Raising Awareness

In Home Life
About three months ago Cassie’s mom, at age 66, was diagnosed with Parkinson’s Disease. Her hands had been shaking for awhile, but she had assumed it was a nonessential tremor. When the doctor told her otherwise she was forced to reckon with the reality of her present and future situation.

April is Parkinson’s Awareness Month, and Parkinson’s Disease is the second most common neurodegenerative disorder (second only to Alzheimer’s). Yet for a remarkably prevalent disease the personal experience of being diagnosed with it, coming to terms with it, and living with it for many years is not well understood. There is still a social stigma around the illness and unless you or someone you love has faced Parkinson’s you may not know the full extent of the disease’s impact on a life. Beyond the trembling or impaired motor movement, because this disease stems from the brain, many symptoms remain hidden.

To help raise awareness, Cassie took the opportunity during a recent visit to sit down with her brave mom to tell her story, to unmask some of those hidden symptoms and let people know what it’s like for at least this one, lovely individual. We can’t understate her courage in talking about this as it’s people like her who share their stories that make it easier for others to do so too.

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Visiting the St. Thomas monument for Jumbo the Elephant, March 2016

Cassie: How did you feel when you first got your Parkinson’s diagnosis?
Cassie’s mom: I was surprised. I didn’t expect that diagnosis, I thought I was just shaking. I was saying to everyone, “I hope it’s not Parkinsons.” And everybody – nurse practitioners, doctors, acupuncturists – was saying to me, “I don’t think it’s Parkinson’s.” Probably because they suspected it was Parkinson’s and they didn’t want to get me upset.

Why did you hope it wasn’t Parkinson’s?
Because my grandpa had it. At the end he couldn’t read, he couldn’t walk around, he didn’t talk. He was pretty incapacitated. I also had an old colleague who had Parkinson’s and I watched him deteriorate over several years. He had trouble walking and balancing, he shook a lot, and his speech was off. He died three or four years ago. I assumed then it was because of Parkinson’s.

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In Cassadega, Florida in January 2016, pre-diagnosis

Would you assume differently now?
Now that I know you don’t die of it, yeah.

What did you know about Parkinson’s before you were diagnosed versus what you know now?
Not too much. I just knew it made you wobbly and sort of took away your senses, and you shook. The shaking was the thing that made me go to the doctor in the first place. I now know that there are two kinds of Parkinson’s and with the kind that I have the symptoms develop more slowly and it’s more responsive to medication. So that’s good news. I also know, and it’s taken me a month or two to realize this, that it is a progressive disease. So just because I’m not experiencing a lot of the symptoms, it doesn’t mean I’m getting well. It just means enough time hasn’t passed yet for some more symptoms to show up.

Just because I’m not experiencing a lot of the symptoms, it doesn’t mean I’m getting well. It just means enough time hasn’t passed yet for some more symptoms to show up.

How do you think it will affect your life?
Well I hope it doesn’t take my voice away or mess with my memory too much. I can stand being awkward, I guess I felt like I was awkward all my life. I just hope I can go on doing things, like traveling, visiting, going for walks. It probably has affected my work already. I sit with my arms crossed a lot. Nobody so far has said anything about my shaking.

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Cassie’s mom at about the same age Cass is now

Do you find it hard to talk about with other people?
I’ve told everybody, all my friends and my family. But that’s me – when something happens, I tell people. I think there is a stigma as far as work goes. When Michael J. Fox came out and started talking about Parkinson’s, that was a big deal. A lot of famous people actually have Parkinson’s. I don’t remember exactly what the statistic is but it’s very common, a lot higher than you would have thought.

I think people without exception have been warm and nice about it. There’s nobody that’s said or given me any indication of, “Ew you’re sick, I don’t want to have anything to do with you.”

