Suggestions.. not to say

What Not to Say to Someone with Parkinson’s Disease

[Here is the follow up post, as promised]

Not all people with Parkinson’s disease experience the same symptoms. For example, I am most affected by bradykinesia, poor fine motor skills, incontinence, and fatigue.

I was inspired to write this column based on my personal experiences after I read Sherri Woodbridge’s column, “What to Say to Someone with Parkinson’s Disease.” Most people don’t know what to say and usually have good intentions. However, poorly chosen words can break a person down. Be mindful of how you speak to someone with Parkinson’s. 

“Words can inspire. And words can destroy. Choose yours well.” —Robin Sharma

 1. ‘You don’t look like you have Parkinson’s.’

This is my least favorite comment. Many of my symptoms are unseen. People have no idea how much I am struggling at times to maintain some semblance of normalcy. Most days, I feel shaky and weak, and I am totally exhausted.

A comment like this can minimize the hidden symptoms that are very real to the person with Parkinson’s. Most people do not understand what those of us with the disease deal with daily and sometimes hourly.

2. ‘You are lucky you don’t have tremors.’ Or, ‘Your symptoms could be worse.’

Parkinson’s is progressive and unpredictable. It’s impossible to know where my symptoms might be six months from now, let alone six years from now. Just because I don’t exhibit a particular symptom now does not mean I will never have it. At times, Parkinson’s feels like the sword of Damocles hanging over my head.

3. ‘You look like you are having a good day. Your Parkinson’s must be getting better.’

If I am having a good day with few symptoms, it doesn’t mean that my disease is getting better. There is no cure and no way to heal from Parkinson’s. For me, good days are fleeting and the exception to the rule. A comment like this serves only to remind me that Parkinson’s is progressive.

4. ‘I have the same problem.’

Sometimes, people respond with this statement when I comment about one of my symptoms (choose any of the following):

  • tripping
  • having to sit down when I put on my shoes
  • losing my balance all the time
  • forgetfulness
  • inability to multitask

I think well-meaning people say they have the same issues because they don’t want me to feel alone in experiencing these challenges. After all, they can develop over the natural course of aging. Most people do not understand, however, that I used to be very sharp mentally and was a strong athlete and dancer before I was diagnosed. That makes these symptoms much more glaring for me.

 5. ‘Hurry up!’ Or, ‘What is taking you so long?’ Or, ‘Late, again?’

With Parkinson’s, I have two speeds: slow and slower.

I clearly remember, years ago, watching my Parkinson’s-diagnosed friend putting on her coat or fastening her seat belt. I would think to myself, “Why is she so slow?” Now, I totally understand what she was dealing with.

6. ‘You have to use the bathroom again?’

My late husband always told me my life was ruled by my bladder. No truer words have been spoken, especially now that I have Parkinson’s. I never like to be too far from a bathroom. I found a smartphone app called Flush that displays public restrooms nearby, and I never leave home without it!

7. ‘Please fill out this form and print legibly.’

Doctor’s office staff, please take note of this one. I cringe whenever I see a new doctor and have to fill out reams of paperwork. My handwriting is atrocious; it was the first symptom that sent me to the neurologist. And guess what? I had to fill out a lot of paperwork at his office! Although my typing on a computer is no longer as fast as it used to be, at least I have a spell-checker. E-forms are a greatly appreciated and preferred option.

8. ‘Parkinson’s doesn’t kill you.’

It’s true that people do not die from Parkinson’s, but they typically die from complications of the disease. As an example, Parkinson’s can impair patients’ ability to swallow, putting them at risk for inhaling, or aspirating, food or liquid into their lungs, leading to aspiration pneumonia. Pneumonia is the leading cause of death in patients with this disease.

Still, I fear living with a poor quality of life and loss of my independence more than I fear dying.

In the grand scheme of things, comments made out of ignorance are no big deal considering what people with Parkinson’s deal with every day. Now that you know what not to say, read Sherri’s column on things you can say to someone with Parkinson’s.

