1. < Parkinson's Disease

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?

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jflamini | @jflamini | Mar 30 4:38pm
In reply to @eliz722 "I was dx w/PD 2021. I am sure I had it longer but disregarded the early..." + (show)
@eliz722

I was dx w/PD 2021. I am sure I had it longer but disregarded the early non-motor symptoms. I too take a lot of meds. I spend a lot of my time filling pill boxes, dealing w/insurance & physical therapy companies. I am now contacting home health care companies.
I will be starting Apokyn in about 1 week. Any comments abouut it? I have not been on Rytary
Would the person who will be starting Medical marijuana post what type they take& their pro's and cons on it. I am considering using it to reduce stress. My doctor's like the idea of medical marijuana vs taking a prescription medicine. The psychiatrist consdier it "more natural" She finally said to take the CBD w/o the THC. One of my issues w/it is that I can't just take it when I am stressed. I am not going to start it until I have been on the Apokyn for a while. Responses are appreciated

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My wife has been on Apokyn for several years with great results. As you are probably aware it is an injectable medicine so a little inconvenient but well worth it. It is easily injected into a little fat in the abdomen and responds in about ten minutes. If her muscles are feeling tight when we are out shopping, etc she injects in the car and are quickly ready to go. It complements her other medications very well. Best wishes, Joe

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21amy | @21amy | Apr 27 5:54am

I thought that I would send an update on Inbrija Inhaler that I am trying. I have been having a lot of freezing lately and the inhaler is helpful at times but also not always helpful. It seems that is the way it is with PD. What works one time doesnā€™t work the next. I would say it helps 60% of the time. It does help fast, within minutes, so that is great when my freezing is really bad and I am struggling to just stay upright. I wish I had more consistent results with it, but for me it is worth trying when my Rytary is not doing its job. It is a little tricky to get the hang of how to use it. Make sure you inhale slowly and gently to decrease your coughing. Have a glass of water next to you so you can take a sip when your cough starts. Let me know if you have any questions.

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jatonlouise | @jatonlouise | May 4 3:06am

It seems that Parkinson's affects people in very different ways. Your confusion and dismay are logical responses to your situation * as is being a tad angry about your limitations. There are some things that help. One is excercise. Another is to keep a daily log of how you feel and things you've dobe to try to feel better (walking, keeping well- hydrated,, which foods you eat, et . This can help you see where you might be getting the most "bang for the buck"so you can see which things are most helpful to you. Share this info with your doctor so he can consider other things that might improve how you feel. Each of us has a different experience with old mr P, and we just have to keep tinkering with things to see what works best for us. And trading ideas with each other. While we'd all rather not have Mr. P. in our lives, and would like to kick him out permanently, that isn't a ppossibility (yet -- maybe it will be someday). We just have to keep on keeping on, and trying to do things we can and treasuring the good things in our lives. Some days will be better than others. But I'll let you in on my little secret. I believe that when we are born, each of us has a certain nunber of bad days assigned to them. We don't know what that number is. But we do know that every time we have a crappy day, that means we have 1 fewer crappy days ahead of us. AND, because we don't know how nany we were assigned, it might be th
at THIS crappy day could be the LAST one we ever have! So maybe we just have to deal with this one and we're done! šŸ˜‰

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 4 8:23am
In reply to @jatonlouise "It seems that Parkinson's affects people in very different ways. Your confusion and dismay are logical..." + (show)
@jatonlouise

It seems that Parkinson's affects people in very different ways. Your confusion and dismay are logical responses to your situation * as is being a tad angry about your limitations. There are some things that help. One is excercise. Another is to keep a daily log of how you feel and things you've dobe to try to feel better (walking, keeping well- hydrated,, which foods you eat, et . This can help you see where you might be getting the most "bang for the buck"so you can see which things are most helpful to you. Share this info with your doctor so he can consider other things that might improve how you feel. Each of us has a different experience with old mr P, and we just have to keep tinkering with things to see what works best for us. And trading ideas with each other. While we'd all rather not have Mr. P. in our lives, and would like to kick him out permanently, that isn't a ppossibility (yet -- maybe it will be someday). We just have to keep on keeping on, and trying to do things we can and treasuring the good things in our lives. Some days will be better than others. But I'll let you in on my little secret. I believe that when we are born, each of us has a certain nunber of bad days assigned to them. We don't know what that number is. But we do know that every time we have a crappy day, that means we have 1 fewer crappy days ahead of us. AND, because we don't know how nany we were assigned, it might be th
at THIS crappy day could be the LAST one we ever have! So maybe we just have to deal with this one and we're done! šŸ˜‰

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@jatonlouise

I love to read posts that discuss the importance of exercise combined PD meds and a healthy lifestyle. PD can take a toll on an individual both physically as well as emotionally because of the limitations it places on a PD patient's life. Exercise, staying hydrated tend to be beneficial for all aspects of this disorder.

