In late May, Parkinson Canada offered a webinar on young-onset Parkinson’s disease (YOPD), commonly defined as a diagnosis of Parkinson’s disease (PD) before the age of 50. The webinar featured a panel of four speakers who all have young-onset PD. They discussed their YOPD experiences, from diagnosis to medications to general topics on living with the condition. The speakers also answered audience questions. We at Stanford Parkinson’s Community Outreach viewed the webinar and are sharing our notes.
The speakers on the panel included:
- Larry Gifford: A media executive diagnosed with YOPD in August 2017 at age 45. His podcast “When Life Gives You Parkinson’s” details his journey with the disease.
- Tim Hague: A nurse from Winnipeg, he was diagnosed in 2011 at age 46. He later won the first Amazing Race (an adventure reality game show) in Canada and founded U-Turn Parkinson’s, a wellness center in Winnipeg for those with PD.
- Soania Mathur, MD: A retired medical doctor, member of Parkinson Canada’s Medical Advisory Council and other advocacy organizations, a writer, and a global advocate. She has been living with PD for 22 years.
- Omotola Thomas: A systems engineer and project manager who was diagnosed at age 35. She is also the founder of the inspirational blog, ParkinStand.
This webinar was recorded and can be viewed here.
If you have questions about the webinar, you can contact Parkinson Canada via phone at 800-565-3000 or via their online form.
There are support groups geared specifically for those with YOPD in San Francisco, Berkeley, Napa, Carmichael, and Palo Alto. To learn more, visit the Stanford Parkinson’s Community Outreach list of support groups in Northern California:
Now… on to our notes from the webinar.
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Young Onset Parkinson’s: A conversation on our unique needs – Webinar notes
Presented by Parkinson’s Canada
May 26, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
Parkinson’s disease (PD) is most common in people over the age of 60. Young-onset PD (YOPD), which occurs in those younger than around age 45 to 50, can be particularly challenging because it strikes during the most active time of most people’s lives, when they are building careers and raising families, or in some cases, caring for older relatives as well. About 20 percent of those with PD receive the diagnosis before age 50, and about 5-10% receive it before age 40. The symptoms are the same as those who develop PD later in life, but because it occurs earlier, it impacts differently one’s personal relationships and ability to work.
What was your experience of receiving a diagnosis of YOPD?
She was just finishing her residency in family medicine and expecting her first child when she was diagnosed with YOPD. She had noticed a tremor in her right pinky but ignored it for a while until her husband, who is also a doctor, suggested she get it checked out. The first neurologist she saw performed a motor exam and told her she had YOPD. Soania was skeptical and sought a second opinion, which confirmed the diagnosis. For the first 10 years of her disease, she described herself as “in denial,” but in the last 10 years she has become more accepting of her diagnosis.
As a nurse, Tim tended to be very self-aware about his health. He noticed a tremor in his left big toe at age 46 and was concerned. His father had passed away from complications of PD, and he has a half-sister with multiple sclerosis (MS). Due to his medical training and family history, he immediately suspected his toe tremor represented either PD or MS, and ended up being diagnosed with YOPD. He didn’t tell his wife until after they returned from a vacation.
She is a systems engineer and project manager. It took over 5 years between when she noticed her first symptom – a persistent twitch in her right forefinger – and when she received her diagnosis of YOPD. Initially, she was told that she had essential tremor (ET) and that it was no big deal. But her symptoms continued to worsen and she sought multiple other medical opinions, undergoing a large number of tests in the process. In 2015, she moved to South Africa and had to start the whole battery of tests all over again. The doctors felt that it was unlikely she could have PD because she is black (PD is less common in those of African heritage), because she is female, and because of her young age, 35 at the time. At the end of 2016, she and her family moved to England where she saw a specialist and underwent a DaTscan that helped to confirm her PD.
He is a media executive who had symptoms for years before he was diagnosed with YOPD at age 45. Initially he noticed changes in his gait but chalked it up to getting older and didn’t seek medical attention for around 8 years when his son asked why he was shaking so bad. Once he saw a neurologist, he received a diagnosis of YOPD pretty quickly.
Have you noticed any cultural or racial issues as it relates to your PD?