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Visiting us in Paris, June 2015

When you told me the diagnosis I thought, “That makes sense.” In person I thought you were getting distant as you got older, but talking to you on the phone felt normal. Maybe that was the face masking.
And I of course probably wouldn’t see that unless I’m looking in a mirror all the time. But other people have said to me the same thing you’ve said. My friend said when she started looking it up the symptoms fell into place. Other close friends have said the same thing.

Like, you’ve seen me walking without swinging my arms. The shaking. The fact that it takes me longer to get out of a car than it takes most people. I have to think about it. The writing, the handwriting getting smaller. Somebody said I was shuffling my feet, and I didn’t realize I was doing that. Those are probably the biggest things right now.

Does the diagnosis change the way you live?
Well I suppose there could be some kind of urgency to do the things that I want to do because I don’t know if I can do them ten years from now. Like traveling. I’ll keep on traveling as long as I can. That’s probably by far the biggest thing.

I read that one of the biggest dangers of Parkinson’s is falling. Does that worry you?
I tipped over in the restaurant today, I don’t know if you saw that or not. I don’t know that it had anything to do with Parkinson’s, there was a step there and I was chasing Moo. I don’t want to be Grandpa Singly. I don’t want to sit in a chair all day, and not talk, not move around. I don’t want that. Not be able to read. He couldn’t read and he loved reading.

There are things to try. It seems to me hypnosis might help with the trembling. Acupuncture didn’t help. And I went to the Theta healer and that didn’t really help. We’ll see.

Are you concerned about the drugs you are on? I know they try to keep you on a low dosage to start. Do they lose their effectiveness over time?
They do help the symptoms but yes, over time you have to take more or take something different. And if you get on the L-DOPA [levodopa] medications, they have pretty bad side effects. Like if you’re not jerking around and acting spastic normally, you will be when you’re taking those medications. It’s a trade off. Timing is important, apparently, when you take these medications. So right after you take it you’re good, and then some hours later you’re spastic. So I guess the goodness is worth the… I don’t know. That part I don’t like at all. I’m taking medications for four conditions now, and I don’t believe in taking medications. That’s crazy.

Depression is also a symptom of Parkinson’s. I do want people to know that. It’s treatable and it’s an awful thing to have, depression is. Your diagnosis with Parkinson’s is bad enough as it is, but if you’re depressed you’re going to be feeling much more negative about the whole business. You’re not going to think any other way about it other than negatively.

I’m thinking of your grandchildren. What do you want them to know?
Oh you know, I’ve thought about writing my grandkids letters, and doing it now. Maybe I’ll get well. If Michael J. Fox is funding research, maybe something will happen with the research.

Are there exciting areas of research that you know of?
Most of the medications that have been tested have been directed toward dealing with something that’s produced when neurotransmitters are breaking down the ability to process dopamine. There’s some side product that comes out of that, and that product is thought to cause a lot of the symptoms, and so a lot of the medications have been designed to minimize or do away with that product. And they don’t seem to work very well. That whole approach isn’t working very well. But there’s a new approach that’s designed to increase the resilience of all the cells that are there, to make you stronger so that you don’t break down as fast. That seems to be working. And that of course makes more sense to me – to focus on health rather than focus on what’s already broken.

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Four generations swinging at Jury Street Park

Do you think the Parkinson’s is genetic in your case? Do you think it’s environmental?
There might be a genetic piece to it. The chances are good you’re gonna have a relative that’s had it. I think what everybody’s dying of these days, in America at least, is largely environmental. Who knows the impact of all the drugs that we take and the food that we eat and the chemicals that are used in our environment? We’re the first generation to have all of that. Who knows.

Looking back, would you have eaten differently or lived differently?
Probably not. I mean I had this perfectly lovely eating disorder that probably prevents me from being totally healthy about food. And eating disorders, like all addictions, are related to dopamine.

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Florida, December 2015

There seem to be threads of ill health throughout your life tied together by this Parkinson’s diagnosis. Did the diagnosis help you make sense of your symptoms?
Well that’s why when the doctor said, “You have Parkinson’s,” there wasn’t a whole bunch of resistance to the idea. It was like, “Oh, okay.” It was the writing that got to me the most though. I mean I had noticed it, but I wasn’t going to admit it at all. The doctor was talking about several things he had noticed during the exam and they just all added up.

