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

Thank you!

Hang in there. It is so easy to become overwhelmed. I have decided to do my best to be positive about my Parkinson's. My medications do allow me to live a somewhat "normal" life. At times. It helps to have friends. 😃

I can only speak as a caregiver..What you just posted sounds like my spouse. Good and bad days. Everyday I wake up to a different person. Sometimes good and sometimes not.

Many of you may already be familiar with the Davis Phinney Foundation Parkinson's. They have regular webinars and panel discussions. I thought that many of you might find this panel discussion interesting as a PD patient talks about his journey with PD. Here is the link to the program,

The words you wrote, (My "ON" & "off" times seem so variable) and (when I feel "on" I can do anything) describe me exactly. I lack the skill to put my feelings to words effectively. One reason I used the word "confusing " is I can at times feel so wonderful, then other times feel so feeble and old. It has seemed to affect my cognitive thinking, which is embarrassing and difficult to admit. I think my healthcare provider has possibly found a "livable" medication dosage and schedule. I realize there is no magic cure. Thanks for wording similar feelings.

I was diagnosed with PD 2021. I am now taking 6 meds for the disease. Two were recently added. I can appreciate your frustration w/ the disease. My "ON" & "off" times seem so variable. I feel like I am alternating between tremors & dyskinesia. I feel worse when I have a lot of dyskinesia.
Exercise does help. I do Rock Steady Boxing. I never thought I would be hitting a boxing bag. It feels good. The social aspects of being int this group & getting out interacting w/other people is beneficial. Through my Rock Steady Boxing group I am more aware that there are other people with PD who have other challenges that they are dealing with. When I don't do Rock Steady Boxing I try to do the Zoom Parkinson exercise classes
I also see a therapist & take a low dose of an antideprresant. My therapist is helping w/my attitude of the glass being half full instead of 1/ 2 empty.
PD is a challenge. When I feel "on" I can do anything. When I am "off" it is difficult to move. I am learning that there is no "normal" PD. It is very variable. Good Luck. Try to find the good things in your life.
FYI I had 3 free samples of Inbrija. In the beginning it seemed to help. Later on I felt no benefit. I discontinued it. It would have been very expensive with my medicare plan.

I would like to add one more comment about Inbrija. It is not used if you are having symptoms at the same time every day. It is used if your off times vary from day to day.
Thanks

I appreciate the added information about Inbrija. I will look forward to hearing more about the helpfulness of this medication.

It was prescribed by my neurologist at Mayo Rochester. He is known worldwide for his treatment of Parkinson’s. I should be getting it soon. I will get it through a specialty pharmacy out of Minneapolis. It is for freezing and breakthrough symptoms. I am taking Rytary for my main Parkinson’s med and will use the inhaled medication only as needed. I will update after I have used.

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?