up their PD Wolfpack.
A healthy Parkie knows that Parkinson’s doesn’t impact one person… So why would you try to deal with it solo? Your PD Wolfpack is a group of people (or pets) that you can rely on when you’re Parkinson’s is acting like a butt-head. Keep your pack strong, so you always have someone to fall back on when you need support… or just someone to howl at the moon with.
P.S. I am always accepting applications for my Wolfpack. Applicants must be able to understand that my fro yo “addiction” (that’s what my therapist calls it) doesn’t impact my ability to work and that I feel the best way to address this so-called “addiction” is exposure therapy. With that said, frequent trips to Yogurtland should be expected. It’s not enabling if it’s a crucial part of my treatment.
I love everything about this post. My sister has PD and I am her biggest fan. I wish she was her biggest fan though. She was diagnosed in Jan 2018 and is still in denial. She keeps seeking other reasons for her symptoms. She doesn’t understand what TRUE exercise is.I pray she has a wake up call soon. She has just started to attend support group = I joined her. Everything I have been telling her came out in that session and I could not have prayed for a better scenario. I refuse to lecture here. She is an adult after all.I just love my sister and want her to be ok – even though she is not ok.
Thanks for sharing your gift of positivity with this community!
Joy
Joy,
Your sister is lucky to have such a loving person like you to help her through the difficult times. Hopefully, the support group can provide her clarity. Thanks for your comment and best wishes to your sister!
Just discovered your blog and it is wonderful! I’m going to make your “Seven things healthy things Parkies do” my new morning meditation and read it every day. I am twice your age but you have a lot to teach me. (For one thing, I love the name “Parkie” and had not heard it before!).
I have always enjoyed exercising (walking, yoga, gym machines) and one really frustrating thing is that I can no longer do everything I want to. I have tended to overdo it on days when I feel well and then pay for it the next day; I’m trying to learn how to pace myself. I also need to remember to be grateful: I had over 70 good years before I was diagnosed with PD last year. I have supportive adult children, one living with me and the other nearby. And I have wonderful friends. — I guess that’s my “Wolfpack”.
Thank you.for helping me to see that I’m not alone and that there are still many things I can do.
P.S. I also enjoy reading the comments and seeing how others are learning to live with PD.
Hi Barbara,
So happy to hear you enjoy my blog! And you are well on your way to creating a strong Wolfpack! Bravo. Sometimes it’s easy to forget that we are not alone.
You make someone pause, drink in your words , irrregardless if their issue is PD or not. I know that you give me a hand. Look forward to your blogs.
Know people that you have helped and consider you quite a motivator. So do I.
Chris, thank you for your kind words. Made my day !
Hey there Allison how about coming for some good winter exercise this weekend? Snowmobiling! It is great exercise in itself but we are also clearing the trail of trees and brush so that it can be groomed. You will either sleep like a baby from all the fresh air or be to sore to sleep or do anything else, lol. Keep on going girl, you are a great inspiration.
I hope that you are recovered from your operation ordeal so that you can do all of your usual things again and are feeling much better. God Bless you for all you do for all of us!
Tim, thank you! I am going back into surgery on Wednesday morning. But I do see light at the end of the tunnel… even though it very small.
Another awesome blog, Allison! Off topic, I used to take my parents to the Parkinson’s (DBS) Support Group at St. Joseph’s Hospital in Burbank. That’s where we had the pleasure of hearing you speak (which, to date, I think was the absolute best meeting we ever had). Unfortunately, the group is currently on hold until SUMMER due to staffing issues within the neuro dept. That’s an awful long time to go without meeting. If you’re aware of another group in the area, can you please let me know?
Hi Rupa, I am sorry to hear about your group. I would try to locate a group using these 2 websites…hopefully, it can help you a bit. Have you thought about finding someone who can keep the group running while St Joseph’s gets the neuro department in order… just an idea. Good Luck! Let me know if I can help out with anything else.
https://parkinsonscommunityla.org/support-groups-by-location/
https://parkinsonscommunityla.org/support-resources/
Another great post, Perky! Thanks for sharing. I was reminded of the importance of gratitude this week while volunteering at a homeless shelter. It was a viivid reminder of how blessed I am.
John,
What a great experience volunteering at a homeless shelter… it must really put things in perspective. Keep up the good work.
