Navigating Parkinson's Disease From Despair to Determination Part 1

Navigating the emotional tsunami of a life-changing diagnosis like Parkinson's disease isn't a journey anyone chooses, but understanding it can be a beacon of hope in the storm. That's precisely what we unravel in our latest episode, where special guests share their intimate stories and insights on the rollercoaster of feelings that come with such a revelation. From the initial shock and denial to the eventual acceptance and determination, this conversation is a heart-to-heart on the importance of recognizing early signs, debunking age-related myths, and embracing the support of loved ones. We shed light on the subtleties of symptoms that are too often brushed off as mere signs of aging, urging a more compassionate and informed approach to care.

This episode will touch on the often-overlooked emotional distress marked by altered voices and 'mask face'—the expressionless visage that Parkinson's can cause. Yet, despite the diagnosis and fear that often accompanies it, we find threads of hope and optimism. Our conversation today serves as a reminder that beyond the diagnosis, there is life—a life full of potential and fulfillment, just waiting to be reclaimed. So join us as we explore these deep waters, offering a haven of knowledge and understanding for those ready to chart a new course in their health journey. 

Resources
https://www.parkinson.org/
https://www.apdaparkinson.org/
https://www.michaeljfox.org/

Thank you for joining our podcast today. If you have any questions, or comments, or would like to share your own experiences with aromatherapy, please feel free to reach out to us. You can connect with us on social media, or visit our website for additional resources and information.

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We look forward to having you back with us for our next episode, where we'll continue to explore the wonderful world of aromatherapy and its role in promoting mental and emotional well-being. Until then, take a deep breath, relax, and be well. I hope to hear from you soon. Your feedback is most welcome.

www.linkedin.com/in/marianjefferson
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Chapters

• 1:02 Understanding the Diagnosis
• 12:27 Recognizing Depression, Finding Hope

Transcript

Speaker 1: 1:02

There are certain phrases you are absolutely never prepared to hear, and they can evoke strong feelings and emotions that range from fear, confusion, absolute horror, to relief and maybe even joy. Words like you're pregnant, or words like you have cancer, or maybe even the words you have Parkinson's. Everyone reacts differently when receiving these kinds of diagnosis, but the most important thing is, when you are supporting someone who is receiving this information, that you be supportive. Other reactions might be reacting with despair. A diagnosis like this can cause feelings of anger and depression. Imagine that they have had a plan for their lives that did not include this and without information about Parkinson's, they have only what they have imagined or maybe myths that they have heard about, and so this can be very difficult. Another reaction to diagnosis of Parkinson's might be denial. Denial is hearing the information, understanding what it means, but not being able to make it applicable to themselves. It's very difficult to internalize sometimes this information because of the confusion married with the idea of the type of person, the type of reality that they have been facing. And again, if you have expectations about maybe that there aren't things that can be done to improve your life, then it may be very much overwhelming indeed. But on the other hand, for some people they are experiencing a bit of relief. The relief comes because they have seen signs and symptoms. They have known something is wrong, or others around them have been complaining that. They have seen symptoms but have not been able to tell exactly what's going on. And so the diagnosis is a form of relief for them, because now they have that in hand, a diagnosis, they know what's going on. And if you know what's going on, if you've got a diagnosis or a reason for what you've been seeing, then maybe there's something that you can do about it. It can also produce, after hearing this information, a bit of resolve. What do I mean by that? Well, once you have this diagnosis, you have some decisions to make on how you're going to progress, and that can take some time as well. It's kind of like the stages of grief when you hear information, you experience a bit of denial. It may take a while to move from that into some type of action, and so when people hear this information, after a time they make the decision that either their life is over or their life can be just beginning in a new way.

Speaker 1: 4:46

Parkinson's, historically, has been a little bit challenging because there's not really a test that one can take. There's no blood test that is to say that you can take to tell that you have Parkinson's. Really, they're looking at signs and symptoms or observations that people make. And because people don't always readily go to the doctor, sometimes this diagnosis is delayed. Or because there are still myths around when a person can be diagnosed with Parkinson's, treatment and diagnosis are still delayed because we still think that Parkinson's only happens in people who are really old, which again is a very, very outdated myth. Here are about 10 signs that are apparent in people with Parkinson's and, again, about 15% of people with Parkinson's are under the age of 50 and about 5% of people with Parkinson's are under the age of 40. And that's called early onset Parkinson's. And so one of the things that is important to be able to hold in order to help people with Parkinson's or living with Parkinson's is to understand the signs and the symptoms.

