My Top Tips for a Newly Diagnosed Parkinson’s Patient

Samantha Felder avatar

by Samantha Felder |

Share this article:

Share article via email
newly diagnosed

Dear new Parkinson’s patient (aka Parkie),

Welcome to your new lifelong community. It’s sort of like you are marrying the disease.

“Do you, new Parkinson’s patient, take this disease to be your (maybe not one and only) condition?”

“Sadly, I do, until death do us part.”

When you’re newly diagnosed, this can be a scary time full of unanswered questions. That is where I come to the rescue. In my 10 years of living with Parkinson’s, I have learned a lot, and I would like to pass along some of my knowledge to you.

Sharing your diagnosis

Don’t feel pressured to tell people about your diagnosis — tell them whenever you feel ready to do so.

In my situation, I had received my diagnosis the day before Thanksgiving, and with over 50 family members gathering for the holiday, I felt it was imperative that I tell them right away so I wouldn’t have to keep repeating myself.

But when it came to telling my college classmates, it took me a few months to tell all of them. I’m glad I eventually shared my diagnosis with them because it shed some light on why I had been acting differently that year.

Exercise

Exercise, exercise, exercise! I’ll admit I’m not the best at this, but please know that our bodies can still do powerful things. You have to find the type of exercise that works best for you and ensure it’s something you’ll keep up with.

I know it can be tough to work out on days when your body is not cooperating, but we can still benefit from the effects of exercise and movement. My favorite exercises are cycling on my trike, walking, Zumba, Rock Steady boxing, and dancing, including tap, ballet, and jazz.

Support system

Everyone needs a support system, whether or not they have Parkinson’s.

I find it helpful to have two groups of friends. One includes people with Parkinson’s who I can talk to about everything because they know exactly what I’m going through. The other group includes friends that knew me before my diagnosis. They treat me exactly the same now as they did before I knew I had Parkinson’s.

Just remember the Girl Scouts adage, “Make new friends, but keep the old,” and you will be golden.

Medication

One final piece of advice is that it is extremely important to make sure you find the right medication and dosage for you, and that you are aware of the potential side effects.

For example, some carbidopa-levodopa medications can cause nausea if not taken as prescribed. One of the drugs I currently take can trigger impulsive behaviors, leading some users to compulsively shop, gamble, or overeat. Unfortunately, I had a gambling addiction and thought nothing of dropping $200 in a weekend.

“… [F]or better, for worse, for richer, for poorer, in sickness and in health, until death do us part.” These words may reflect not only your wedding vows but also your relationship with Parkinson’s, at least for now.

There are good days and bad days, days when you laugh and days when you cry, days when you see a beautiful world and days when you ask, “Why me?”

But to quote actor and Parkinson’s awareness advocate Michael J. Fox, “Acceptance doesn’t mean resignation—it means understanding that something is what it is and that there’s got to be a way through it.”

There is — I’m proof of that. Embrace the shake.

***

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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Bell Lex avatar

Bell Lex

Thank you. At day 3 of my diagnosis I recognize theses as wise words. 😊

Reply
IDALMIS SANCHEZ avatar

IDALMIS SANCHEZ

Thank you sooo much for the encouragement. Im 51, diagnosed a few months ago and still struggling accepting the diagnosis

Reply
RAY BECK avatar

RAY BECK

Progressive heavy weight training works for me. It stimulates the dormant muscle cells.

Reply
Nayna Kotecha avatar

Nayna Kotecha

Thank you for sharing your journey. I was diagnosed 4 years ago. I liked your tip about having two sets:of friends. Those you knew before and know your condition and your Parkie friends. I am desperate to find Parkview friends who I can befriend and share my journey. How do you find them? I was told there are local groups which includes ALL at various stages in their condition. I feel scared to join such groups as I am scared of the future.

My virtual “Parkie Friend” help me. I feel so lonely.

Reply
Beth T Browne avatar

Beth T Browne

Just read your info. Thanks for sharing.
I was diagnosed a year ago, but we believe I had it a year before, as I had sleep problems, and my right hand shook badly at times, which I thought was too much thyroid. It was my thyroid doctor a year later (a new one) who assured me it was not thyroid and suggested I see a movement doctor.
No one in my family has had this disease as far as I can find out. Being 83 when diagnosed, just seems weird to me. I am a 28 yr breast cancer survivor. I have lung issues due to whooping cough when 2. They have gotten worse. I discovered three years ago I have a leaky heart valve. I have always had high blood pressure since my 50’s and always been thin. Worked out faithfully for 20 yrs. Hard to do now. Can’t take the drug as it make me so nauseous I could not eat, and now down to 93. So, feeling bad I am on nothing to help. Changing doctors. Hard to know if the first one was much help. Have no PD people groups near me. Been confined due to COVID so looking forward to getting out. Trying to keep my spirits up, and find my faith helpful. Just wish I could find something to let me sleep more then 4 hrs.

Beth

Reply
Pierre Russell avatar

Pierre Russell

Just got diagnosed 3 months ago. Thanks for any helpful info.

Reply
Ivan Wood avatar

Ivan Wood

Thank you for your post. A very real and supportive post. Good sound advice. I found out 2 weeks ago. I lost my hope for the first week. But I eventually rediscovered it. I really do hope that the Neurologists and Scientists can help us soon.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.