1. < Parkinson's Disease
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My Parkinson's life is so confusing - this is not easy.

Posted by johnnyvsn @johnnyvsn, Oct 27, 2024

I was officially diagnosed with Parkinson's May of 2019. I have been taking Rytary since diagnosis and can say it really does help me feel "normal", but just for windows of time. Sometimes the windows lasts a very short time, sometimes longer. I am not as sharp minded as I used to be. I just don't understand how my body can feel so bad a lot of the time, then feel normal at other times. Does anyone else struggle with accepting this as just the normal life of a Parkinson's sufferer?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Profile picture for goatgirl28
goatgirl28 | @goatgirl28 | Jun 12 1:58pm
In reply to @jflamini "The reality is the Sinamet is not a perfect solution. It takes time to absorb in..." + (show)
Profile picture for jflamini @jflamini

The reality is the Sinamet is not a perfect solution. It takes time to absorb in your body and then may wear off before the next dose is due. Try to monitor your doses to determine when its most effective and plan you activities accordingly. In my case I try to take my first dose on an empty stomach because it is sometimes slightly more effective for me. But if that upsets your stomach, take it with a meal. My meds take about 60 minutes to be most effective so if I have a social event I time that dose accordingly. It's not a perfect science but work with it to get the best outcome for you. My wife also has Parkinson's and I live by her quote, Don't wait for the storm to pass, learn to dance in the rain.
Best wishes, Joe

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@jflamini Wonderful quote from your wife!

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windyh | @windyh | Jun 12 6:46am
In reply to @kshansen "Does anyone else have sever cramping in the bowels mainly in the before noon time? If..." + (show)
Profile picture for kshansen @kshansen

Does anyone else have sever cramping in the bowels mainly in the before noon time? If talking about bowel pain or problems is not considered proper talk let me know. I am not on any medications at this time and think my next doctors appointment is about six months away. Basically just on some exercise things two or three times a day.

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@kshansen I do find that the Parkinsons exacerbates my IBS - this may be because my tolerance in dealing with stress is so greatly reduced

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esther589 | @esther589 | Jun 12 6:45am
In reply to @kshansen "Does anyone else have sever cramping in the bowels mainly in the before noon time? If..." + (show)
Profile picture for kshansen @kshansen

Does anyone else have sever cramping in the bowels mainly in the before noon time? If talking about bowel pain or problems is not considered proper talk let me know. I am not on any medications at this time and think my next doctors appointment is about six months away. Basically just on some exercise things two or three times a day.

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@kshansen
Yes. Buscapena really helps. (Spanish med) But it may be the same in English.

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esther589 | @esther589 | Jun 12 1:56am
In reply to @hopeful33250 "@esther589 Cognitive issues, as you described, that result in memory or focus issues are very frustrating...." + (show)
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@esther589

Cognitive issues, as you described, that result in memory or focus issues are very frustrating. I am glad to see that you take someone with you to appointments; that is wise! How long have you been experiencing these issues? Have you considered being evaluated by a neuropsychologist? Such an evaluation might provide information about medications or other therapies that could help you.

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@hopeful33250
I saw a neurophyscologist last week. She said that it's an issue with executive function and she would talk to my neurologist about it. I see the neurologist next month.

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1 reply
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kshansen | @kshansen | Jun 11 5:10pm
In reply to @hopeful33250 "@esther589 Cognitive issues, as you described, that result in memory or focus issues are very frustrating...." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@esther589

Cognitive issues, as you described, that result in memory or focus issues are very frustrating. I am glad to see that you take someone with you to appointments; that is wise! How long have you been experiencing these issues? Have you considered being evaluated by a neuropsychologist? Such an evaluation might provide information about medications or other therapies that could help you.

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@hopeful33250

The doctor that diagnosed me is a neurologist with 20 years experience, would that be a difference from a neuropsychologist? Just went to one of his web pages and do see this shown:
Subspecialties: Neurophysiology

As for taking someone with me, wife has decided that she did not feel I should be driving so she takes me to all appointments.

