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

Hi, @johnnyvsn, and welcome to Mayo Clinic Connect. Seems like you have a lot of ups and downs with your Parkinson's symptoms.

I'd like to introduce you to @hopeful33250, who has talked about her Parkinson's diagnosis, and also @ronwolf @sisyphus @sherryallen @missbutterfly2be, who may have some experiences with themselves or a loved one feeling normal for windows of time and then feeling bad with Parkinson's. They may have some thoughts on whether this is common with this disease.

@johnnyvsn - have you found anything that helps your body feel better when it's feeling bad from Parkinson's?

The thing that makes me feel the best us moving. Just sitting is not good. Walking around eventually makes me feel much better.

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?

Thanks @hopeful33250. Yes, I regularly walk most every morning, and I walk many times during the day when I feel my body stiffening. The medication usually helps for up to 4 - 5 hours at a time. Sometimes much less.

It might be good to mention this problem to your doctor to see if there is anything else you can do when your meds wear off.

Glad to see that you are walking on a regular basis!

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.

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?

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.

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

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