1. < Parkinson's Disease
Profile picture for johnnyvsn

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 jflamini
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.

Jump to this post

@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

REPLY
Profile picture for kshansen
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.

Jump to this post

@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.

REPLY
Profile picture for esther589
esther589 | @esther589 | 6 days ago
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.

Jump to this post

@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.

REPLY
Profile picture for esther589
esther589 | @esther589 | 6 days ago
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
Yes. Buscapena really helps. (Spanish med) But it may be the same in English.

REPLY
Profile picture for windyh
windyh | @windyh | 6 days ago
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 I do find that the Parkinsons exacerbates my IBS - this may be because my tolerance in dealing with stress is so greatly reduced

REPLY
Profile picture for goatgirl28
goatgirl28 | @goatgirl28 | 6 days ago
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

Jump to this post

@jflamini Wonderful quote from your wife!

REPLY
Profile picture for dodeebug
dodeebug | @dodeebug | 1 day ago
In reply to @kshansen "@lisalucier Thanks for the quick reply! I would welcome anyone who can offer some help or..." + (show)
Profile picture for kshansen @kshansen

@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.

Jump to this post

I can agree with this problem. Believe me it is the Parkinson. I will be talking and just stop and grasp for a word. It seems to be hanging in mid air.

REPLY
Profile picture for sunnyduckel
sunnyduckel | @sunnyduckel | 3 hours ago

Yes, I also definitely attribute my lack of recall to Parkinson’s Disease. Also, if someone interrupts me while I’m trying to ask a question, I’m totally confused and can no longer remember what I was saying and/or my train of thought. It’s one of the most frustrating symptoms I endure!

REPLY
Please sign in or register to post a reply.