Ruled By the Clock

By Thea Destephano

2 min read

One of the main complaints my fellow people with Parkinson's disease (PD) seem to have is being regulated by the clock. I share this complaint. I took off my watch the day I retired and enjoyed the freedom of setting my own schedule. Parkinson’s disease has taken that freedom away.

Having to plan around down times and when the next dosage of medication can be taken often causes me to cancel my plans with friends or family. This is disappointing and not always easily understood.

Medication timing

The time I take certain medication also determines when I have a meal. That can be particularly difficult to plan around doctor's appointments, social activities, exercise classes, and more.

Since I do not take any medications strictly for Parkinson's disease, I have a little more flexibility as to when I take my medications. I do take omeprazole for acid reflux which needs to be taken half an hour before dinner and mirtazapine about a half hour before bedtime for sleep.

I try to space out my other medications as it is difficult for me to take them all at once in the morning. However, I do try to take them at the same time every day to ensure they’re being as effective as possible. My phone alarm is set to remind me with a different sound for each one.

Exercise sessions

At present I am exercising from home and breaking my routine into 2 sessions of 20 minutes per day, which I schedule. Other than laps around the house, that is all I can handle at the moment.

Personal routines

In order to obtain the best quality of sleep I go to bed at the same time every night. After washing up and brushing my teeth, I remove all electronics from the bedroom, and at 9:30 PM I put on a Calm meditation or some classical music and take my mirtazpine. Then, I hope I will be asleep by 10:00 PM.

Although I usually am awake, my morning alarm is set for 7:30 AM. I do a series of bed stretches for 10 minutes to loosen my stiff joints before getting out of the bed. Then I am ready to begin my day.

Everything takes much longer to accomplish now and I have learned to accommodate for that. I have purchased clothing such as dresses, pants, and shirts that can be slipped over my head with no zippers or buttons. My shoes also are slip on which happily are on trend. There are no shoelaces to struggle with.

Although I have always had a short hairstyle, I had my hair cut into a pixie. I no longer need styling tools. I don’t even need a brush or comb, just styling products and my hands!

Routine is a necessity

Although it still takes more time than it once did, these changes have made getting ready to face the day simpler and my new clothing purchases speed up the process of getting dressed

I never imagined living such a structured life, but the routine is a necessity when Parkinson's disease is in the picture.