Why do you think the writing in particular bothered you?
I have no idea exactly. I’ve always been complimented on my handwriting. I had noticed it changing, but I hadn’t made anything of it because I didn’t know it had anything to do with Parkinson’s.

Geocaching in High Park, Toronto 2013

I’ve just noticed my voice getting lower in the last couple of weeks. That would be bad. If I lost my voice, I couldn’t work. That’d be bad. I could watch all the TV series though! [laughing]

Maybe that’s what Grandpa Singly thought!
[Laughing] Maybe so.

I know you have a recumbent bike and you do that every day. Have you noticed it making a difference?
I really haven’t. I started taking the medication at the same time and I’ve sort of credited the medication with moving better. I really hadn’t noticed I was shuffling. I guess any vanity I might have ever had is going to have to go out the window.

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Trip to Iceland, February 2016

What about asking for help – do you feel like you need more help than you get?
No, I feel like people are really generous with help. And I am capable of accepting help. Someone was helping me get in the car and I said something like, “Sorry I’m so klutzy,” and she said, “You’re not at all, you just let people help you.” I do let people help me.

Do you get more help than you need?
Maybe, a little bit. I wondered about that when I was traveling. When one companion wasn’t holding my arm, another was. They were very sweet. Even our tour guide held my arm a few times.

Do you think there’s something to be said for not getting help if you don’t need it?
You know, when we were hiking on the trail the other day, you could have just let me fall down the hill. [laughing] But it wouldn’t have given me any kind of warm feeling to have made it on my own. That’s really not important to me. It never really has been I guess.

It wouldn’t have given me any kind of warm feeling to have made it on my own. That’s really not important to me.

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Cassie and her mom at New Smyrna Beach Florida, 1989

April is Parkinson’s Awareness Month. Is there anything else you want people to know?
I don’t want to identify myself as a person with Parkinson’s. I don’t want to go to support groups. I don’t want to be identified primarily as someone who has Parkinson’s, I don’t want that to be the first thing someone knows about me. And I don’t want to perceive myself that way either. And there’s a kind of sick part of it where one could sort of enjoy the attention of being someone that has something seriously wrong with them. There’s a little bit of that in me and I don’t want to be like that. At all.

So I just don’t want my whole life to be built around… that.

Thank you very much for sharing.
You’re welcome.


Again we’d like to thank Cassie’s mom for sharing her story, we know it wasn’t easy. If you’d like to donate to Parkinson’s research, Cassie’s mom recommends giving to the Michael J. Fox Foundation who use 89% of their funding for research and who have stated an intent to find a cure in 10 years.

To learn more, watch this Ted talk about designing simply for life with Parkinson’s by Mileha Soneji, visit National Parkinson Foundation for a wealth of reliable information, or consider attending the World Parkinson’s Congress where patients, practitioners and carers plan to gather this September in Portland.

32 Comments

  1. Thanks for the post Cassie and your mom also. We have a dear friend from Paris who has been dealing with this cursed affliction for several years now. If you contact me I will provide further details so that you may meet our friend who with his wife are strong advocates of local Parkinson support groups. Best wishes. George

    • George, I would like to meet your friend. I will be in Paris at the beginning of June for the birth of my new granddaughter – #8
      Cassie’s mom Ann

  2. Cassie, I am very thankful that you and your mother shared your story. It inspired me to work on something similar with my mom while I have the chance. She’s suffering from a very aggressive and incurable form of leukemia and we don’t know how much time she has left. The photos of your mom and little girl together had me in tears. I am so happy to see you are spending quality time together. XO,
    Jess

    • Aw Jess, I’m so sorry to hear that. I hope a shared project between you and your mom becomes a joyful thing for you both, I’d love to see it if/when you’re ready to share. xoxo back at you.