Sometimes you don’t have to say anything. Silence speaks it all.” —Disha Patani

Dysphagia in Parkinsonism

When I first told a friend I had been given the diagnosis of Parkinson’s, the first thing she said was… “I’m sorry. My dad had Parkinson’s… he died by choking to death… my mother was feeding him.”

Yiikes! Being aware of the possibility of such an outcome gave me the impetus to be proactive. With the recommendation of my Primary doctor I got a vaccination for pneumonia. Additionally, I have read : “Dysphagia is the main cause of aspiration pneumonia and death in Parkinson disease (PD) with no established restorative behavioral treatment to date.”

“Dysphagia is a disorder that causes difficulty in swallowing and successfully moving food from the mouth to the stomach.  Other signs and symptoms associated with dysphagia may include: (I bolded the ones I frequently experience)

  • Having pain while swallowing (odynophagia)
  • Being unable to swallow
  • Having the sensation of food getting stuck in your throat or chest or behind your breastbone (sternum)
  • Drooling
  • Being hoarse
  • Bringing food back up (regurgitation)
  • Having frequent heartburn
  • Having food or stomach acid back up into your throat
  • Unexpectedly losing weight
  • Coughing or gagging when swallowing”

“Difficulty swallowing can lead to:

  • Malnutrition, weight loss and dehydration. Dysphagia can make it difficult to take in adequate nourishment and fluids.
  • Aspiration pneumonia. Food or liquid entering your airway when you try to swallow can cause aspiration pneumonia, because the food can introduce bacteria to the lungs.
  • Choking. When food becomes impacted, choking can occur. If food completely blocks the airway, and no one intervenes with a successful Heimlich maneuver, death can occur.”

Remember I said I want to be proactive?… the literature says:
“no established restorative behavioral treatment to date.” But… in my research, I found a study being done in California, using a device to determine the impact it would have on swallowing for Parkinson’s participants. So perhaps in the future…

I’d had an irritating cough which I’d endured for years until in this last year was resolved when an ENT dr prescribed stronger doses of meds for gurd and post nasal drip than previous doctors had prescribed. I recently expressed my concerns to my primary care doctor who is following my Parkinson’s… “Perhaps I should have kept the cough, because it provided exercise to my lungs?” His adamant view was ‘NO! a cough is indicative of an irritant… which should be eliminated. He then demonstrated several breathing exercises he recommended as a better way to increase my lung strength. 🙂

This past Wednesday, my husband, John, had a hip replacement surgery, and as a precaution, for his lung health he received a spirometer. [photo below] the instructions were to exhale, and then after placing the mouthpiece in your lips, INHALE trying to elevate the floats. John could raise the float on the left till it was totally into the clear space labeled: ‘Good’, ‘Better’, ‘Best’. The float on the right would rise to the 2500 line.

When I opted to try it, the float on the left moved only 1/3rd the way up into the ‘Good’, ‘Better’, ‘Best’ clear space. The float on the right came up to 1750. (the potential shown goes up to 5000)

VOLDYNE 5000
Incentive spirometer. The goal of this device is to open the air sacs in your lungs after surgery, making it easier to breath deeply and keep your lungs clear.

My goal is to incorporate the instructions the nurse explained to John… Do three breaths at a time, at least ten times throughout the day. She suggested when watching tv, everytime an advertisement comes on, take three breaths.

Then, being curious, I went to the internet to see if I could find other tools with a goal to exercise for breathing, and I found the expand-a-lung [pictured below] But NO therapys to address the ability to swallow, unless you call thickened beverages a therapy. However… When I did the LOUD therapy for my soft voice, I was told it would also strengthen my swallow.

The Expand-A-Lung® inspiratory/expiratory breathing resistance trainer is a breakthrough product for improving endurance through better breathing and lung function. Research supports that this breathing exercise significantly improves the strength of respiratory muscles, and increases the volume of lung oxygen intake. It is also an excellent exercise for COPD patients to get rid of the trapped air in the alveoli for better gas exchange. This will surely improve breathing and reduce shortness of breath.