We have all been there before…. asking the question, “what can I do to improve my Parkinson’s symptoms?” I sit in a therapy session with patients as they describe their loss of balance, memory, movement, speech, and their connection with life in general. I always have the same answers such as, “Have you tried that new memory game? Have you met with that speech therapist? What about that boxing program for Parkies? Are those stretching exercises I showed you last week helping? There’s a new medication out for Dyskinesia.”
I’m a fixer. I see people faced with a challenge and I just want to help. I get disappointed when I know someone can do something to help their situation, but they just don’t do it. This got me to thinking… I know all the things I “should” be integrating into my life, but sometimes it’s difficult to follow through. But what if I did everything that was recommended to me? What would my week look like…
Monday:
Morning: Get up at 6:30 am. Take medications. While waiting for them to kick in, check up on the latest research on Parkinson’s online. Ballroom dancing class to help with my balance and posture.
Afternoon: Eat. Meds. Go to support group. Then on to my speech therapy appointment to help with my tone and speed of talking. Take a nap.
Evening: Eat. Meds. Meet with friends for dinner to prevent isolation and help build my Wolfpack. Write in my journal what I am grateful for in my life.
Tuesday:
Morning: Get up at 6:30 am. Take medications. While waiting for them to kick in, check medications and supplements for expiration dates. Boxing class for Parkies.
Afternoon: Eat. Meds. Movement Disorder specialist appointment, followed by a Therapy appointment to process emotions about my recent Neurologist visit. Take a nap
Evening: Eat. Meds. Do balance exercises while watching television. Practice my meditation and deep breathing exercises before going to bed at 10 pm.
Wednesday:
Morning: Get up at 6:30 am. Take medications. While waiting for them to kick in, respond to the latest Parkinson’s comments on Facebook, Twitter, and YouTube. Take a Tai Chi class.
Afternoon: Eat. Meds. Neuro-Optometrist appointment to monitor my dry eyes and spatial awareness. Complete a home safety check to anticipate any possible issues that I might have in the future. Take a nap.
Evening: Eat. Meds. Take a long walk with my dog Crash. Finish the night with some meditation and deep breathing exercises.
Thursday:
Morning: Get up at 6:30 am. Take medications. While waiting for them to kick in, do some stretching exercises with the band. See my Dermatologist for a skin check.
Afternoon: Eat. Meds. Go to the dentist for a checkup and cleaning because the PD medications give me dry mouth. Goat Yoga class… yes, it is real. Take a long bubble bath after playing with goats.
Evening: Eat. Meds. Read a book about living with Parkinson’s. Go to a painting class and create something beautiful.
Friday:
Morning: Get up at 6:30 am. Take medications. While waiting for them to kick in, check social media for any interesting Parkinson’s information.
Afternoon: Eat. Meds. Meet my personal trainer for a Pilate’s reformer session. Enjoy my 90-minute full body massage and spend some time in the spa.
Evening: Eat. Meds. Watch the sunset with my dog and eating FroYo on the patio. Read a book not related to Parkinson’s, maybe a Sci-Fi…
Saturday:
Morning: Get up at 6:30 am. Take medications. Attend a conference on Parkinson’s to learn more and meet others with the same condition.
Afternoon: Eat. Meds. Take a balance and functional movement class. Educate a stranger about Parkinson’s by sharing my story. Pick up my medications from the Pharmacy.
Evening: Eat. Meds. While watching television, do weight and core exercises.
Sunday:
Morning: Get up at 6:30 am. Take medications. While waiting for them to kick in, create a To-Do list for the next week, to ensure I stayed on task. Volunteer for a cause close to my heart.
Afternoon: Eat. Meds. Clean my house while wearing a postural vest. Go shopping for meals for the upcoming week.
Evening: Eat. Meds. Work on a puzzle to keep my mind sharp. Go to bed by 10 pm to start the whole week over again.
I guess my point here is there is no way you will be able to do everything suggested. First, you wouldn’t have a life other than Parkinson’s… boring. Second, you would have to be a millionaire to keep up with all the classes, activities and equipment. Lastly, you would just be setting yourself up for a stressful life… that defeats the whole purpose.
Here’s my advice… do what you can. Give yourself permission not to be perfect and to have an “off” day. I find it helpful to look for activities that you enjoy because it’s not going to matter if I say swimming is the best form of exercise if you hate the water… you’re not going to do it. Then create a schedule that is full of challenging Parkinson’s activities, but with the flexibility to have a wonky day. Now get those calendars out!
Allison- I love reading your posts! Your positive energy is amazing! Thanks for sharing your perspective with the world!
Thank you Anne!
I agree with what you say. We should look after ourselves but in a forgiving and enjoyable way. I want so much out of life. A couple of years ago I lost the plot and my life lost its balance and I became inactive. I am 49 and was diagnosed 11 years ago. I work full time and am separated but still have family responsibilities. I can’t do everything that perhaps I should. I have over the last 18 months changed my medication, made myself productive at work, started sleeping better and taking more exercise. In the last 6 weeks I lost about half a stone ion weight. I don’t do everything II lapse in my exercise or in my choice of food but whatever happens my life is a success. I have plenty to offer and plenty to enjoy.
Never forget to stay perky because it is what you deserve.
Jon
Jon,
Thank you for sharing your story. 11 years and still working… impressive!
Thank you for your great insight! I also accept what I can do that day. If I can do my full workout great! If today I can only do 2 leg lifts that’s ok too! By accepting me each day I feel empowered at any level! hugs, Karen
Karen,
Love how you have learned to accept you and what you can do. That can be difficult for many people. Thank you for the comment.
I too have a personal need to “fix”. I get disheartened when they are not followed, and thus, do less. I find there are 2 types of people. One will remain a “couch potato” no matter what. The other will fight right along side me, feeling better for it. Need to stop and just maintain myself, so others will see me and are encouraged. So much good news out there these days !
Well said Annie! Thanks for the comment
Perfect!….and thank you for the giggle!
You’re welcome! Thanks for the comment.
Hi there Alison.
One thing you forgot to mention during your week is remind yourself not to let Parkinson’s define you..honestly I never understood that comment because my life is all about working around my PD symptoms. I seem to go on tangents where I will say ok you need to step up on the exercise, eat better, stick with your normal nap time, take meds on time etc it goes on and on….the thing is I still progress, medication still increases (then I do well for 4/5 months).
I think the main thing all of us PWP is to find the thing we love doing. I find when I get over loaded with kids, house repairs,cut the grass, cut the neighbors grass everything goes downhill. I have to keep reminding myself STOP, TAKE A DEEP BREATHE, SMILE, LAUGH, REST AND MOVE ON..
Another enjoyable blog to read. Thanks.
Gary, you’re so right about not letting PD define you. It’s something I have to remind myself of that. Thanks for the comment!