  3. This is just beautiful from the writing to the photos. I wish you and your Mom all the best. Keep on fighting, Cassie! Nothing beats a failure but a try! I’ve heard a lot about the Wahls Protocol, as I’m fighting Lyme diease right now. It’s a book written by Terry Wahls who lives with MS and reversed many of her symptoms by researching the cell and changing her diet to increase and improve the cellular function. You may want to read that book. If anything, it may give you some other ideas besides medication to change symptoms. Lots of luck to you both.

  4. I applaud your courage and candor! I’ve been dealing with PD for 5 years and I have 75% of the same symptoms. The one really major difference is exercise – specifically cycling. As long as I cycle 4-5 times a week for 30-60 minutes I can notice a significant reduction in symptoms, specifically tremors, balance and speech. Each of my 6 month evaluations have been better the previous one. Everyone is different when it comes to PD or are they?

  5. I know the news of this disease might have shocked you in so many ways, not just your mom but you tremendously. I know it is not an easy road. Enjoy every moment you have together before the disease takes over. Thank you for sharing your story.

  6. This reminded me of my grandmother, who suffered Parkinson’s disease as long as I knew her. At the time of her diagnosis–somewhere in the 1960s–Parkinson’s was a death sentence. My grandfather retired early to take care of her and then the ‘new’ drugs came on the market and she lived a much longer life than doctors gave her. There is hope in medical advances. I hope your mom gets to see all the sights she has hoped, read all the best books and live life to the fullness she desires regardless of the time she is given.

  7. I admire Cassie’s and her Mom’s attitude towards this hard time. Such courage. This post will not go in vain, this will enlighten and strengthen people with the same disease, together with their family. Thanks for sharing.

  8. I think it’s so brave to come out and talk about this horrible disease. I lost my grandad to it a few years back and I hated seeing him deteriorate so much it was heartbreaking. He used to tell the best stories and towards the end he wasn’t able to speak.
    There should be so much more public awareness and knowledge about symptoms and what actually happens.
    I hope that one day there will be a full cure for it.
    I wish youand yours family all the best!

  9. It is lovely that you both have the courage to be open. My father lived with the disease for many years – and lived for the most part, pretty well. He died of unrelated causes in the end and Parkinson’s was really a part of his life rather than a death sentence. Perhaps the worst part was the stigma – people used to think he was drunk because he trembled…. I very much hope that the future brings you both much joy and happiness as well as the inevitable challenges.

  10. The photos, along with your mother’s words with your questions, are absolutely beautiful. You capture her before and after diagnosis shots, and her thoughts, her opinions, her fears, her hopes. You show her to be a person, not a patient, and she is beautiful. My mother has Alzheimer’s disease, which some say is related to Parkinson’s or caused by similar issues in the brain. The last time I visited her, I noticed how much her hands now shake when she tries to lift her coffee cup or feed herself a spoonful of cereal. That was new — and distressing, although having my mom forget not only her children but her own identity overshadows that distress. Sometimes when I hear her speak to me on the phone, she gets the words right (which doesn’t happen much anymore), and I can imagine that she is still who she always was, my wonderful, intelligent, fun-loving mother. But then she reverts to her new normal, joining words in nonsensical ways that leave meaning a mystery, and I feel I have lost her again. I wish I had interviewed my mother the way you did yours. This is truly a beautiful post, not only a tribute to your mother but also a reminder of the people — always people, not just patients — who suffer from these dreadful neurological diseases. I wish you and your family much joy and strength. Thank you for sharing.

  11. My father was born in 1958 and diagnosed with Parkinson’s and Alzheimer’s. He is currently living the struggle and my family and I do whatever we can to raise awareness. We constantly have fundraising events as well as put together a Facebook page to share information on different events and news stories relating to the disease. Thank you for your post.

