Parkinson's and a Spine of Steel

 

Day 2 on a ½ pill of Sinemet.  For 4 weeks I have put off starting medicine for Parkinson’s. I asked the Parkinson’s Community on the Parkinson's Foundation web site a question- is it better to wait to start Sinemet?  Anna, from the Foundation's helpline gave me a suggestion of a great article to read What's Hot in PD? When should you start medication therapy for Parkinson’s disease? 

 The answer seems to be- no -waiting doesn't help make the medicine's use last longer.  (I also found myself writing, in a reply post- an emotional post, while I was crying, about how starting to take it made it seem like I was accepting that I have Parkinson’s and I am not ready to do that yet. I also spoke about my fear of having side effects, especially hallucinations and bad dreams with the medicine.

Anna said it is not common for people on low doses to have hallucinations or people just starting off on medication to have that problem either. Should I call it a problem? I believe that words have power so I'll call it my possible adventure to come.

When to start taking medication is a common question, I found. 

Day 2 and how do I feel? First Day I felt a tad nauseous. Second day I drank a whole glass of water with the ½ pill and didn't feel bad.  Didn't feel better either. 


First day Steven and I tried taking a walk to see if I would feel less stiff. I didn't. I still feel like a rod is shoved up my back. Many years ago, my dad told my mom that I have a Spine of Steel.  He meant it as a compliment.  I never thought it was true but now... it feels literally true.  I'm thinkin' maybe now I need it to be true in the way he meant it. Walking with joy again is part of my reasons for actually starting to take this medicine.

The Neurologist's instructions are to take the pill ½ hour before a meal or an hour after a meal.

She is slowly starting me off. 1/2 pill at 8 am for 5 days, then 5 days of a ½ pill at 8 am and at 1pm. Then 3- ½ pills- 5 hours apart, for 5 days.  It keeps growing until I am taking 3 whole pills 5 hours apart a day. At least that's her plan. I hate taking medicine and don't usually need much to do the job. So, I am hoping to stop at ½ pill 3 times a day.  We shall see.

Anyhoo, that's what's happening in my Parkinson's journey today,

Hope you are having a splendid day

Nancy

Footnotes from Corrine

felted plaster cast by Nancy

One of the hardest things about living so far away from you Nancy is being able to help in those small quiet ways. A gentle walk, a shared cup of tea, sitting in silence or brainstorming crazy art ideas (oh boy did we have some crazy ideas lol).  

This is for you Nancy

I think you will really enjoy her take on things and her latest entry is about timing your meds.

Comments

  1. Thanks to you, Nancy, for having the courage to share your journey. The specific details about exercise and medicine should help many. And thanks to Corinne for creating the blog.

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  2. This sounds a lot like how my mom started on her meds. Her dosage is still pretty low a couple of years into her journey, and the meds have helped a LOT in returning her to a status quo more like she knew before PD moved in.

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  3. Raw and real...Thanks for sharing your reality. LOVE the felted feet! You are such a creative genius. That is certainly a trait that serves in life, particularly in challenging situations. I was sitting by the river recently, crying, processing, and I heard (thought) the words: "Cry as much as you need to. Laugh as much as you can." Later I heard, "You are loved" amended to the end of the phrase. Don't know exactly why I am sharing that, but there it is. Maybe I find it comforting to have permission to cry, and a reminder to laugh. A hug from the Universe. Love you.

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  4. Thanks for this , I am on Madopa(Levadopa) and Propanolol and side effects seem to be tiredness and dreams

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