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

Thank you!! We’re fairly new at this.
We love your attitude and jatonlouise’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: “That’s enough.” I see balance/walking/getting out of a chair or bed issues every day. Wouldn’t more PT be good?
Thankyou!

Beautifully written and very True. Thank you!

@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!

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! 😉

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 doesn’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.

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

My main issue is freezing and hesitation when walking. I know that some use it for tremors. So sorry, but I can’t really help with your question.

I appreciate the information you have provided, @21amy, especially about the suggestions about the use of the PD medications. I see that you use the inhaler for freezing. Does it help with other symptoms as well?

Hi. I have used the Inbrija Inhaler a number of times when my Rytary is just not taking care of my symptoms of PD. At first I did not seem to get any relief or improvement in my symptoms. (The main symptom that I am having trouble with is freezing. ) The last few times that I have used the Inbrija I have noticed that sometimes it helps with my freezing and sometimes it doesn't. It can be a little difficult to use- it causes me to cough so I don't get the full effect of the medication. But as I am able to use it better and it does seem to be helping more. If it is going to work it kicks in within minutes and seems to last around 30 to 45 minutes. I do not know why it help sometimes and not other, but it is very frustrating. It would be nice if you could predict if it would help and how much if would help. But than what is predictable about Parkinson's. Another thing that I try if the Rytary is not working well is crushing a Sinemet (I was on Sinemet before the Rytary) and diluting it with a small amount of carbonated beverage, such as coke. It has to be a carbonated beverage. This also sometimes works and sometimes doesn't. This was suggested to me by the YOPD neurology specialist that I see at Mayo Rochester. I did talk to the specialty pharmacy that I get the Inbrija from and they said that if I am going to try using both, to wait at least an hour between using the Inhaler and using the crushed Sinemet. Hope this information is useful to some of you. If you have any questions or comments, please feel free to share with me.

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