My PD life is confusing - this is not easy. How do I accept it?
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.
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.
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.
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,
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.
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. 😃
Thank you!
I just thought I would share this. I accidently picked up a toothbrush that is for children. It was heavier and fat. My spouse loved. He said it made him not shake as badly when brushing his teeth. I know that their is alot of DME that are not covered by Medicare. Hope it helps someone!
I think you should specify "symptoms". My most troubling are mental or psychological symptoms, as opposed to physical symptoms.
I try to treat all of my mental...my brain episodes... the same: deep breathing, listening to music I can relax to, as well as music I dance to, singing outloud, forcing myself to do physical work when my apathy has me stagnating and worrisome, and just plain sleeping. With a combo of these I can usually pull myself out of a deep depression, including being very suicidal, or an anxiety attack that has me screaming and yelling at someone (and temporarily HATING them). Fixing my BRAIN is fixing a part of my body. Yes, I can do things to fix my brain. And with a lot of puching myself, I can break a period of apathy.
Nice video.
@bruizersmom
I appreciate you sharing how you deal with the emotional aspects of PD. You have developed some great coping strategies that are working well for you.
In looking at your profile, I see that you have numerous health conditions. If you are comfortable sharing more, I wonder how you developed these great coping mechanisms. Have you always been creative in finding ways to heal?