Living with Parkinson’s – Page 4

“She stood in the storm and when the wind did not blow her away, she adjusted her sails.” Elizabeth Edwards

A few months after I was diagnosed with Parkinson’s, I crashed…completely. Initially, I had taken the news rather well and felt that nothing had changed. I went about my life and my job as though I could still do it all. It was ‘all good.’

My body said otherwise.

By the time I decided it was time to see the doctor, I was physically, mentally, and emotionally exhausted. My bloodwork was crazy. Anemia, low blood pressure, irregular heartbeat, etc. made the simplest of tasks seem exhausting. I was not coping well physically or emotionally.

My doctor called it ‘Adjustment Disorder.’ This made perfect sense. It could be called Acceptance Disorder, Acknowledgement Disorder, Adherence Disorder etc. Nevertheless, I wasn’t doing well at any of those things. I had developed a chronic, neurodegenerative disease for which there is no cure and no treatment to slow the progression. Yet, I expected my life to continue as though everything was normal. (As I mentioned in The Telling, I tried to downplay and make light of PD…not the best idea!)

My doctor put me on a medical leave of absence from work. I used this time to adjust. Not easy. Eventually, I practiced some much-needed self-care and I began to gather my team of professionals to help me deal with the many facets of this disease.

It took time, four months to be exact, to build my system back up to working order, and even then I was only able to return to work for half days.

I think I will always have Adjustment Disorder. But I think I have learned to listen to my body and recognize when I need to give myself a break.

To learn more about Adjustment Disorder, click here: Mayo Clinic Adjustment Disorder

“Diagnosis is not the end, but the beginning of practice.” Martin Fisher

May 5, 2017: Diagnosis Day.

I had an appointment with my neurologist before heading to work. I had been seeing her for just over two years because I was having some weird things going on in my body and I needed answers. At that time, my symptoms included; tremors in my left hand, stiffness, rigidity, shoulder/arm pain, swallowing difficulty, mild speech issues, trouble sleeping, small illegible handwriting, and loss of smell. And if you google Parkinson’s symptoms…like I did…this is what comes up; Ten Early Warning Signs of Parkinson’s Disease

I scored a solid 7/10 on a test that I would have preferred to fail.

At my first appointment in 2015, she said,

“I can tell by looking at you that you don’t have Parkinson’s.”

Phew! Everything that I had read and researched pointed a very straight arrow at Parkinson’s but she was the neurologist…she would know for sure right? Regardless, we still needed to figure out what was going on with me.

And so began a number of other tests, MRIs, X-rays, CT scans, ultrasounds, and nerve conduction tests. We ruled out MS, brain tumors, and spinal tumors. And we confirmed arthritis in my neck and a small tear in my rotator cuff.

Two years later, on that beautiful sunny May morning, I sat in her office listening to her change her mind, “Well, I think I can say that you have Parkinson’s Disease. You are 49 so technically you have Young Onset Parkinson’s Disease or YOPD.”

She talked about starting me on the lowest dose of Sinemet (carbidopa/levodopa).

I said, “okay.”

She said, “You won’t die from it. You’ll die with it.”

I said, “okay.”

She said she would see me in 3 months.

I said, “okay.”

I left and called my husband Garth.

We said, “okay.”

Neither one of us was truly surprised, maybe even somewhat relieved to finally be able to put a name to these problems. However, it still hit hard when I heard those confirming words. If I went home I would have cried the day away, so I went to work.

I put on a pretend happy face, and I didn’t tell anyone else for over two weeks.

I couldn’t.

I dreaded the thought of people feeling sorry for me.

I still do.

Pondering PD

Category: Living with Parkinson’s

Adjustment Disorder

Okay.