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.
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.
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.
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.”
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.
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.
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.
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.
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.
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.
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.