As long as I follow a daily routine, my life with Parkinson's disease runs smoothly. This is not one of my humor stories; in fact, it's boring, but you might find it useful.
Here's what MY typical day looks like:
7:00 am: My bladder awakens me. I stay up, because I can’t find a comfortable position if I try to go back to sleep.
8:00 am: I take my thyroid medicine with at least 8 oz water.
9:30 am: I eat breakfast, which consists of fiber rich cereal and 1% milk.
10:00 am: I take 1/2 of a 25/100 mg carbi/levodopa tablet with either water or juice.
1:00 pm: We eat our main meal of the day and I drink at least 16 oz water.
3:00 pm: Nap for 30 minutes.
6:30 pm: I eat a sandwich on fiber rich bread or a salad and drink another 16 oz water.
7:30 pm: I take the other 1/2 of carbi/levodopa with water or juice.
9:30 pm: I have a snack: 1/2 an apple, or a few peanut butter filled pretzels or crackers.
11:00 pm: I go to sleep
These times vary, but not by more than 30 minutes either way.
If I take the carbi/levodopa before I eat, I get dyskinesia in both feet (watch video).
As long as I eat my fiber rich cereal and bread, I don’t get constipated. I have a daily bowel movement, between breakfast and lunch. Keeping hydrated and extra fiber is my key to this.
Occasionally we eat out at mid-day, but mostly we eat at home. It’s easier to reduce the sodium and fat levels if you make it yourself and my Wonderful Husband is an excellent cook!
Once a week, we have dinner out with a group of friends at 5:30 pm. On that day, my evening sandwich gets eaten around noon. Since we aren’t used to eating a large meal in the evening, and most restaurant portion sizes are huge, we often share an entree.
If a neighbor invites us over for dessert in the afternoon or evening, I skip the sandwich.
I don’t like the taste of coffee or tea. I don’t drink sodas because I don’t need the calories and caffeine makes me jittery, so I just drink water.
On the morning of our Parkinson's Support Group meeting, I must take my Parkie meds early, so that my speech is understandable. We wait until after the meeting is over to eat (eggs, bacon, hash-browns and wheat toast), so I skip my cereal on this day. I know ahead of time I will be dyskinetic, but my only other choice is to set an alarm and get up several hours earlier and that throws the rest of my day out of sync.
Please don’t suggest that I add this or subtract that. This routine works for me. I don’t gain weight, in fact I've lost a few pounds. It keeps me regular and my medicines seem to work well. It took lots of experimentation to figure out what is best for me.
Your Doctor doesn't have time to figure these things out, it's up to you to find your own routine.
Here's what MY typical day looks like:
7:00 am: My bladder awakens me. I stay up, because I can’t find a comfortable position if I try to go back to sleep.
8:00 am: I take my thyroid medicine with at least 8 oz water.
9:30 am: I eat breakfast, which consists of fiber rich cereal and 1% milk.
10:00 am: I take 1/2 of a 25/100 mg carbi/levodopa tablet with either water or juice.
1:00 pm: We eat our main meal of the day and I drink at least 16 oz water.
3:00 pm: Nap for 30 minutes.
6:30 pm: I eat a sandwich on fiber rich bread or a salad and drink another 16 oz water.
7:30 pm: I take the other 1/2 of carbi/levodopa with water or juice.
9:30 pm: I have a snack: 1/2 an apple, or a few peanut butter filled pretzels or crackers.
11:00 pm: I go to sleep
These times vary, but not by more than 30 minutes either way.
If I take the carbi/levodopa before I eat, I get dyskinesia in both feet (watch video).
As long as I eat my fiber rich cereal and bread, I don’t get constipated. I have a daily bowel movement, between breakfast and lunch. Keeping hydrated and extra fiber is my key to this.
Occasionally we eat out at mid-day, but mostly we eat at home. It’s easier to reduce the sodium and fat levels if you make it yourself and my Wonderful Husband is an excellent cook!
Once a week, we have dinner out with a group of friends at 5:30 pm. On that day, my evening sandwich gets eaten around noon. Since we aren’t used to eating a large meal in the evening, and most restaurant portion sizes are huge, we often share an entree.
If a neighbor invites us over for dessert in the afternoon or evening, I skip the sandwich.
I don’t like the taste of coffee or tea. I don’t drink sodas because I don’t need the calories and caffeine makes me jittery, so I just drink water.
On the morning of our Parkinson's Support Group meeting, I must take my Parkie meds early, so that my speech is understandable. We wait until after the meeting is over to eat (eggs, bacon, hash-browns and wheat toast), so I skip my cereal on this day. I know ahead of time I will be dyskinetic, but my only other choice is to set an alarm and get up several hours earlier and that throws the rest of my day out of sync.
Please don’t suggest that I add this or subtract that. This routine works for me. I don’t gain weight, in fact I've lost a few pounds. It keeps me regular and my medicines seem to work well. It took lots of experimentation to figure out what is best for me.
Your Doctor doesn't have time to figure these things out, it's up to you to find your own routine.
Hi Bev
ReplyDeleteThanks for the posting.
Did I count that right? Only 100mg of carbi/levodopa per 24 hr? But like you mentioned somewhere the DBS reduces the need. I had no idea the reduction was that significant. In 3 yrs I've gone from only needing approx 600mg to roughly 900-950mg. 550 used to get 6.5-7.5hrs of critical sleep,leaving only approx 350-400mg to get through my awake time, equating to lots of "off" time throughout the day. Only about 4hrs "on".
Very admirable. I have a schedule and I'm often off. Maybe I need a husband. Or a wife.
ReplyDeletePat V
Thank you for the insight. I try help the Parkies in my care understand the importance of establishing a routine that works for them and that they can sustain.
ReplyDelete