Soania: This is another way in which this disease is different for everyone. She comes from a very protective family – if she so much as sneezed, her relatives would worry. So she found it very difficult to disclose her diagnosis of PD to her parents and the rest of her family. Early in her disease, she thought, “Why me? Why did PD happen to me?” But now she thinks, “Why NOT me?” She has a great deal of support and has learned she is well able to handle the disease, so she feels this is the way things were supposed to be for her.
Omotola: As a Christian from Nigeria, initially some of the reactions she received were that she must have PD because she wasn’t praying enough or didn’t have sufficient religious faith. In some African cultures, a disease that makes you visibly shake that has no known cure is often not well received. There is a lot of stigma. She has asked herself the question, “If not me getting PD, then who?” She isn’t thankful that she has the disease but she is thankful for the person it has shaped her to become.
Tim: His father was a pastor and Tim himself is still active in his church. He has been prayed over many times, for healing purposes. Sometimes people ask him what he thinks about others praying for him, and his reaction is that he feels there are other people in far greater need of God’s help than him and he does not need any additional special treatment. He has been given enough good already. This is the journey he has been called to. PD has brought far more good into his life than it has taken at this point.
How has having PD impacted your family life?
Tim: He thinks he sees his kids reacting to the progression of his disease and wanting to help their dad more. While he remains active and volunteers regularly at a local wellness center in Winnipeg, he doesn’t work a normal 9-5 job. He does wonder how it impacts them and it can be quite tough some days. It is really difficult for him to let them help him at all. That said, he feels he would not have won the Amazing Race without his strapping young son along with him!
Omotola: It’s been quite tough; she has a very supportive family and she is so thankful for that. She doesn’t work now but does volunteer actively. Her husband works very hard and takes care of things around the house sometimes that she is less able to do; sometimes she worries that he is doing too much or that he shouldn’t have to shoulder so much of the workload. Sometimes she feels inadequate when she cannot keep up cognitively with her children, who are 13 and 10 but it seems like they are going on 45 in terms of their technological abilities. At times, her children ask her questions and she knows the answer in her head but she has difficulty figuring out how to explain it to them. She knows she isn’t dumb but those moments can be frustrating.
Soania: This disease is not only a diagnosis for us, but for our family as well; it affects everyone.
She has had PD the entire lives of her 3 children, so they have never not known her to have the disease. She feels they have learned a lot from her PD in a positive way: about charity, perseverance, and that not everything in life will be perfect but you have to adapt to it. Now, she finds that her struggle is having them see her disease progression and see that mom isn’t a superwoman; she doesn’t want a “pity party” and tends to stubbornly insist that she can do things, although she knows this is the wrong approach. With three teenage daughters, it can be difficult!
Larry: Often he gets home from work and his 10 year old son wants to immediately go play. But Larry is aware that he needs to be able to sit down, relax, maybe take a short nap, and have dinner first. Then he’s happy to go play. But it’s hard to say no to a 10 year old who doesn’t fully understand.
Raise your hand if…
- You have ever thought to yourself, “I don’t want to be a burden to my family.”
- You have ever had to comfort someone else because of their reaction to your PD diagnosis.
- You felt so bad that you wondered if you could even get out of bed that day.
- You have told someone that you were having a bad day with your PD and they responded, “Well, you LOOK good!”
- You have ever been unreasonably anxious.
Most of the participants raised a hand for almost all of these!
How do you explain what it feels like to have PD?
Omotola: It can be hard to quantify what the experience is like. She has tried describe to her kids that when the rigidity is bad, it feels like she is trapped inside her body. It can be maddening having to walk in water or be submerged in water your whole life.
Tim: Sometimes when he gives public talks, he has the crowd do an exercise. He’ll have people reach over to their neighbor and start tugging on a shirt-sleeve while he continues with the talk. Don’t stop tugging, he says, until I tell you to. That’s how it can feel to have PD. The tremor will start anytime without warning, and when it goes away, you know it will eventually come back. Not only tremor is like this, but also the rigidity, fogginess, whatever your symptoms are.
Soania: She looks at it more as an unwelcome guest along her life journey. Some days, the activities of daily living that others take for granted may not be easy for her to do. When her meds are working well, she may feel quite normal for a brief period of time. But often, something as simple as putting on a pair of shoes or walking to the kitchen to get her daughters their breakfast is difficult.
