Double Whammy: Parkinson’s Disease & Neurogenic Orthostatic Hypotension (nOH)

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I was delighted to be asked to spread the word on my blog about a secondary condition many Parkies will face:  Neurogenic Orthostatic Hypotension (nOH).  What is nOH?  Let’s copy-and-paste from the Michael J. Fox Foundation website:

Orthostatic hypotension is a drop in blood pressure upon changing positions, such as moving from sitting to standing. It’s also a non-motor symptom of Parkinson’s disease. Orthostatic hypotension may cause lightheadedness and dizziness, which can result in passing out, fatigue and nausea. It could also contribute to gait instability and falls.

I interviewed a woman named Mona about her experiences with PD and nOH.  She lives alone in Nebraska, and remains remarkably active even though she had to slow down her busy life because of these two conditions.

Here’s a lightly-edited version of the phone conversation we had.  (“Lightly edited” = change every instance of “yeah” to “yes,” or just remove “yeah” completely.  I said “yeah” just as often as Mona….)

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Bruce:
I’m going to ask some questions and I’m recording this so that I can transcribe it later. Is that okay?

Mona:
You bet.

Bruce:
A lot of my questions are general. For example, where do you live now? And where did you grow up?

Mona:
Well, I was born and raised in Kansas City, Missouri, but I’ve been in Scottsbluff, Nebraska, for the last 40 years.

Bruce:

What did you do in Nebraska when you first went there?

Mona:
I was a nurse’s aide. Then I went to nursing school, became a registered nurse, and worked with the hospital for 35 years.

Bruce:
And then you had to stop because you got Parkinson’s?

Mona:
Yes, because I was having cognitive issues and moving issues.  They caused me to quit my job.

Bruce:
How did you find out you had PD? Since you were working in a hospital, did some doctor there help you?  Or did you see a neurologist?

Mona:
Well, I really didn’t notice it at first. And my nurse friends asked me if I’d had a stroke because I was limping on the left side of my body. In fact, one of my orthopedic surgeon friends said, “You better find out what’s going on because you keep limping on that left side.” So I went to my family practice doctor and he ordered an MRI, and it really didn’t show much of anything. He referred me to a neurologist, and she diagnosed me right away with Parkinson’s.

Bruce:
And so what were your early symptoms? You mentioned you were limping or listing to one side.  What else was going on?

Mona:

I was limping on my left side and then my speech got quieter and my handwriting got smaller.  Those were the main symptoms.

Bruce:
Right. I’ve experienced the same, and I’m sure many other Parkies have, too.  But one of my questions is this:  It’s often said that people with Parkinson’s disease each travel their own unique path. So, what has your path been like with Parkinson’s?

Mona:
You’re right.  People associate Parkinson’s with shaking and tremoring and all of that, and I’ve never had those issues. I’m more a limper. And then, like I said, there are the cognitive issues. It’s like, I couldn’t get from point A to point C. Trying to get from the beginning to the end was tough for me. So was trying to get things in an orderly fashion. And then as time went on, my gait started to decline. And then my medications increased, depending on how I was moving around and how stiff I was.

Bruce:
I read in your bio that you like to take walks on your friend’s farm.

Mona:
Yes.

Bruce:
Can you describe what a typical walk might be, or even something unusual that you saw? Like you saw a zebra or a unicorn or something?

Mona:
Well, being in Nebraska, I’m more likely to see a cow or a deer. In Western Nebraska, we have rock formations that are kind of like bluffs. They’re just real pretty. And as far as animals are concerned, I’m more afraid of seeing snakes and skunks. Fortunately, I haven’t had encounters with either one. But basically, I see more deer and prairie dogs and just a little bit of everything.

Bruce:
How long do you walk on your friend’s farm?

Mona:
Oh, probably about an hour.

Bruce:
That’s great!  I should do the same.

Mona:
Yes, it’s good, plus there’s always something to look at.  I plug in my phone and listen to music and I’m on my way.

Bruce:
Do you do any other physical activity?

Mona:
Yes. I’m always busy running around town, plus I like to dance.

Bruce:
What kind of dance?

Mona:
Disco, of course. I’m from the ’70s era.

Bruce:
Well, so am I. I was a big disco bunny, all through the ’70s. That’s so terrific! (Note: See the next blog post for some disco dance music!) Now, when and how did you find out that you also have… and I don’t know, do you call it nOH or neurogenic…

Mona:
nOH. Yes. Neurogenic Orthostatic Hypertension.

Bruce:
And how did you find out you also had this?

Mona:
I knew I had it because I started feeling really dizzy. I was cleaning house one morning, and all of a sudden, I just felt dizzy and woozy and my vision went black. And I passed out. I fell to the floor and it took me a few minutes to get my bearings again.  I started doing this several times a day.  So I went and saw my neurologist. She started taking my blood pressure sitting and standing. My sitting down blood pressure was about 120 over 70, and then when I stood up it was about 100 or 90 over 70 or 60. So there was a big difference.

Bruce:
So you deal with this by taking medicine?

Mona:
Well, at first, I didn’t need it. My neurologist recommended that I wear compression hose and start drinking more because my lack of fluids was causing the hypotension.  At least, that was one of the factors. And so, I’ve been doing that and my symptoms are much better. I still get a little flare-up once in a while, but nothing like I did when I was first diagnosed.

Bruce:
Well, that’s good to hear. Do you live alone or with friends or family?

Mona:
I live alone.

Bruce:
Oh, okay. And do you have any hobbies?

Mona:
Oh, yes. I like to travel. I read, go do things with friends. We go out to dinner and things like that. And sometimes we’ll go to the local baseball games in the summertime or whatever. I just tend to do community things.

Bruce:
It sounds like you have a really nice life.

Mona:
I do. I keep pretty busy. I’m retired, so I try and keep as busy as I can.

Bruce:
Okay. And how do you spend a typical day?

Mona:
A typical day? Well, let’s see. Usually, I’ll get up and get going. It just takes me a while longer to get going than it used to. So I just take my time and once I get my drugs taken and they kick in, then I can move a little faster. But then, like I say, I’ll either have Bible study, or I have errands to run, or if people need me to do things, I’ll go over to their house and do them. It all depends on what’s going on in the day.

Bruce:
So you still drive?

Mona:
Oh, yes.

Bruce:
Wow – that’s great.  What advice do you have for the readers of my blog? They mostly have Parkinson’s disease, but they may not know about nOH. Do you have any advice?

Mona:
Yes. If they start having symptoms or if they have any questions about nOH, they should see their primary care provider, who can provide guidance as to what they need to do.

Bruce:
Is there anything else that you’d like to say that I should put into my blog?

Mona:
Well, I just tell everybody that Parkinson’s is a terrible disease, but with a positive attitude you can get by. I lean on my friends and my family and I have a pretty good support system.  That’s what people need to do: get their support systems going and see their primary care providers on a routine basis. And just don’t give up. You’ve got to keep fighting to stay as mobile as you can for as long as you can.

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Thank you, Mona, for graciously allowing me to interview you.

For more information on Neurogenic Orthostatic Hypertension (nOH), click here: click!

The picture above is of Scotts Bluff National Monument, Nebraska (found on Wikimedia). It looks like nobody is obeying the stop sign! A message to us all as we live the Parkie life!