I appreciate your reminder!

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1 reply
rpal | @rpal | May 4 1:18pm
In reply to @jatonlouise "It seems that Parkinson's affects people in very different ways. Your confusion and dismay are logical..." + (show)
@jatonlouise

It seems that Parkinson's affects people in very different ways. Your confusion and dismay are logical responses to your situation * as is being a tad angry about your limitations. There are some things that help. One is excercise. Another is to keep a daily log of how you feel and things you've dobe to try to feel better (walking, keeping well- hydrated,, which foods you eat, et . This can help you see where you might be getting the most "bang for the buck"so you can see which things are most helpful to you. Share this info with your doctor so he can consider other things that might improve how you feel. Each of us has a different experience with old mr P, and we just have to keep tinkering with things to see what works best for us. And trading ideas with each other. While we'd all rather not have Mr. P. in our lives, and would like to kick him out permanently, that isn't a ppossibility (yet -- maybe it will be someday). We just have to keep on keeping on, and trying to do things we can and treasuring the good things in our lives. Some days will be better than others. But I'll let you in on my little secret. I believe that when we are born, each of us has a certain nunber of bad days assigned to them. We don't know what that number is. But we do know that every time we have a crappy day, that means we have 1 fewer crappy days ahead of us. AND, because we don't know how nany we were assigned, it might be th
at THIS crappy day could be the LAST one we ever have! So maybe we just have to deal with this one and we're done! šŸ˜‰

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Beautifully written and very True. Thank you!

REPLY
katrii | @katrii | May 4 3:51pm
In reply to @hopeful33250 "@jatonlouise I love to read posts that discuss the importance of exercise combined PD meds and..." + (show)
@hopeful33250

@jatonlouise

I love to read posts that discuss the importance of exercise combined PD meds and a healthy lifestyle. PD can take a toll on an individual both physically as well as emotionally because of the limitations it places on a PD patient's life. Exercise, staying hydrated tend to be beneficial for all aspects of this disorder.

I appreciate your reminder!

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Thank you!! Weā€™re fairly new at this.
We love your attitude and jatonlouiseā€™s advice.

Q: How important is PT? My husband was advised to go for 10 weeks, 2X/Week. Insurance covered 6 visits in all. He now says: ā€œThatā€™s enough.ā€ I see balance/walking/getting out of a chair or bed issues every day. Wouldnā€™t more PT be good?
Thankyou!

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 5 7:21am
In reply to @katrii "Thank you!! Weā€™re fairly new at this. We love your attitude and jatonlouiseā€™s advice. Q: How..." + (show)
@katrii

Thank you!! Weā€™re fairly new at this.
We love your attitude and jatonlouiseā€™s advice.

Q: How important is PT? My husband was advised to go for 10 weeks, 2X/Week. Insurance covered 6 visits in all. He now says: ā€œThatā€™s enough.ā€ I see balance/walking/getting out of a chair or bed issues every day. Wouldnā€™t more PT be good?
Thankyou!

Jump to this post

Hello @katrii,

I'm so pleased to hear that your husband has been able to get some PT. Has it helped him to move better?
The importance of regular exercise has been proven to be valuable. If insurance or finances are a problem, you might check out the local YMCA in your area to see what exercise classes they might offer for PD patients, even chair exercise classes for seniors. Your local senior center may also provide exercise classes for seniors that would be helpful.

There are also YouTube vides with exercises for PD patients. The important thing is to keep moving. Here is a link to some exercises from YouTube. https://www.youtube.com/results?search_query=exercises+for+pd

There is also a book (and a video) called, Delay the Disease, which also talks about the value of exercise to lessen the disability that can come from PD.

Whether your husband continues with PD or finds an exercise program that he enjoys, it is important that he keeps moving. Will you post again and let me know how you are both doing?

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