Larry: He starts to feel sluggish or slow and then realizes he has forgotten to take his next dose of levodopa.
How do you all feel about the “gold standard” medication for PD (levodopa) being a drug that is over 50 years old?
Soania: It’s certainly frustrating. She’s so grateful that we have levodopa, at least! It is very helpful. But this disease has affected so many and will affect so many more; it feels like we should be able to find new treatments. And she feels very optimistic about a lot of the drugs that are coming down the pipeline.
Tim: It rankles him a bit when you consider that time line. Everywhere we look today, we see predictions of a new vaccine for the Covid-19 virus within the next 12-18 months. PD has been known medically for 203 years! We have one effective medication that is really, and a number of others that aren’t quite as effective. If levodopa doesn’t work for you, you’re in a world of hurt.
Omotola: Unfortunately, she is in the “world of hurt” Tim described: levodopa doesn’t work well for her. She has tried it in a number of different forms but cannot take more than 50 mg at a time without experiencing significant dyskinesias. She’s on the Neupro patch now, which is a dopamine agonist she had tried in the past but had to discontinue due to compulsive eating (Editor’s note: this drug class often causes side effects such as compulsive behaviors). She had to restart the Neupro due to being unable to tolerate any forms of levodopa.
She had already been on Neupro for some time when she learned about these possible side effects, and feels fortunate that her manifestation of compulsive behavior is something she is comfortable talking about publicly. (Editor’s note: Other behaviors that can occur include gambling and hypersexuality, among others.) The overeating was causing her to gain a lot of weight, which caused feelings of depression about her weight gain but also made it more difficult for her to move around. Eventually, she felt that she couldn’t live like that anymore and her doctor helped her taper off the drug about a year ago. After coming off it, Omotola realized she had become extremely apathetic and had very little interest in doing anything beyond providing basic care for her children. She is generally a very optimistic person so this was a drastic change for her. She saw her doctor and learned that she was actually experiencing something called dopamine agonist withdrawal.
Now, with all she has been through with this drug, it was an extremely difficult choice to go back on it again. She felt that she had no other option, given her inability to tolerate levodopa. She hopes that her foreknowledge this time will help her be better able to cope with the side effects.
How has personal wellness played into your PD journey?
Tim: This is an area of passion for him. Wellness means aiming for great health to him; it’s not only physical exercise but includes other aspects of health as well.
He uses the acronym “POISSE” to remember the six stairs of wellness:
- Physical – Getting regular exercise and stretching
- Occupational – The things that we spend our time doing throughout the day
- Intellectual – Remaining active mentally, engaging your cognitive faculties
- Spiritual – Maintaining a healthy spiritual life, whatever that means to you
- Social – Keeping connected with others
- Emotional – Staying on top of your mood and happiness
Maintaining a balance and equilibrium between all these facets of life is truly what wellness means to him. At the wellness center where he volunteers regularly in Winnipeg, they focus on these 6 areas and try to help those with PD meet all of them.
All the panelists said they exercise on a weekly basis, some almost every day.
None of you work full-time now; how are you filling your days?
Soania: It was a very difficult decision to give up her busy family practice due to her PD progression but had become quite challenging to keep things running while dealing with her PD symptoms. Her neurologist eventually told her, “Either you are going to walk out of your clinic, or crawl out; it’s your choice.” She felt she needed to put her kids first and make sure she could be there for them. In some ways, it has allowed her to find her true passion of advocating for and supporting others, and that is what she spends her time doing. She writes a great deal, maintains a website and blog and works with several PD boards including the Michael J. Fox Foundation, the Davis Phinney Foundation, and Parkinson’s Canada.
Tim: As mentioned, he is the founder and director of U-Turn Parkinson’s Wellness Center in Winnipeg, which takes up a lot of his time. He is also a professional speaker, so under normal circumstances, he travels and speaks a lot. Currently a lot of those events have transitioned to online. He also tries to focus on being a good husband, father, grandfather, and father-in-law!
