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By flowers12 On 2016.06.27 12:58
Does anyone else notice that their PWP seems more alert and able to hold a conversation before their meds in the morning? Or if your about an hour late in getting the meds? It just seems like my hubby is better before he gets his meds or when they have worn off before the next dose. Sometimes it makes me wonder about the meds. I've never withheld the meds to see what would happen.

Also, when he gets all lethargic and miserable I can take him for a ride in the car and all of a sudden he's alert and doing much better. Needless to say we spend a lot of time everyday driving around.

By Mary556 On 2016.06.27 13:58
Yes, my PWP was always more alert before her first dose of C/L-dopa in the morning. When my Dad was in hospital last summer, he would ask me to put Mom on the phone during that short interval of time so she would be most like herself, before she would get all groggy. I believe it was specifically Sinemet that caused sleepiness for my mother. Her neurologist had prescribed 2 pills x 3/day. I asked if we could try giving her 1.5 x 4 and he agreed; that helped with side effects. when we went to 1 pill x 6 /day last summer, that seemed to be the best spacing for my mother. Her PCP noticed the difference in her alertness.
This might not be the best way of dosing for a PWP who needs the kick of a larger amount at a certain time.

By flowers12 On 2016.06.27 14:55
It's so darn hard to know. He's been on 2 1/2 C/L-dopa 3 times a day for while. Last month the Neurologist said to try 2 pills 4x day to help his freezing. He said if it didn't work go back to the 2 1/2 3 x day. Well, it helped his freezing but then he couldn't talk as well. So, we went back. We've tried different doses at different times and nothing really helps the grogginess once he takes the pills. I'm just getting so down. The doctor has always said we could play around with the dosage and times per day to see what works. I'll ask him if we could try 1 pill 6 x/day. Who knows, it might work for my hubby too. Anything is worth trying at this point. I am very lucky though that if I take him for a ride in the car he becomes much more alert.

By Mary556 On 2016.06.27 16:07
Dear Flowers, we are tired from all this math. If you went to 1 pill 6x/day, you would be decreasing your husband's overall dose. (my Mom's total /day was 6 overall, but your DH is 7.5 or 8). Giving his usual total amount at more frequent intervals is something you could ask about.
Sometimes my Mom's neurologist wanted to increase her total to more than six but that resulted in confusion for her as well. She would forget how to put her feet on the stairs, how to get into her shower, etc. But she was not as stiff at the higher amount. It is a trade off.
I wonder what it is about being in the car that perks your husband up.
Prayers for you both.

By brainstorm On 2016.06.27 23:44
Seems like when the med peaks in his body is when he feels lethargic. I am assuming he is taking normal release carbidopa/levodopa. I would ask the neurologist about trying sinemet CR, which is a controlled release formulation, which actually has just a little less med and it dose not have as big a peak dose as the regular sinemet. Depending on your husband's age it may work better. It has been found that controlled release works better in the elderly who have progressed in their symptoms. Hope this helps.

By flowers12 On 2016.06.27 23:55
Brainstorm, is the sinemet CR the same as the extended release? We tried the extended release two years ago and didn't think it was effective. My hubby is 75. Do you think we should try the extended release again? I just never know how long we should try a new dose before giving up on it. It just seems like if he's better without the meds in the morning that something is not right.

By Maddie52 On 2016.06.28 15:47
Hi Flowers12,
I can relate so much to your post. My husband is best first thing in the morning after not having any pills since bedtime the previous night. He can actually walk some in the morning. By later in the afternoon he cannot walk and his cognition is much worse and I usually have to use the wheelchair to get him back to the bedroom.About 5 weeks ago we did a med change but I can't say it is having any beneficial effects. The Dr. added 2 more Sinemet ER and we reduced the fast acting by about 1 and 1/2 pills throughout the day. The thought was that perhaps adding more ER would even his response to the meds out throughout the day.
I am meeting with the Dr. alone next week and letting her know that things aren't really better and in some times are worse.
This disease is a constant learning, adjustment process and as time goes on it seems that the adjustments have less positive effect.
My best to you and everyone on this journey.

By brainstorm On 2016.06.29 00:27
Flowers, It's worth trying again for at least two weeks. If he is slower in moving in the am, then you can even give him 1/4 of regular Sinemet about 1/2 hour before the extended release just to get him going. And yes, controlled release is the same as extended release; for generics they use ER, while the brand uses CR after the name. It is really trial and error at this stage assuming he has had PD for some years.

My mother who lived to 91.5, used to be on regular sinemet for a number of years. Then she started falling asleep at breakfast time after she had showered and dressed. Her neurologist made this change and she was much better after it, and remained on this regimen until she passed away.

By Mary556 On 2016.06.29 12:01
brainstorm, I have been wanting to thank you. You had given similar advice to somene else at this forum a year or so ago. At the time I did not have Sinemet CR or ER on hand for my Mom, but after reading what you wrote about having the med more evenly spaced for older patients, I started giving smaller doses of her regular C/L-dopa at more frequent intervals (with her neuro's approval). It did help with my mother's alertness when we made that change. It was only two weeks before my Mom had a sudden PD complication that landed her in hospital and hospice, but those were two happy weeks when she was not so sleepy all the time. Mom took a ride around the block in her chair, gazed at the brilliant colour of our favorite red maple tree, sang with us, talked with us, prayed with us. Those happy memories are a great blessing to me. I am grateful to you for coming back here to share your expertise and wanted you to know.

Flowers, I hope the CR or ER may help for your dear one if you try again. Prayers for both of you.

By flowers12 On 2016.06.29 15:06
Brainstorm, thank you for the suggestions. I will ask the neurologist about trying the ER again and see what we can come up with. I wish I was better at making notes about all the different meds, dosage and schedules we've tried over the last 8 years. It's so overwhelming having to do everything for him now and I feel I just can't keep up. I don't always take the time to help him brush his teeth and when he goes every 3 months to get his teeth cleaned the hygenist always points out how bad they are. She should walk in our shoes for week and see how much time and energy she has.

By brainstorm On 2016.07.07 03:17
Mary, thank you so much for your kind words. I am glad that you were able to have good memories of those two weeks. Mum's been gone 3 years and 1 month, but I remember the good times so much more than the bad times.

Flowers, you may get a different response and hopefully better response, the second time around. I used to keep a time log book for Mum in which I noted her vitals - blood pressure, and when necessary her temp, and oxygen levels; plus her meds and dosage, and how alert she was. It helped a lot. It is very overwhelming for one person to take care of everything. I had to get some part time help to help with chores around the house while I took care of Mum, and at time they also helped with caregiving. You are in my prayers through this journey.

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