Is My Parkinson’s Honeymoon Over?

Jean Mellano avatar

by Jean Mellano |

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Parkinson's honeymoon

When I started writing this column, I was having a pity party and was in a bad place. Wanting to reflect positivity, I decided to stop writing until I had a better frame of mind.

Why was I feeling sorry for myself?

More than four years have passed since my Parkinson’s diagnosis. I didn’t realize how good I had it then. I remember that previously, my deteriorating symptoms would cause me to tell myself that if it didn’t get worse, I could handle it. Recently, however, it seems that many of my symptoms, especially the non-motor ones, are worsening.

My balance is worsening such that I feel unsteady when walking in narrow areas with crowds. I frequently cough and choke on my food. I gag when I take pills and supplements. People ask me to repeat myself more often. It seems as though I am slurring my speech. Anxiety frequently visits me, something I never experienced prior to my diagnosis.

I can’t seem to find the right combination of medications, despite working on that for almost two years. Much trial and error have followed, as I test whether it’s better to take my medications before or after a meal, and change or add new medicines. I must be weaned off some drugs, while others must be increased for six to eight weeks to test therapeutic benefit. Another person with Parkinson’s coined the term “tweaking and seeking” to describe this lengthy and frustrating process.

Based on my experiences and what I have heard from others with Parkinson’s, it seems as though we must choose our poison. For example, do I prefer dyskinesia induced by carbidopa-levodopa or bradykinesia, the main symptom for which I take that medication?

About that Parkinson’s honeymoon

A friend mentioned to me that he is considering deep brain stimulation surgery because he feels that his Parkinson’s honeymoon is over. I had never heard the term “honeymoon” related to Parkinson’s, so I did some Googling, wondering if my honeymoon period was also coming to a close.

In general, the first stage of the disease is a honeymoon period that lasts up to eight years, during which patients can live what’s practically a normal life, according to Parkinson Québec. It also is the stage during which treatment is most noticeably effective.

When I started to write about the honeymoon ending for me, I realized that kind of negative thinking wouldn’t help me. Leaving this column unfinished for a few weeks was a good decision. I have come back to it refreshed and with that bad place behind me.

Although my symptoms may be worsening and new ones may be appearing, I refuse to go down without a fight. Speech therapy and an assessment by a therapist certified by Parkinson Wellness Recovery are on my list of next steps. Medical marijuana, which is legal in New York for Parkinson’s patients, is something I also am considering.

It’s therapeutic to have a plan with a course of action, and I now have a renewed sense of hope. My Parkinson’s second honeymoon is just beginning!

Never give up, for that is just the place and time that the tide will turn.” ―Harriet Beecher Stowe

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

PD Stevie Ray avatar

PD Stevie Ray

Great column Jean. I liked the way you ended it on a positive note. Keep writing and keep fighting!

Reply
Jean Mellano avatar

Jean Mellano

Thanks much Steve. Some days more than others, it is easier to be positive

Reply
Sarah avatar

Sarah

Best wishes to you. My mother has Parkinson’s. it is helpful to me to read your well-expressed feelings and experiences. Thank you.

Reply
Jean Mellano avatar

Jean Mellano

Sarah, I hope your Mom is doing okay. Thank you for your words of support.

Reply
Nathalie avatar

Nathalie

I feel the same as Sarah, as my dad has Parkinson’s and has a real difficult time accepting.
I hope they soon find a cure, with all the trials that are going on worldwide.
I love that you try to stay positive.
I keep telling my dad to read but he just can’t bring himself to do it.

Reply
Jean Mellano avatar

Jean Mellano

Nathalie,
I am sorry about your Dad. Knowing this disease, I understand why he may not want to read... the lack of motivation and apathy that go with this disease can be crushing. I wish you both strength to deal with this debilitating disease

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Jim Cooley avatar

Jim Cooley

I have PD. diagnosed 6 years ago.I have found good symptom suppression using Lions Mane and Turkey Tail mushroom extract. I also take CDLD and use cannabis. My symptoms have receeded mostly, I give credit to the mushrooms. Try it, they are cheap and available, none toxic, easy to use and legal. Wont hurt you and may help you. Everyones different.
Good luck

Reply
Jean Mellano avatar

Jean Mellano

thank you Jim for sharing your experience. we all learn from each other.

Reply
Edward Baker avatar

Edward Baker

Hi Jim

Thanks for writing about Lion's Mane and Turkey Tail. I was reading about these just yesterday. Can you tell us what form you have found effective? Are you taking capsules, making tea or cooking them in your food? I appreciate your suggestion and plan to give these a try

E Baker

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Jim Cooley avatar

Jim Cooley

I am taking 2000 mg of both. I try and split it up and take 1000 mg twice a day. They are in capsules, so easy swallow. The brand is RealMushrooms, in BC Canada. I get them on Amazon.

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ChrisO avatar

ChrisO

> Lions Mane and Turkey Tail mushroom extract

What brand and what dose, Jim?

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diane avatar

diane

what is cdld

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Jean Mellano avatar

Jean Mellano

Carbidopa-levadopa, generic version of Sinemet. This is considered the “gold standard” medication prescribed for treating Parkinson’s

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ChrisO avatar

ChrisO

Very good read. Well done, Jean - thank you!

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Jean Mellano avatar

Jean Mellano

Chrism
Thank YOU for reading my article!

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Brenda Jensen avatar

Brenda Jensen

A very good book about Progressing Parkinson’s is by PD patient, Kirk Hall. It is titled “Window of Opportunity “ it is on Barnes & Nobel, Amazon, etc.

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Jean Mellano avatar

Jean Mellano

BRenda, thank you for sharing, I will look into this book.

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Toni avatar

Toni

Hi Jean,
Thank you for the article. Your posts have always been helpful to me. I hope you continue to write as I very much appreciate how personally you share your PD reality.

Reply
toni shapiro avatar

toni shapiro

Hi Jean,
Thank you for your article. I always find your posts very helpful and I am happy that you are writing. I especially like how personally you share your PD story and your detail. You are never judgemental and accept everyone's own reality. I tried writing a comment and 5 rating earlier but for some reason it didn't go through. I hope you get this.

Reply
Jean Mellano avatar

Jean Mellano

thank u so much Toni for your words of encouragement

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toni shapiro avatar

toni shapiro

What are the titles of your articles?

Reply
Jean Mellano avatar

Jean Mellano

Hi Toni

My column is called ‘Slow is the new Fast’

On the home page you should see Columns . Click on that and there should be a pull down of 5 or 6 columns, one of them is mine. When you click on Slow is the new Fast you will see a list of my articles. Thanks for your interest

Reply
Jim Barkley avatar

Jim Barkley

Jim B- At first I thought Parkinson’s disease was a death warrant but I am learning to get over my fear of the unknown with this disease but it is hard

Reply
Jean Mellano avatar

Jean Mellano

Yes Jim, the disease is very hard to live with since there are so many unknowns. Keep moving.

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