I had a bummer week last week….more losses. You reminded me to be mindful of how many parts of life i still enjoy and to be THANKFUL !! And of course, to exercise…not because i’m hoping to win a prize, but as an expression of thankfulness as well 🙂
Rebecca,
Showing your body some thankfulness by exercising is an awesome expression. I would give you a prize for you just showing up!
Rock steady boxing at least 2- times
A week and walk jump rope do something
Everyday
It works
Fred,
You got it! Do something to better yourself every day, even if it’s just balance and stretching exercises from your chair, just move!
II don’t have an idea that how much exercise I need to do. Unfortunately I am not athletic at all, the only thing I can do is power walking and stationary biking. how much time and how often?
Jean,
Power-walking and stationary biking is a great form of exercise. I try to think of doing something to better myself every day. You want to get to the point that you’re sweating and you have elevated your heart rate. Make it a part of your daily routine, then when you’ve made that a habit, you can add in an exercise band or a pair of small dumbbells. Don’t over think it… you just need to get out there and move. Good Luck!
I thank you for the very realistic suggestions. My right shoulder is too tight to attend the Tuesday classes. I am working with a physical therapist. hope to return to the classes soon.
You’ve been missed Jean! Take care of yourself.
Excellent, excellent, excellent!! Your recommendations are spot on! (For me, it’s not the Kardashians and stale Twinkies but Devious Maids and Magnum ice cream bars). You make me laugh and we all need that!
Lauren, Devious Maids? I’ve got to check that out…
hey there. great post. i exercise daily, even if it’s juat pushing my body up while sitting on couch. exercise is great stuff…
Kem,
There some wonderful videos on YouTube that show exercises that you can do using only your body weight. Find things that challenge you, but also stay safe!
Right on Perky!!! Right on!
Hugs.
Thank you Sharon!
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What a great read. Was starting to feel a bit down (as sometimes happens) but this has picked me up.
Thank you
Sandra, happy to hear my blog lifted your spirits a bit. Thank you for your comment!
Let’s Beef up our Wolfpack! Love it.
Thank you for this new post! You’re really sparkling motivation! I hope you’re doing well. Véro
these are such good suggestions. #3 is the hardest for me. i’m a husband dad grampa–i’m “supposed to” be strong carry the burden. my head gets it but my heart is still learning even 15 years after being diagnosed. i appreciate your spirit and sass.
I think #3 gets us all occasionally!
I always enjoy reading your blog, and this post was no exception. All the points you gave are good advice – I find no. 6 to be my own personal downfall. I hate to admit I can’t do something. I hate to admit I need help with something, and I hate accepting help from others even more…
Thank you Allison, Great stuff as always. I agree with the exercise , it makes me feel so much better.
I do try to avoid taking my sentiment if I’m just going to be staying home because I thought I would build up a tolerance like Steve said, new thinking is it prime the dopamine receptors?? I’m better start taking my correct dosage.
Always do what your Neurologist says. But I know building a tolerance to Sinemet is not necessarily true. Happy to hear you enjoy my blog!
Wonderful topic Allison…. since my diagnosis 4+ years ago, I’m reaping the benefits of focusing my PD treatment, coincidentally, around ‘The 7 Things’…. While it took a little while to establish, I now feel that I live and breathe the fundamentals of those 7 categories every day.
It’s not easy to maintain, yet I’m confident that my optimistic approach and dedication to balancing my daily routine has made a significant difference in the pace of my PD progression.
I do hope that there are others that are as fortunate as I’ve been, keeping in mind that not every day is a bowl full of fro yo ….yet it feels great to believe that fueled by hope, this fight is far from over.
Shane, it’s so hard to try to get a head of PD, especially when you’re not actively working on it each day. I’m so happy to hear you’re making it a habit to kick PD’s arse!
It’s been a little over 2 years since I’ve posted the comment above and things have changed for me, mostly for the better, at least for what matters to me…sure my PD is progressing slowly and some symptoms are more discouraging and affect my efficient use of my limited ‘on time’ but I’m still confident that I’ve been better off adhering to my daily routine..knowing when to step up and take on a new challenge and when to know it’s ok to say ‘no’..
My exercise and rationed energy now has a focus and a direct impact on my PD since joining Rock Steady Boxing in August of ’16.
