[00:00:00] Jeff Lasley: And he said, I suspect you may have Parkinson’s disease. And I want you to see a neurologist. And of course that was shattering
[00:00:10] Anna: A diagnosis of Parkinson’s disease can be a daunting prospect.
[00:00:15] Dr. Gilbert: Although this diagnosis is probably shocking and distressing when you’re originally told it, I think you need to view it as a chronic disease.
That can be well managed.
[00:00:24] Anna: And often it’s difficult even to get a diagnosis.
[00:00:28] Kat Hill: It’s not something that you go to the doctor and get a blood test for. Sometimes it takes some time and investigation on the part of providers to figure out what is the diagnosis.
[00:00:42] Anna: Some people only have Parkinson’s on their radar because of another family member.
But we know it’s much more complex than just genetics.
[00:00:49] Wayne: The reason I recognize the symptoms, my dad had the same thing. And so I knew what I was in for, but fortunately, uh, medications are better.
[00:00:59] Anna: Whether it runs in your family or not learning, you have, the condition is a lot to process. In this episode, we’ll discuss the diagnostic process of Parkinson’s touching on both the physical and psychological impacts of receiving the news that you have the disease.
[00:01:14] Dr. Pontone: We really don’t have any definitive biomarkers or blood markers for the disease, the majority of the time. And so one of the first mental and psychological challenges is accepting the diagnosis.
[00:01:27] Dr. Mathur: It was a lot of denial. It was a lot of avoidance behavior. It was sort of busying myself with busyness and nothing else.
So initially I really spent it more in denial and avoidance and fear of the future more than anything.
[00:01:40] Anna: Welcome to the Parkinson’s Disease podcast. I’m Anna Stoecklein, a registered nurse, and your host, as we learn more about this condition. The information in this series was created for educational purposes only. It’s not a substitute for formal medical advice, diagnosis, or treatment. So if you have questions about a medical condition, talk to your qualified healthcare provider.
[00:02:05] Kat Hill: I certainly did have the classic tremor when I was diagnosed or finally diagnosed.
[00:02:11] Anna: This is Kat Hill. She’s a retired midwife living in Oregon, who now raises awareness for women living with young onset Parkinson’s disease.
[00:02:20] Kat Hill: Prior to that, I had a lot of the non-motor symptoms of anxiety.
[00:02:26] Anna: Kat describes some of the earlier signs we discussed in episode one.
[00:02:30] Kat Hill: Some internal tremor, some change in the way my brain was working. And I wrote a lot of that off to my busy life. I was a practicing midwife at a busy inner city hospital.
[00:02:45] Anna: Dr. Rebecca Gilbert, a movement disorder specialist, and chief scientific officer at American Parkinson’s Disease Association explains how a person may begin a diagnosis process.
[00:02:57] Dr. Gilbert: One of the standard processes of being diagnosed with Parkinson’s is you may notice some problem that’s developing. You may notice that your shoulder is a little stiffer.
You can’t get your coat on. You may notice a tremor. You may be walking a little bit differently. Maybe your relative or spouse is noticing these things. You’re a little more hunched, for example.
[00:03:17] Anna: And then a person might visit their primary care doctor.
[00:03:20] Dr. Gilbert: Your doctor maybe refers you to a neurologist and the neurologist does a neurologic exam.
[00:03:27] Anna: This involves simple physical examinations and a conversation about your medical history.
[00:03:32] Jeff Lasley: He did some standard tests on me for stiffness and flexibility.
[00:03:37] Dr. Gilbert: So there are certain things the neurologist will do to assess your movement, how fast you move, whether you have tremor, what your speed and stiffness of your limbs are.
And also we’ll look at your walking. And even before the exam, they’ll take a complete history. They’ll ask you lots of questions about all the non-motor symptoms. They’ll ask questions like how’s your sleep? How’s your mood? How’s your thinking? How are your bowels, your bladder, et cetera, with all that information, they will potentially give you a clinical diagnosis of Parkinson’s.
[00:04:08] Anna: For many people, a short and seemingly simple set of movements can suddenly result in a life changing diagnosis.
[00:04:15] Dr. Gilbert: They will say that your neurologic exam is consistent with someone with Parkinson’s. Your tremor is consistent with someone with Parkinson’s. You are slow and stiff on one side. Your walking is very characteristic and you’ll walk away with a diagnosis of Parkinson’s.