Omotola: A lot of Zoom calls right now! She does a lot of volunteering for PD issues and maintains a blog about her experiences. She is also helping facilitate PD research in African countries, working with researchers in the UK. You can visit her website here.
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Question & Answer Session
Q: Have you found any successful methods for dealing with lows in your day when your medication isn’t working?
A: For Larry, a 20-minute nap every day in the afternoon is very helpful. Omotola and Tim have discovered that vigorous exercise first thing in the morning help them feel immensely better the rest of the day; think of it as additional medicine, just not in pill form. It’s also important to be diligent with your medications, as Soania pointed out, and make sure you are taking them on time, or contact your neurologist to see if tweaking the medication schedule can help to prevent some of those “off” periods.
In the moment when it’s happening, Soania recommends trying to just accept that it’s happening, to rest if possible, to limit your activity while you are “off” since your risk of falling is much higher. There are medications now to help with “rescue” doses, to try to respond when it occurs. Anecdotally, crushing your Sinemet pill and mixing it with some orange juice, then swirling it around in your mouth can help it absorb faster.
Q: Why do you think YOPD has “rare disease” status in Europe but nowhere else?
A: None of the panelists knew the answer to this one!
Q: Are sleep apnea, disorientation, and forgetfulness part of PD and if so, would dopaminergic medication help to treat them?
A: Sleep apnea is not directly associated with PD. All the panelists agreed that disorientation and forgetfulness can be part of PD, particularly when “off” medications or if sleep deprived.
Q: I am in the process of undergoing testing to confirm that I have PD at age 41. I want to understand the timeline and progression stages that I can expect. When will I become unable to support my family?
A: No one knows! Unfortunately, we all have different timelines and rates of progression, so no one can answer this question for you. It’s somewhat like the Covid-19 pandemic in that no one is sure what comes next. It’s important to understand that your journey is unique to you; try not to compare yourself to others who may be progressing faster than you, which can be depressing. Soania has been symptomatic for 22 years, Tim for 9.5 years, and Omotola and Larry for 10 years.
Focus on finding people in the community who can support you and help you. You don’t want to do this by yourself.
Q: How have we advanced our understanding of genetics in YOPD?
A: Larry has participated in some research around the genetics of YOPD. He is aware of 60 or 70 genes that have been identified as playing a role in the development of YOPD
Ten percent of those with PD have a genetic component in their illness. It is not a primarily inherited illness, so it’s important to remember that just because someone has family members with PD or with genetic mutations associated with PD, doesn’t mean they will actually develop PD themselves.
Q: This question is for Tim – whose decision was it for you to stop working as a nurse? I am a nurse, too, and was told I was no longer welcome at my job when I got sick.
A: It was Tim’s choice; he had been a nurse for 21 years and he started to feel that he was missing things at work, that he wasn’t as self-aware and able to multitask as well. He was a nurse manager at the time, overseeing a busy 15-suite OR with 225 employees, and it was just too much. His boss didn’t come to him and tell him to leave, rather, Tim went to his boss and said he was scared he was going to miss something or make a mistake that could harm patients or employees under his responsibility. It was the hardest decision he ever made.
Looking back, he wishes he had done some things differently, such as starting dopaminergic medication sooner rather than waiting 3 years.
Q: Is PD a life of pain, pain, pain?
A: Omotola replied no, if you get yourself in with the right community, get yourself support and treatment, rely on whatever gives you solace whether it’s faith or something else, then it’s difficult but it’s definitely much more than a life of pain.
Soania felt it was necessary to live more in the present and try to let go of her fear of the future. Fear is paralyzing and prevents you from moving forward. Optimism and hope are difficult choices but they are a choice you can make.
Q: What is the most exciting thing that you see coming in the next 5-10 years that may change the course of YOPD?
A: Soania gets very excited with all the advances we have made already since 22 years previously when she was diagnosed; our increased understanding of the ways the disease affects many body systems has really furthered our knowledge of the disease as a whole. Tim is excited about the concept of wellness centers for PD; while research is so important, the nurse in him says we have to focus on taking care of the people who are already living with PD as well. Omotola said she is excited that Tim and Soania see these possibilities in both areas.
Larry is excited to see many leaders of PD-focused organizations around the world collaborating more and more, sharing resources, knowledge, and passion.