While blessed with a gift to not fear standing up in front of groups of people, I volunteer and fundraise within and outside the Parkinson’s community, creating awareness – knowing that many within our community may be unable…we have each other’s back..
I’ve found a use for my love to write, whether it’s poetry, short stories or sharing my journey with the new partner I’ve come to accept though not welcome, PD…
Most recently I’ve found a way to expand my love for music, as I’ve taken an interest in composing and arranging instrumental tunes…
I’ve met some amazing people and I’m building some wonderful friendships within and outside the PD CommunIty along the way….
But this all takes work and a perpetual shuffling of my lessening capabilities … all well worth it.
What has been most rewarding, has been my acceptance of my PD… it has made all that I’ve mentioned above, much easier to live with and make the best of…my energy, my time, my day are to precious to be lost on fight, on anger, on carrying a scowl ..
Allison, you continue to inspire – thankfully your blend of humour and fact is a bridge to reach the sensitive topics..
I’ve seen how many of us, who may not think we can make a difference yet step up and take action on just one of the ‘7’ items, are inspiring someone out there in our world that we all share…
Thank you for such a sweet comment. It brightened my day!
Good stuff! I can be positive!
Perky you nailed it again! It’s the erratic , random nature of this thing that confounds me. Just when I think I have it figured out BOOM! and I feel lousy for not expecting it and then later I feel lousy for not being more in control. Your advice on exercise and positive realistic expectations is just what I need to hear. I’m thinking of having some of them tattooed in reverse on my forehead so every morning when I look in the mirror I’ll know what I should be doing.
How is Crash ? He looks sort of sad. Give him a good scratch behind the ear for me.
Maybe tattooing your forehead is a bit extreme! Ha! Crash and s doing better. Thank you for asking! I will make sure to give him extra scratches from you!
Allison, thank you for reminding me of these 7 healthy tips. Tip #6, is my challenge. I get overwhelmed when I fall too far behind in all the things I want to do. But when I’ve had proper rest, or a walk in the sun, or attend a PWR!Moves for PD exercise class, or sit in our garden reading a favorite book, I feel less overwhelmed and more in control of my priorities. Giving myself permission to rest, without guilt, or permission to let go of perfection is the very best “medicine” I can give myself.
Sometimes it’s important to give ourselves a break! We are our worst critics.
Kardashians?? Why would anyone support those low lifes? So many other options to meet up at exercise classes, family or maybe cooking classes on TV? Keep pressing on!
You always have informative comments. Glad I found your blog site
Happy to hear you enjoy my blog. Thank you for your comment!
Great read Perky. Just when i am doubting myself that I am not doing enough to help to myself with my PD you write this blog. It was a terrific reminder that i am doing a lot of these things. It is amazing how intuitive you are.
Keep up the great work! We all need reminders from time to time.
Wow- everything I am not doing! I guess I best get working on my list! I will exercise, if exercise slows progression! I didn’t know that!
Get to movin! Glad my post could help!
What kind of exercise do you do? And, how long do you do it?
I do yoga or boot camp for an hour 4 times a week. Then I teach 2 Parkinson’s fitness classes a week and walk my dog Crash everyday. My goal is to do something active every day.
I did 35 minutes on the recumbent bike today. I am trying to move each day!
Check you out! You’re on fire!
I love your blog….I have two to three weeks of great and then WHAM couch potato for a day or two….I,m not on any meds but have a terrific movement disorder neurologist…..l do the prouty run..5k more like a walk and wobble…..walk the hounds …paint and photography…glad my camera has an anti shake sensor…..keeping ones brain in gear is the way to go…….have probably had PD for the past 11 years but diagnosed in 2011…….bit of a bummer but no use sitting on ones rear end bemoaning the fact…..lots worse things out there….
Parkinson’s isn’t defining you! Keep it up!
Ann, why no sinemet??? Old thinking was you built up a tolerance, new thinking is it sort of primes the dopamine receptors so they function more efficiently and maybe even a little longer. Unless of course they have some bad reaction in your particular case. Just hate to see you suffer if there is something that might help. Hang in there you sound like your ducks are in row.
I love you Allison!!! I feel the way you do about this PD……thank you for your consistent inspiration and your ideas to keep kicking PD in the butt.
Thank you for your kind words Terry! I hope you are doing well!