This can be frustrating for people because they’ll say you looked at me for a few minutes. You asked me to do these simple things with my arms and my legs. And now you’re telling me I have Parkinson’s that’s it. There isn’t a test. And the fact of their matter is, is that for many people, that is enough because there are very classic ways of looking and moving when you have Parkinson’s, that really can be Parkinson’s and nothing else, a seasoned neurologist can be pretty sure that that’s what they’re dealing with.
They’re actually studies that have shown how accurate the clinical exam is in diagnosing Parkinson’s and it is quite accurate. So that is the way to go for many people.
[00:05:06] Anna: Kat’s experience is testimony to how simple the diagnostic experience can be.
[00:05:12] Kat Hill: I saw my primary care provider, who I had had an ongoing relationship with.
I had seen her for many years and she was concerned about the growing number of neurologic symptoms that I was exhibiting. And she referred me right away to a movement disorder specialist. When I was seen at that first appointment, the neurologist came out and said that he thought that I had Parkinson’s disease.
And I was shocked.
[00:05:40] Jeff Lasley: I’d also been having some stiffness in one of my shoulders, pretty consistently. And I went to my general practitioner for that. I would get shaky after I worked out and I thought maybe I had a blood sugar issue.
[00:05:52] Dr. Gilbert: There are, of course, people that don’t have the most classic presentation.
They may not have the classic symptoms and it’s a little unclear what’s going on. Their tremor isn’t as classic as one would like they may have other medical problems or other things that may have happened to them. Maybe they had a stroke in the past that complicates their exam. And in that case, there are tests that can be done.
[00:06:13] Anna: These tests are more complex than the simple neurologic exam we just heard about
[00:06:18] Dr. Gilbert: the test that’s been available for the longest is something called a DaTscan. This is an imaging test of the brain. You get a radioactive tracer injected, and that tracer goes to the brain and attaches itself to a certain molecule. Then you can see whether there’s a change in the dopamine system, in the brain.
[00:06:37] Anna: The DaTscan does not, however, detect whether a person has Parkinson’s disease or another Parkinsonian condition that we talked about in the previous episode.
[00:06:46] Dr. Gilbert: However, you cannot distinguish between the various Parkinsonian syndromes based on that test.
And so it does have its limitations. There are two new tests on the market for Parkinson’s disease, a skin biopsy, and a test of the cerebral spinal fluid. Both these tests are pretty new and not all neurologists may even be familiar that these tests are available.
[00:07:07] Anna: Both of these tests are looking for a specific protein in the spinal fluid or within the skin, lower levels of the protein may indicate that somebody has Parkinson’s.
[00:07:16] Dr. Gilbert: It can distinguish between some disorders, but not others. So there are limitations to each of these tests, but it is exciting that there are other ways to show that Parkinson’s or a related disorder is happening. And we’re very excited that the field of diagnosing Parkinson’s is evolving.
[00:07:34] Anna: You’re listening to the Parkinson’s disease podcast. Part of the Health Unmuted library. To find more series about a variety of specific health conditions, search Health Unmuted on your podcast player.
We’ve been talking about the process of receiving a new diagnosis of Parkinson’s disease, but there are also more common movement issues a person might be diagnosed with and treated for by mistake. When they in fact have Parkinson’s disease.
[00:08:02] Dr. Gilbert: They may go to an orthopedist because they think they have a frozen shoulder and the orthopedist may think they have a frozen shoulder.
In fact, some people may get surgery for their frozen shoulder, but really it’s Parkinson’s disease.
[00:08:15] Anna: There’s room for misdiagnosis with a condition that is as complex and uniquely presenting as Parkinson’s. So how does a person experiencing this big life change navigate finding a set of doctors who are experts able to help them best?
Dr. Sonya Mather is a general practitioner who lives with Parkinson’s herself.
[00:08:33] Dr. Mathur: I was diagnosed with young onset Parkinson’s disease at the age of 28, about 24 years ago.
[00:08:41] Anna: Here’s what she suggests when someone receives a new diagnosis of Parkinson’s disease.
[00:08:46] Dr. Mathur: The first thing I would do is get us educated about the diseases I could, cause I think education is power in this disease. It helps you manage your treatment plan. It helps you build your care team. And that’s the other thing I would do is build a care team. So know what my quality of life goals are and build a care team to help me achieve those goals. And for every person that may be different, it may be that you add a physiotherapist to your medical team, an occupational therapist, a speech language pathologist, a social worker, an exercise specialist.
[00:09:13] Anna: But how do you decide who is on your team?