Speaker 1: 6:19

One of the first signs that you might notice is a tremor in the hand, and that tremor might look differently. It may not be as severe as you might think, it might be slight and it might not be every day all day. Sometimes that tremor kind of dissipates and you don't see it very often, but it creeps back up on you again. Have you noticed, maybe slight shaking a tremor in yourself or someone you love? One of the other things that could happen along with that tremor is difficulty in holding things or being able to manipulate car keys. Stick the key and the ignition or the remote controls. These are things that would jump out at you if someone were having this problem pretty often. It should not be ignored. Another symptom might be smaller handwriting and again this is because you don't have the dexterity or control in your hands that you would normally have if you were having just a normal way of writing. If you will, change in handwriting might also be a sign that you have Parkinson's.

Speaker 1: 7:44

A loss of smell Some people believe that with age, the loss of hearing and the loss of smell, you know, your senses begin to dull and while this is true, it could be something to kind of pay attention to. I know that we are challenged in these days and times because of SARS-CoV-2, if you will, but there are other things that can change your senses. Definitely not something to be ignored and definitely a place to have a discussion. Some things that you might notice with someone diagnosed or with these symptoms are that they are not able to notice if they indeed have a smell about them or if something is burning or if there are other odors or aromas that are abnormal. They are not as able to tell what they are or what's going on about them.

Speaker 1: 8:49

Trouble sleeping Another symptom that some people say happens as you get older, that you need less sleep. But it could be a symptom of Parkinson's Not just not sleeping, but not sleeping deeply. Very easily aroused, they make it up in the night and you hear them fumbling around in the kitchen or the light is on, as they do a little night reading or early morning reading, or going into the living room or turning the television on in spaces to entertain them, to fill those hours. It's not just a getting old symptom, if you will, or getting older symptoms. It may be something else, not even just Parkinson's. So if there is insomnia, you want to ask a few more questions and check that out.

Speaker 1: 9:39

Another big one is stumbling about difficulty moving, a stiffness about their way of moving. It may seem that they have little control. It may have difficulty with getting up from spaces or even sitting down where they're plopping down, or they may need assistance up, or they have to wriggle their way up out of a chair or something along those lines. They may even have a gait that's difficult wider, if you will in order to control their stance. There's falling as well, and this can be very dangerous, not just in older people, but younger people as well. Head traumas may increase the hip fractures. These are dangers that definitely change the life of individuals who are struggling in this way, and so when you notice these things, it's very important to ask a few more questions. If you are not used to being around someone who is struggling or challenged in this way. When you have an opportunity, do a little investigative questioning, if you will, just to find out how long it's been happening and the changes that occur as a result of these things.

Speaker 1: 10:58

Oftentimes, one symptom may be apparent, but classically in this diagnosis, a lot is going on at one time. Constipation can be really embarrassing to talk about, but it is another symptom of Parkinson's, and it can be very painful. Sometimes people may even take medications from over the counter that do not give relief, and there are all kinds of implications to this constipation, and so talking about challenging things again can be difficult, but you can also explore these things and maybe accompany your loved ones to the doctor and ask about certain questions. Ask your loved one if you can't attend the doctor's appointment. Talk about some of the symptoms that are most bothersome to them. Express an understanding that you realize that it might be a little difficult to talk about, but that you are supportive and that what that support comes with is non-judgment, caring and a genuine desire to want to help them to figure things out so that their lives can be improved.

Speaker 1: 12:27

Noticing a change in their voice, that it has dropped. Their tone of voice is changing. It's a bit more airy or breathy, if you will, and masked face dizziness or feigning, and then the hunching over a bit, the way they carry their shoulders. The mask face really is more about an expressionless face, if you will. So you can even give this person a gift that they've been anticipating and are excited about, and they may say thank you, but the surprise or the joy that would normally accompany receiving such gifts is just not there, and it can be difficult to cope with, but not impossible. These are a few of the signs, and next time we are together, I want to explore a little bit more about the hope that comes along with the diagnosis, because there is hope. Thank you for joining me today on today's podcast Coming Home with Dr Mary Ann Jefferson, looking forward to talking with you again soon, god bless.