[music] - I was, tried
finding my way down to the stairs one
evening when I, and uh, I have suddenly
felt myself uh, just falling off the stairs and
down to the uh, the uh, bottom level
of the house.
- Today on behind the mystery, we're talking to
Keith, his wife Linda, and how they're living with
neurogenic orthostatic hypotension, or NOH.
Never heard of it?
Well let's start with the basics.
N, neurogenic, associated with the
nervous system.
O, orthostatic, related to standing up.
H, hypotension, abnormally low blood pressure.
In the studio this morning to help us
understand this condition, is neurologist
Dr. Stuart Isaacson.
Good morning, Doctor.
- Good morning.
- Thank you so much for being here.
We're gonna hear from Keith and his wife Linda in just a bit,
but first, let's talk about what is NOH?
I've never heard of it.
- Well, NOH as you just pointed out,
is neurogenic orthostatic hypotension.
And it's a condition that's not very common,
but occurs in people who have Parkinson's disease
and some related conditions called
multiple system atrophy.
And the problem with NOH is, usually,
when we stand up, we release a chemical,
a chemical called norepinephrine.
And this causes the blood vessels to constrict,
and the heart to beat faster, so blood pressure
comes up and we don't feel like the blood
pressure's dropping.
We don't have feelings of lightheadedness
or dizziness.
Many people with Parkinson's disease, probably
about one in five have symptoms from NOH,
and when they stand up, not enough
norepinephrine is released and the blood
pressure goes down and down, and they begin to
develop lightheadedness and dizziness and they
might even pass out.
- [Olga] So in terms of how many people
are affected, it's one in five.
- One in five will have symptoms.
These may be provoked by dehydration
or not feeling well or taking medication
that may lower blood pressure.
And then when symptoms come out, we have to pay attention
to the symptoms.
And one way we do this is we have
people check their blood pressure.
They can check it in the visit when
they come to our office, they can check it
at home, often after breakfast might be
a time of day when it's the lowest.
They can keep a diary of how it changes
around mealtime or after meals or
when they're lying in bed at night.
And we find that blood pressure drops,
we always look for a key point which
is at the heart rate.
Usually when blood pressure falls
and someone feels lightheaded, the heart rate goes
up and up and up.
But in neurogenic orthostatic hypotension,
in NOH, the heart rate doesn't change
much at all.
And that's really a key for a doctor or nurse
to make the diagnosis of NOH.
- We recently spent the day with Keith,
who has Parkinson's, and his wife Linda.
His diagnosis of NOH came several years
into the onset of Parkinson's.
Let's hear more.
- Do you want some more coffee?
- Sure.
- A little bit of fruit?
- [Olga Voiceover] It was ten years after his
Parkinson's diagnosis that Keith and
his wife Linda noticed signs and symptoms
of what would eventually be diagnosed as NOH.
Episodes were sporadic.
- [Linda] You know, kinda stumbling as after
being in a car ride or going up a set of steps, why, you know,
why all of a sudden would you be dizzy?
- That was the time when we thought it
was just a, just a periodic event.
That there was, was happening every now and then.
- [Linda] The NOH diagnosis was a little
bit more difficult because initially,
I just thought it was the other shoe
that fell off with Parkinson's.
He'd had a couple falls, not just down the,
the steps, but a couple general falls like,
does this mean this is what happens
with Parkinson's?
And we'd been educated enough to know
that everybody is different.
So we were also very fortunate that our general practitioner
and our move-in specialist spoke to each other.
So between the two of them came up with,
okay, we've got some blood pressure issues here.
- [Olga Voiceover] Keith, a former pilot
and self-described gym rat has learned
to manage his NOH symptoms.
He makes sure to drink more water
along with other lifestyle changes
as recommended by his doctor.
- The enemy is impatience.
At sometimes you're in a situation where
you don't know how severe your, your episode's gonna be.
And so I uh, I have a routine where
I get up and I give the blood a chance
to kinda, and the blood pressure to equalize
and I've been able to avoid any uh,
any mishaps just following a simple set of rules.
- [Olga Voiceover] They keep a blood pressure
log and communicate regularly with
their healthcare team.
- [Linda] Communication with your doctor
is extremely important.
- [Olga Voiceover] College sweethearts,
the Halls have always been an on-the-go family.
They're taking steps to help ensure
they continue to stay active even
with Keith's Parkinson's and NOH.
- When Keith's first initial diagnosis,
to me, it wasn't devastating.
I'm always taken aback when people say that.
So to us, it was just part of what
our journey was going to be.
It might be tiring, but I think to
have things move smoothly, and you do have to
think about everything.
So if you are traveling or you're going out,
you make sure that you, you know,
have your snacks and your water and your glasses
and it's just part of who we are and
what we're doing.
- [Olga Voiceover] And they're committed
to spreading awareness.
- I think the best thing is to, is to look into what
your local resources are.
Support groups can be wonderful, but they also can
not be for everyone.
Finding classes that you can either do together
or finding your own thing that you can do.
- Now Doctor, while you're not Keith's physician,
can you relate this to how your experience
has been with your patients?
- Well, I think what we heard from
Keith and his wife are that these
symptoms come on very gradually.
It's hard to sometimes recognize that they're new symptoms.
He's had symptoms of Parkinson's for several years where he's had
trouble maybe arising from a chair
and walking and having good balance
and movement and now different symptoms
may occur that could be confused with
the mobility problems of Parkinson's.
So it's important when you have any
types of symptoms standing, or after a meal,
to bring those up at a visit with a doctor
or nurse and talk about how the symptoms
may be different and may be early symptoms of NOH.
- Now Doctor, once properly diagnosed,
are there ways to manage NOH symptoms?
- [Stuart] When they stand up, they should do it gradually.
Sit at the side of the bed for a couple of minutes.
Then stand up, and before they walk,
wait a couple of minutes.
Sometimes squeezing the calf muscles
or the gluteal muscles can help maintain
blood pressure when they stand up as well.
Some of our patients wear compression stockings,
usually up to the waist, so it can
really push the blood back from the
stomach and also the legs.
We tell our patients to remain well-hydrated.
To really concentrate on drinking
a lot of water and other fluids.
And adding salt to their diet.
Especially drinking those fluids in the
morning hours when blood pressure is lower.
Some of our patients elevate the head of the bed when they sleep.
And when they don't work, we have
medications that can help as well.
Our patients always have to talk with their
doctors and nurses to make sure that whatever
they're anticipating to do to try to treat
this problem is done with medical guidance.
- It's a manageable energy where you can
modify the, the response that you have
to the NOH by being patient you can live with it
and you can do well with it.
- So Doctor, to summarize everything,
what are the key things we need to remember here?
- Well, I think it's important to realize
that it's, NOH is very common in Parkinson's.
Even more common in multiple system atrophy
and so whenever you have symptoms
that occur when you stand up, always think that it
could be a symptom of NOH and bring it
up at your next visit with your doctor or
nurse and to make the diagnosis, the
blood pressure has to be checked seated,
and also standing with the heart rate to
make that diagnosis.
Because the diagnosis has to be made
so we can use effective management
to try to improve the symptoms and not have people
doing less and less activity, becoming isolated,
becoming depressed, not going out and
going about their day because the blood
pressure's too low.
- Doctor, thank you so much for your time
and all the information you've given us today.
- Thank you.
- And if you'd like more information on NOH,
you can go to this website, NOHmatters.com,
or just check out our website, thebalancingact.com.
[upbeat music]