[00:09:16] Dr. Mathur: Whatever will help you get to where you need to go in terms of your quality of life goals, which for some may be walking to the end of the driveway to get the mail for others, maybe running a marathon.
[00:09:25] Anna: Since Parkinson’s is not only a disease of the brain, but a multifaceted condition impacting the whole nervous system having a multifaceted approach to treatment makes sense.
[00:09:36] Dr. Mathur: Integrated a care for Parkinson’s disease has shown to improve quality of life for patients. That’s just a given because, you know, if you think about it, when you go to see a movement disorder specialist or your neurologist, your time is limited.
They have a lot to cover in a very short time.
[00:09:49] Anna: In the upcoming episodes, we’ll speak to people. In different specialist roles to help understand what exactly they do for their patients with Parkinson’s.
[00:09:58] Kat Hill: All of us desperately want a prescription for how to live your best life with a chronic illness. And nobody can hand that to you.
That’s also part of what I’ve learned. I’ve picked and chosen the tools that are gonna most benefit me. And that takes some time. It’s like, you’re your own science experiment because you get bombarded with occupational therapy, options, physical therapy, options, medication options, exercise options, and sifting through all of that takes time and often money knowing that it takes time and that nobody can hand you that exact prescription.
I wish people knew that more upfront.
[00:10:42] Anna: It may feel overwhelming to engage with so many new people during diagnosis, but physiotherapist Ashley Campbell tells us how to approach doctors that might be a right fit for your team.
[00:10:53] Dr. Campbell: My biggest advice is to ask questions. I think in our medical system here, we might see our doctor for 30 seconds to five minutes, and it can become a very whirlwind experience where we get told a lot of information and we leave not really knowing what happened.
So, come prepared, come with a list of questions. How frequently do you treat this diagnosis? What do you do to stay up to date on the latest research for this diagnosis and what are your patient outcomes like for this? And if they can’t speak to that, then maybe it’s not the best fit. Parkinson’s is a life changing diagnosis that can’t be discussed and rationalized in a five minute conversation.
[00:11:32] Anna: Dr. Mather says the care team can become quite large, but that’s fairly normal.
[00:11:37] Dr. Mathur: There’s lots of allied healthcare professionals that have the time and skills that can help you optimize your quality of life. So you need to choose different people to come into that team. And that team can also include people like your care partner or people in your support network.
I count them as part of the care team because they really do add your quality of life as well.
[00:11:55] Jeff Lasley: My wife primarily she’s been real supportive of everything I’ve needed and helped me so much and very fortunate to have her. I also would count my acupuncturist that I’ve seen frequently, the massage therapist that I see regularly.
[00:12:14] Anna: Whether or not you’re in the US.. If you’d like to learn more about Parkinson’s disease, head to healthunmuted.com to find a full list of resources, including a guide to navigating Parkinson’s in the early years from the Michael J. Fox Foundation and a PDF about getting diagnosed from the European Parkinson’s Disease Association.
You can also find ways to get involved with global and local advocacy organizations, such as PD, Avengers, and a selection of other podcasts that you may find helpful as you continue to learn more about this disease, such as the Michael J. Fox Foundation Parkinson’s podcast.
In the next episode, we’ll hear what it was like for people to be diagnosed with Parkinson’s during the prime years of their life. And we’ll explain the differences and similarities in Young Onset Parkinson’s Disease.
[00:13:02] Kat Hill: My dad had Parkinson’s disease and I have several family members that have Parkinson’s, but they were all diagnosed later in life and all of them are men. So it wasn’t really, even on my radar for myself.
[00:13:15] Jeff Lasley: I worked for eight years after I was diagnosed, it became a problem for me at work, symptoms tend to get exacerbated when you’re under a little bit of stress, like being nervous.
If I have to do a presentation in a meeting in front of the whole unit I was with my tremor would get real bad and I get self-conscious about it.
[00:13:37] Anna: And we will hear how those with young onset coped with their diagnosis.
[00:13:41] Dr. Mathur: Mine was denial and it was busy myself with everything else that was going on in my life.
Other than that, doing the minimal care that I needed to do. But now if I had to do it over again, it would be much different approach.
[00:13:53] Anna: Thanks to Dr. Gilbert and Ashley Campbell for their professional expertise and to Kat Hill, Jeff Lasley, Wayne Folkston and Dr Mathur for sharing their personal experiences.
This is the Parkinson’s disease podcast hosted by me, Anna Stoecklein. This show is a part of the Health Unmuted audio library by Mission Based, to listen and learn more visit healthunmuted.com and follow our show on your favorite podcast player.