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Sedona2012 Member
Thea, Very good piece. I was lucky to retire early, along with my wife. We had our plans and dreams. It is really funny that we did not clear stuff with God. He had different ideas about the future, my Parkinson’s has changed every thing. Thea I am like you and my life has become very structured around medication, eating and exercise to name just a few. You are a very good example of someone who makes the adjustment seem doable. Blessings, Mike 
1. Thea Destephano Member
 <inline-mention username="Sedona2012" user-id="4214033"/> Thanks Mike. The need to be so structured has become a necessary part of life and actually makes all the challenges involved a way to keep my day under as much control as possible. Thea
Jensen53P Member
Hello Thea, It’s always nice to hear from you. Reading about other PD sufferers helps in a number of ways. The Main two ‶lifeboats ‶ I suppose are : finding out that my catalogue of problems caused by PD are low on the list of what my fellow PD members go through (selfish, I know); secondly, reading about the various treatments that I would never have thought of, such as mind therapy and so on. Being able to unburden myself by talking about my PD is a selfish way for me to help cope with the irritations of the disease, for which I apologise to the bored listeners! My most difficult hurdle to overcome at present is to control my legs and be the master of independent walking. I get around fairly well using a Frame (two small wheels at the front, ordinary frame legs at the back). Unfortunately, the distance I can cover is not up to Olympic standard. I need the confidence and safety of having a companion by my side when I walk any distance, using a mixture of Frame assistance and independence. As I mentioned before, Thea, I am so lucky to have friends and family who look after me extremely well. I find that when I get up in the morning, I wake up around 5-5:30 but do not get up out of bed until around 6-6:30 due to it being too overcast to see how to get dressed. I find that in the mornings I am usually quite mobile with not too many wobbles. On a good day I can maintain this optimistic routine until around 6 in the evening; but on a bad day I struggle to get around from about mid to late morning. Fortunately, I have become independent in looking after myself. I can put myself to bed, get up out of bed, dress myself, shower all without assistance. A few years ago I needed help in doing all these things. To someone who isn’t a PD sufferer ‶so what ‶, what’s the big deal! I probably sound boastful (sorry) but it has taken quite an effort to get to this point. My wife, Pam’s, health over the past years has degenerated somewhat (she is 86), so would find it difficult to look after me anyway. The medication regime is working well. I asked my Doctor again if I could cut back on the 16 various pills I take each day; she didn’t feel it would be a good idea as she was concerned that upsetting what seemed to be an efficient dosage might cause regression in its effectiveness; I agree with her. I agree with the early signs of PD that you mentioned: Trouble standing after sitting - sometimes this still is a problem Stiffness in the limbs Moving more slowly Happily, of the 4 main motor symptoms, bradykinesia seems to be the only one that causes a noticeable problem. On the other hand, can I add the following to my awkward list: Speech issues, such as a monotone voice or soft speech Drooling Stooped posture Walking issues, such as shuffling, freezing, and short, quick steps and a hunched posture Trouble in sleeping; difficulty in getting a good night’s sleep Your comments about the ‘’chemical ‶ effects on PD is so interesting; it is an area of which I have virtually no knowledge. Your information on what these mysterious drugs do is most illuminating. Thank you for taking the time to study what effects what. Looking back on what I’ve written I find I have been somewhat verbose, Thea, for which I apologize. Keep well and happy. Chris
1. Thea Destephano Member
 Chris It is always so good to hear from you and hear that you’re doing so well. It sounds like you are basically pretty independent. Best wishes going forward. Thea
Jensen53P Member
Good day Thea, I follow my PD medication regime fairly strictly. That’s not to say I don’t miss the odd time slot now and again and go without the Meds that I should have taken at, perhaps, 11 in the morning or 3 in the afternoon, but on the whole I’m quite disciplined. The psychological effect on me of not keeping to my schedule is one of the reasons I make sure my pill boxes are filled every morning so that at 06:00, 11:00, 15:00, 19:00 and 22:00 I can open the relevant pill box knowing that medical support is available to help me combat my PD. How are you managing to cope with your PD symptom, Thea? Very well, I hope. Five of us family members all went out to lunch together yesterday. We went to a rather nice and large restaurant which offers lots of space and tables with space enough to sit around, chat and to place my Frame where it doesn’t get in the way. Makes a change from many eateries where anyone with a Frame or Wheelchair is a nuisance! Although there is a fair amount of space between tables I am able to walk without a problem by using my Frame. I have been chatting to my daughter lately about the temptation I have to walk without relying on my frame for support. At times I feel confidant enough to walk around the kitchen table without my frame; use exacerbated steps and arm movements. But I know should I have a serious wobble there is furniture within grasp for support. I followed a serious of PD exercises on TV which were rather effective in helping me tackle various obstacle. Well, Thea, enjoy your day and restful time. It is always so encouraging to here from you. Chris
1. Thea Destephano Member
 <inline-mention username="Jensen53P" user-id="3049580"/> Chris I have had a few setbacks that affect my exercises but I still do what I can. Tomorrow I am beginning a series of biofeedback training to help with some ongoing digestive issues. It seems my brain is misinterpreting signals and causing me problems. I am fortunate that UVA is one of the few clinics in the country that offers this. I know what you mean about wheelchairs in restaurants. We always call ahead even if we are only a few minutes away. The staff appreciates it and always manages to find a comfortable place for me that is not in the way. My PD symptoms are mostly under control it’s the arthritis, digestive problems and my other movement disorder that keep me vigilant. I still take no medications strictly for PD. I am glad you are getting up and about it’s important. We are both fortunate to have such fantastic support. Take care,Thea
Jensen53P Member
Hello Thea, Although it’s always very nice to hear from you I am dismayed at what I read at the bottom of your ‶letter ‶. Setbacks are irritating for anyone especially when they effect your exercises. I do hope they swiftly pass on. Brainfield training is another irritation you can do without too, I am sure, Thea. You say that your brain is misinterpreting signals the result of which are causing problems. Oh dear, Thea, having physical problems is annoying enough; at least that kind of annoyance can be addressed using external actions and gauged as to whether or not improvement is taking place. It is so fortunate that you have access to a UFA clinic that offers the type of service you require. Know something, Thea, I never thought of calling ahead to find out if a restaurant has space enough and is willing to accommodate wheelchairs and folk who aren’t going to want to do the Tango! I definitely will in future. I don’t know if I ever told you why I chose Jensen53P as my recognition, Thea. Well, poor you, I am going to you anyway. Stand by to be bored! Jensen 53 P was the registration number of my last personally-owned car. After I sold it I carried on driving Company Cars. That last personal car of mine was a Jensen Healey, with a Lotus racing engine, quite fast. Quite fast, good acceleration from 0-60. A Drophead with soft top, and a removable hard top. Every boy’s dream! Hope you didn’t fall asleep. I do hope you quickly feel better and are back to much better health. Best wishes and kind regards
The Herb Lady Member
Just a thought. I use Alexa to remind me when it's time for some of my meds. Since I wake up when ever I happen to, my times vary from day to day. I start with my thyroid pill and then 2 hours later the carbodopa/levadopa pills. And two hours after those then Restore Gold. Any others are taken with meals.
Thea Destephano Member
<inline-mention username="The Herb Lady" user-id="6622104"/> What a great use for Alexa. Thanks for the tip. I don’t use Alexa at all, perhaps I should reconsider. Thea

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