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jflamini | @jflamini | Jun 11 5:01pm
In reply to @kshansen "Does anyone else have sever cramping in the bowels mainly in the before noon time? If..." + (show)
Profile picture for kshansen @kshansen

Does anyone else have sever cramping in the bowels mainly in the before noon time? If talking about bowel pain or problems is not considered proper talk let me know. I am not on any medications at this time and think my next doctors appointment is about six months away. Basically just on some exercise things two or three times a day.

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@kshansen "potty talk" is okay by us : ) For me, I try to drink plenty of fluids. I also start my day by drinking six ounces of warm water mixed with a little salt and one or two ounces of lemon juice on an empty stomach and then try to wait at least 30 minutes before I eat breakfast, sometimes up to an hour. It doesn't act immediately but you may get some movement later in the day. Try it for a week to see if it helps. Also, your doctor can advise you on the impact Sinamet will have but I believe it helps with many types of movement, not just legs and arms but also bowels.
Best wishes, Joe

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Profile picture for jflamini
jflamini | @jflamini | Jun 11 4:48pm

The reality is the Sinamet is not a perfect solution. It takes time to absorb in your body and then may wear off before the next dose is due. Try to monitor your doses to determine when its most effective and plan you activities accordingly. In my case I try to take my first dose on an empty stomach because it is sometimes slightly more effective for me. But if that upsets your stomach, take it with a meal. My meds take about 60 minutes to be most effective so if I have a social event I time that dose accordingly. It's not a perfect science but work with it to get the best outcome for you. My wife also has Parkinson's and I live by her quote, Don't wait for the storm to pass, learn to dance in the rain.
Best wishes, Joe

REPLY
1 reply
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 11 4:32pm
In reply to @esther589 "I always used to be very organized. I ran my own business with two locations. Now..." + (show)
Profile picture for esther589 @esther589

I always used to be very organized. I ran my own business with two locations. Now I get confused about what day it is and I often turn up for appointments on the wrong day or at the wrong time. I have all my commitments on Google calendars but I still get confused. This is a big frustration.
I have to make sure that I take someone with me into doctor appointments because I don't always understand what they are telling me.
Sometimes I wake up in the morning and I'm not sure where I am. We have moved a few times in the last ten years but I'm not even sure which Country I'm in. We have lived in the UK, the US and Spain during the last forty years.

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@esther589

Cognitive issues, as you described, that result in memory or focus issues are very frustrating. I am glad to see that you take someone with you to appointments; that is wise! How long have you been experiencing these issues? Have you considered being evaluated by a neuropsychologist? Such an evaluation might provide information about medications or other therapies that could help you.

REPLY
2 replies
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kshansen | @kshansen | Jun 11 12:35pm
In reply to @lisalucier "@kshansen - no problem at all talking about bowels. This is all part of how other..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

@kshansen - no problem at all talking about bowels. This is all part of how other members here can support you. Tagging @kshansen @jtes @jflamini @southwest may have some ideas for you about Parkinson's and how to manage severe bowel cramping.

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@lisalucier
Thanks for the quick reply! I would welcome anyone who can offer some help or support of any kind.

I'm thinking it would be difficult for someone not having these problems to understand how difficult it can be to deal with it. I also know I seem to have major problems at times putting things in words. Not sure if that is because of the Parkinson's or just my problem explaining things I may not know the proper/correct terms to use for it.

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1 reply
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Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 11 11:12am
In reply to @kshansen "Does anyone else have sever cramping in the bowels mainly in the before noon time? If..." + (show)
Profile picture for kshansen @kshansen

Does anyone else have sever cramping in the bowels mainly in the before noon time? If talking about bowel pain or problems is not considered proper talk let me know. I am not on any medications at this time and think my next doctors appointment is about six months away. Basically just on some exercise things two or three times a day.

Jump to this post

@kshansen - no problem at all talking about bowels. This is all part of how other members here can support you. Tagging @kshansen @jtes @jflamini @southwest may have some ideas for you about Parkinson's and how to manage severe bowel cramping.

REPLY
1 reply
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