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.

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esther589 | @esther589 | Oct 20, 2025

I also find it confusing. Some days I think I'm doing really well with it and other days can be an exhausting struggle to get through.
I follow all the advice I am given but it seems that no two people share exactly the same experience.
I wish you better days.

REPLY
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cheryllynn1003ky | @cheryllynn1003ky | Feb 19 8:13pm
In reply to @hopeful33250 "Hello @johnnyvsn I'd like to join @lisalucier in welcoming you to the Parkison's support group on..." + (show)
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Hello @johnnyvsn

I'd like to join @lisalucier in welcoming you to the Parkison's support group on Mayo Connect. You make some valid observations about PD. It is very common to have "off-times" with PD. It is often associated with the wearing off of medication. Have you noticed how long after taking your medicine that these off-times occur?

What you say about movement is so very important. In order to feel your best with PD, exercise and medication are the best combination. I always say that PD is not something that you can take laying down. I would encourage you to find an exercise routine that you can follow several days each week. The more you exercise, the better you will feel.

A lot of YMCA facilities will have "Pedaling for Parkinsons." This is a group exercise program done on stationery exercise bike. There is also Rock Steady Boxing which many PD patients enjoy, and it helps with symptoms. The important thing is to keep yourself as strong as possible. In addition to these exercise programs, you can also find free exercise videos on YouTube. Just go to YouTube and search for exercises for PD and you will find many that can be done standing or sitting.

Do you have a regular exercise routine?

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@hopeful33250
my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or lay down, what is happening to me, most days medication wears off before next dose, I'm on Crexont 4x a day, i just don't know, is it possible to have more of the good days?

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2 replies
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southwest | @southwest | Feb 20 5:25am
In reply to @cheryllynn1003ky "@hopeful33250 my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or..." + (show)
Profile picture for cheryllynn1003ky @cheryllynn1003ky

@hopeful33250
my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or lay down, what is happening to me, most days medication wears off before next dose, I'm on Crexont 4x a day, i just don't know, is it possible to have more of the good days?

Jump to this post

@cheryllynn1003ky
I think it is crucial to be getting treatment from a board certified movement disorder specialist, not a general neuro doc or PCP. In my experience I am having to try out various drugs, to see what works for me. No major successes so far, so I am very familiar with the changes day to day, never knowing what to expect day to day or hour to hour.

There are also new drugs coming out frequently, and your doc has to know about them and be willing o go through the approval with insurance.

Exercise is very important. before I was diagnosed I did not understand what was going on with me, and spent literally years on my back all day, in a recliner etc., because I was so tired. It was scary to get the diagnosis of PD, but at least I know what I am dealing with.

I have also learned I have to fight against the fatigue, make myself move and that helps me feel better, on many days. A specialist doc could get you into parkinsons specific physical therapy, I hope it is available in your area.

I found a youtube channel "power for parkinsons" with many exercises I can follow, including exercises in sitting position. I slow down the videos when I can't keep up, or am learning a new routine.

good luck on this journey!!

REPLY
1 reply
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 20 7:49pm
In reply to @cheryllynn1003ky "@hopeful33250 my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or..." + (show)
Profile picture for cheryllynn1003ky @cheryllynn1003ky

@hopeful33250
my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or lay down, what is happening to me, most days medication wears off before next dose, I'm on Crexont 4x a day, i just don't know, is it possible to have more of the good days?

Jump to this post

@cheryllynn1003ky

I am sorry to hear that your PD symptoms are so troublesome. As @southwest said in her post, it is important to consult with a movement disorder specialist.

Have you asked about a referral for a second opinion?

REPLY
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spatase | @spatase | Jun 4 7:24pm
In reply to @hopeful33250 "Hello @21amy I had not heard of this being used as a PD treatment before. According..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @21amy

I had not heard of this being used as a PD treatment before. According to the website, https://www.inbrija.com/, this is an inhaled treatment that helps during off times. It appears that it does not replace Sinemet (carbidopa/levodopa) but is used in addition to it when symptoms are a problem between does of Sinemet.

Is this your understanding as well? Did your neurologist prescribe this? Once you begin this medication I (and many of our members) would be interested in knowing if it is helpful.

Will you post again with any other information about the Inbrija inhaler?

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@hopeful33250 My husband took his first dose of Inbrija today. He has 'fluctuating' off times and when he is off, he suffers from anxiety, nausea, increased tremors and mostly his body thermostat shuts down so he can be sweating on his head, face and groin and his hands and feet and torso can be ice cold. The first dose today he noticed a slight improvement in his body temperature and his hand tremor and his anxiety. We are hopeful this will help him more and more. He can take it up to 5 times per day as needed and he must still take his regular Sinemet as prescribed 4Xday. I hope this helps

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2 replies
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foundryrat743 | @foundryrat743 | Jun 4 7:51pm
In reply to @southwest "@cheryllynn1003ky I think it is crucial to be getting treatment from a board certified movement disorder..." + (show)
Profile picture for southwest @southwest

@cheryllynn1003ky
I think it is crucial to be getting treatment from a board certified movement disorder specialist, not a general neuro doc or PCP. In my experience I am having to try out various drugs, to see what works for me. No major successes so far, so I am very familiar with the changes day to day, never knowing what to expect day to day or hour to hour.

There are also new drugs coming out frequently, and your doc has to know about them and be willing o go through the approval with insurance.

Exercise is very important. before I was diagnosed I did not understand what was going on with me, and spent literally years on my back all day, in a recliner etc., because I was so tired. It was scary to get the diagnosis of PD, but at least I know what I am dealing with.

I have also learned I have to fight against the fatigue, make myself move and that helps me feel better, on many days. A specialist doc could get you into parkinsons specific physical therapy, I hope it is available in your area.

I found a youtube channel "power for parkinsons" with many exercises I can follow, including exercises in sitting position. I slow down the videos when I can't keep up, or am learning a new routine.

good luck on this journey!!

Jump to this post

@southwest The You Tube videos are great! My physical therapist introduced me to the You Tube videos!

REPLY
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goatgirl28 | @goatgirl28 | Jun 5 4:52am
In reply to @21amy "Has anyone used the inhaler Inbrija for freezing. I am going to try it in a..." + (show)
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Has anyone used the inhaler Inbrija for freezing. I am going to try it in a week or two when I receive it from my specialty pharmacy.

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@21amy I use it as my emergency go to when the tremor is causing unbearable pain. It works quickly.

REPLY
1 reply
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 5 8:31am
In reply to @goatgirl28 "@21amy I use it as my emergency go to when the tremor is causing unbearable pain...." + (show)
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@21amy I use it as my emergency go to when the tremor is causing unbearable pain. It works quickly.

Jump to this post

Hello @goatgirl28

I am glad to hear that you have a medication to use when the tremor is causing pain. Is your pain in a specific location?

REPLY
1 reply
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goatgirl28 | @goatgirl28 | Jun 5 4:15pm
In reply to @hopeful33250 "Hello @goatgirl28 I am glad to hear that you have a medication to use when the..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @goatgirl28

I am glad to hear that you have a medication to use when the tremor is causing pain. Is your pain in a specific location?

Jump to this post

@hopeful33250 Intense tremors cause my shoulders, upper arms and, if I try to walk, my hips to lock up painfully.

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esther589 | @esther589 | Jun 6 11:54pm

I share your experience completely and it's good to hear something else say this. It's confusing for me, my husband and friends. This disease is really not what expected at all.

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