  12. Thank you for this beautiful post… my father has advanced Parkinsons. It is a cruel disease and one we need to raise awareness for. Thank you for your courage in writing something that I know is very hard to deal with.

  13. A beautiful interview, Cassie’s mums honest and open thoughts about her diagnosis echoed my own feelings when diagnosed 9 years ago aged 43. I am still here, and the world that PD has opened up for me I now count as a blessing despite the battles. I wish Cassie’s mum and her family well. Thank you for sharing your story.

  14. I’m not sure if you have heard of the program, but ROCK STEADY out of Indianapolis is a boxing program specifically dedicated to Parkinsons. I personally run a school in Petaluma, California that offers it. Check out there website https://www.rocksteadyboxing.org/…or google Rock steady there are plenty of affiliates all over the united states! -Scott

  15. You’re an extremely inspirational person. I have learned about Parkinson and written many essays about it; it is a terrible disease. for you to be this selfless of a person amazes me! You are spreading the word and trying to help in any way you can while being so affected by this disease. Thank you so much for being the person you are. Continue fighting and being the inspirational, fantastic person you are.

  16. My wife has PD and my best advice is get a three wheeled motor scooter to zoom around the house in. She loves it and it keeps her mind active.
    I give her bromelain powder every day and this keeps the infections level low which I thinks helps a lot. She stopped falling when she learned to not bend over so much. This keeps her center of balance more forward. It has been two years now and we are still having a ball. Hope this helps’
    Jerry Brown 82 years old. Joan is 79.

  17. Thank you for this post.
    I am 43, and with no Parkinsons. I have a family history of Parkinsons though. Three of my uncles and two grand uncles had the disease. I am terrified that I would get it too.
    This post makes me feel better. Thank you.

  18. Thank you for sharing your mum’s story. The photos are beautiful and poignant. My mum is suffering from early on-set dementia and to have a debilitating disease suddenly hit your family is so tough. Best wishes to you all x

  19. Thank you for sharing your story.
    I was diagnosed with Multiple Sclerosis in 2011 so I can identify with some of the symptoms.
    Peace and Blessings

  20. Thank you Cassie and thank you Cassie’s mom for sharing a slice of your life. My father was diagnosed with Parkinsons recently and this post has given me an insight into what he is probably feeling. He is not as open as Cassie’s mom and to get him to talk about his illness is near to impossible. It is difficult to give moral support without knowing what exactly the person is going through. I think I might become better at conversing with him after reading this post.

  21. Great post! My sister in laws father has Parkinson’s and he underwent the surgery they offer for it. We were all skeptical on how it would turn out for him but it went amazing! He is able to live by himself now, drive, and walk without assistance. The only thing that trembles is his hand periodically but other than that, you wouldn’t even be able to know he has Parkinson’s. It was a miracle because when I first met him, his whole body would just be in constant motion and wasn’t able to do anything for himself or walk.
    A fellow at our church was recently diagnosed and he didn’t want to wait until it progressed, so after talking to my sister in laws father he underwent the surgery and unfortunately his body isn’t taking it too well and he still shakes and is falling more frequently.
    My sons grandfather was recently diagnosed as well over in Africa and he doesn’t seem to be doing well. It seems like people are becoming more aware of the disease but also becoming diagnosed with it as well. I haven’t done much research but I hear it usually skips a generation so I worry about my niece and my son.
    Good article. Insightful. Please follow! ❤️

  22. Hey dear i am a speech anad language pathologist and i have given sessions to alot of Parkinson’ patients. I want to tell you that though its a degenerative disorder still you can spend a very near to normal life if you get proper therapies and follow your therapist instructions. May God bless everyone

  23. Thank you for writing this interview and for sharing. Information about this disease is sorely needed. My father-in-law has the more aggressive form of Parkinson’s. It has changed him from an active type a personality to a veritable shut-in. It is sad to see his decline and I pray for research that will help him return to his former self. Although I know curing him is most likely impossible perhaps research will help others to stop the disease before it progresses.

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