Fluctuating PD Symptoms

Hi, @lagiaconda. It sounds like you are feeling bewildered yet learning about the reality of Parkinson's since your diagnosis.

I'd love for you to meet @hopeful33250 @sillyblone @jeffwillapa @sherryallen, who may have input on your questions about how far into the disease they or their loved one with Parkinson's had to take drugs to manage symptoms. They may also be able to speak to whether it's the norm for Parkinson's symptoms to come and go.

You mentioned you take no medications for Parkinson's at this time. Are you finding any non-medication tools that help you when you experience symptoms, @lagiaconda?

Hello @lagiaconda

I can certainly understand your concern about your symptoms and the need for medication. I was diagnosed after many years of symptoms including gait, balance and coordination problems. Once I began to take Sinemet, my symptoms improved greatly, and I was thrilled with the results.

To some extent, the symptoms of PD can come and go. My symptoms are worse when I'm overly tired or stressed. A healthy lifestyle is most important. The combination of medication, along with a regular exercise are important ways to keep disability at-bay.

You say that you are learning to manage the symptoms, however, you are also saying, "other days I nearly fall several times daily..." Falls are concerning. Have you discussed this with your neurologist?

Many thanks for your thoughtful response, Lisa!

Truth is I don't know if my newish behaviors (six months) are helping symptoms or not since I don't have much to compare them with; thus, my question about when others began taking meds. However, I usually feel quite well with the exception of my ongoing anxiety and fear about what awaits me.

I have an excellent neurologist but he's not open to ANY treatment that's not FDA approved. He didn't IN THE LEAST support my investigation into stem cell therapy, nor is he open to how my naturopathic doctor strongly recommends a lifestyle approach, including dietary changes, increased exercise, and more social interactions. The protocol requires a rather disciplined commitment to adhere by their guidelines, but to me it is little sacrifice if I see positive results. I think only time will tell, since I don't know how to gauge my progression compared to others with the disease.

Thank you!

Hello Teresa @hopeful33250!

I appreciate the time you've taken to respond to my question. I ask you to refer to what I wrote to Lisa Lucier.

I, like you, also notice my symptoms worsen with fatigue and stress. Thank you.

The "near falls" almost surprise me more than anything, but you are correct--they are concerning. I have two family members who fell, hit their heads, went into comas, and then died. 🙁 . I will discuss this with my neurologist when next we meet. In the meantime, I will be extremely mindful of how I move. I need to be patient with my slower movements!

Thank you again!
lagiaconda

Hello @lagiaconda. I just wanted to say that your post inspired me. I am a caregiver. I am so gtateful for others who understand. My main suggestion is to write things down. This movement disorder is difficult at best. I give kudos to anyone who suffers from Parkinsons. Stay informed. I would also say join the Parkinsons Association. Find out if there is a program in your area that has a program for working out that is specifically for Parkinsons. Maybe the YMCA. Continue to ask any question that you need reassurance for. Take care and be strong.