Parkinson's: The Hidden Symptoms

 

Snarky Parky & me 

A Journey Into Parkinson's

With Nancy Mellon 

Blog Coordinated by Corrine Bayraktaroglu

 

April is:

Spring! A Full Eclipse!

And

Parkinson's Awareness Month

 

AI prompt by c.bayrak

I realized the other day, when texting with Corrine, that most people are not aware of the non motor symptoms of Parkinson's. I thought that if Corrine doesn't know about them, then maybe I need to talk about them. After all, it is Parkinson's Awareness Month:-)

What is Parkinson's disease?

Got Dopamine?

It is “a complex disorder of the brain that is caused when brain nerve cells - neurons- stop working and die.” 

(I have thought of it as areas of my brain going dark. As in the lights go off all over Europe? Yes all dark. I admit it was not in my happiest moments.)

 “Nancy, is that a useful thought?”  Grrr ...No, of course not. 

“The neurons produce dopamine.  The dopamine is what helps people control

motor symptoms” and Ta Da! also non motor symptoms.

Dopamine is very, very important.

Motor symptoms are what Doctors have always used for a diagnosis of PD.  More and more they are asking what your non-motor symptoms are. But if they do not ask, tell them.

 “Having PD does not mean that you can expect to have all these symptoms. Each person experiences PD a little differently.” 

 The motor symptoms are the things that people can see:

1.    Tremor,

2.    Rigidity,

3.    Slowness of movement, shuffling of walk.

4.    Difficulty controlling smaller movements- one arm doesn't swing when walking, Writing smaller and smaller

5.    Postural disturbances- like being stooped over,

6.    Balance Issues/Walking issues-like falling or freezing or loopy walking.

 Non-motor symptoms are the symptoms that people don't see. But they are just as important and troublesome and some start way before motor symptoms.

 So here goes: this is a list of the most common, non-motor symptoms: most are from PD itself.  Some are from the medications we take, some are from both.

The red ones are my personal bugaboos.

1.        Fatigue-Am I shutting my eyes during my classes? You bet and so are many others with PD.

2.        Memory/Cognitive  troubles- Is it aging or PD?  Don't care: It is me feeling stupid, as I don' t remember, don't remember, don remember.

3.        Constipation – this one is almost universal with PD and can start 20+ years before the motor symptoms give someone a diagnosis of PD. Uh huh. Yuck!

4.        Speech-it can be soft, can be raspy, I can sound like I have run out of breath.  I hear from my family and sometimes from my friends, every day, many times. “What did you say?”  “I can' t hear you,”  or you leave with out answering my questions because you didn't hear me. I feel ignored or ashamed for not being loud enough. When I really push my voice to be loud, (I've been told that is what I need to do,) it feels like I am yelling.. I.do.not.like.to.yell.  I am going to start in a Big and Loud program after I finish my self efficacy class.

5.        Vision problems-my latest, least favorite, non motor snarkbite. Steven and I have started doing eye exercises together after dinner and I strangely like that. The exercises are short, easy to do and we are done in under 10 minutes.. If anyone wants a copy of the eye exercises, they will be in a link at the bottom of this post.

6.        Mood- I do a lot of crying for a month and then I don't.

7.        Swallowing

8.        Dry mouth- not sure if it is a side affect from my meds or not but it is something I live with all the time now. It doesnt help speech if your lips are sticking to your teeth. I have added water to my list of what I must bring when I go out.   On this mental list is also a 'maybe' mask, my phone, my meds, my paper pad and a pen (to write down when I take meds and any notes from a  doctor) and of course, a handkerchief to dab with!   Steven has also taught me that I can conquer a dry mouth with a piece of chewing gum. He offers me one before we go out each time..“Thanks darlin'.”

9.        Loss of smell

10.    Panic Attacks- I had them many years ago-50 years? OMG!  Thank goodness, have not had them since.  Were they early signs of PD?  I don't know.

11.    Lack of Fascial Expression- You can gain back your smile!  You need to keep working your face muscles.

12.    Hypotension- 80/53 to 190/79  Yesterday, I had low blood pressure to high blood pressure- whoo boy, couldn't get ahold of a Doctor-we went to the ER. They did a boatload of tests,  again. I've been there 2 other times, in the last 6 months, because of Hypotension. 

Then they sent me home!!! I was so glad. They still don't know why this is happening or what to do about it. EXCEPT- DRINK LOTS OF WATER. And don't get stressed.

13.    Impulse Control Disorder and delusional behavior

14.    Sleep difficulties- Oh Boy, this has been my main non motor symptom for over 4 years. It started the year before I was diagnosed with PD.  It is  always changing how it affects me.  I have tried  many solutions, including a Clevland Clinic online course about sleep, having a sleep specialist to talk to regularly, doing a sleep study to rule out some sleep problems,  medications and CBD and medical marijuana. Bah Humbug!

15.    Bladder Dysfunction- new symptom for me. Hard to feel good about myself with this one.

16.    Pain- the snark has been biting me quite a bit lately. Pain is common in PD but is not reported to Doctors very often. Nor do they ask you about it.

17.    Depression- I am not sure if this one is present or not.  It has been around in the past for me.  It is quite common for PwP (I learned this new short version for saying People with Parkinson's.)

18.    Anxiety- Though it is a very common symptom in PwP, I am not sure if I can blame PD for this. I have been anxious for most of my life.

19.    Gastric Reflux

20.    Hallucinations

21.    Sweating/ temperature changes

22.    Drooling- Dab, dab, dab

23.    Dementia-can happen with the latter stages of Parkinson's.

24.    Erectile Difficulties

Take care,  Nancy and the Snark

Eye workout exercises at Darebee

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FOOTNOTES FROM CORRINE: LOL between your soft voice and my sucky hearing we make a right pair trying to conversate. Thanks for sharing all this info. It's important to know these things. My question to you is how best you want your family and friends to respond? It's unique to each person but I know that when I had cancer it can be very very hard for some to know what to say and they either felt awkward or pulled away or offered to help. I felt it helped for me to break the ice and pave the way, and in my case it was humour. Not the same of course but the concept of helping others to know how to respond is the same.