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Sharon Hampton, a former dementia therapist from Australia, was diagnosed with Parkinson's disease at the age of 49 in early 2020. Her journey with Parkinson’s began in 2018 when she experienced a tremor in her right hand, which led to a challenging and often frustrating path to diagnosis. After her diagnosis, she faced feelings of powerlessness and uncertainty, but she quickly turned to research and a strong community for support.
Sharon is now proactive in managing her condition through a combination of medication, exercise, and lifestyle adjustments. She also draws strength from a global support network, particularly through social media, where she connects with others facing similar challenges. Sharon’s positive attitude has helped her cope with the unpredictable nature of Parkinson’s. She has found solace in sharing her experiences with others and believes in the power of honesty and self-care in facing her condition head-on. Despite the daily struggles, Sharon’s journey has led her to a place of self-empowerment and personal growth, viewing her diagnosis as an unexpected gift that has transformed her outlook on life.
Okay, so I experienced my first symptoms in probably January or February 2018. I was having a slight tremor in my right hand. I went to the doctor, probably after about having it for six months, and only because people around me were starting to notice it, and said, look, you better go and get that checked out. So I went to my GP and he said, look, I'm fairly certain it's an essential tremor. I really don't think it's anything to worry about. So we left it at that. It started to get progressively worse within about six to eight months. The tremor was quite significant and was really my entire arm at that point. So I went back to my GP. He said the same thing. He said, I still think it's an essential tremor, but I'm going to give you a referral to a neurologist just to be sure. That was in 2019. Around the same time, I was going in for an operation on my foot, because I broke my foot due to some kickboxing I was doing. So I had to get that operated on. I kind of put the neurologist on the back burner. When I was in the hospital, I had the tremor quite bad, especially coming out of the operation, and the recovery was quite difficult. The tremor was worse because I was stressed, which, of course, I didn't know the correlation at the time. I actually had a nurse say to me, are you a drinker? I said, am I a drinker? She said, yes. Do you drink a lot of alcohol? I said, no, I don't drink at all. And she said, oh, okay. She looked at my hand and I said, do you think that I've got withdrawal symptoms? She said, well, that's what it looks like. I said, no, I've had this shake for a while, and I'm due to see a neurologist.
I finally went to see a neurologist in November 2019. I explained the symptoms that I was having along with the tremor. I was getting periods of very slow movement. I really felt like I was trying to do everything, and I was buried like a net deep in mud. I was moving so slowly. My writing was also tiny. It was so small, and it was really illegible. So they were the main symptoms that I spoke to the neurologist about. He did a few of the basic tests, you know, walk this way, count backward from 100 by seven, which completely threw my tremor off because I hate math. So it stressed me completely. And within about ten minutes, he said to me, yep, you've got Parkinson's. And I said, wow, okay, what does this mean? I said, you know, I'm a little young to have Parkinson's. The average age is about 80, which it's not, but this is what he said. I said, well, what can I do? You know, nutrition, exercise, is there anything that I can do as well as taking medication that, you know, he was going to give me? And he said, no, nothing else you can do. You just take your tablets and that's just that. So one of the diagnostic tools over here, we don't really have DaTSCANs or anything like that. They don't do anything like that in the medical profession. One of the tools that they use is if they put you on medication and the medication works when you go back two months later, then that confirms the diagnosis of Parkinson's. Technically, in January 2020, they confirmed my diagnosis of Parkinson's. I was 49 at the time, so that was young onset Parkinson's disease.
I guess that I felt fairly powerless, to be honest. I was familiar with Parkinson's because I'm a dementia therapist by trade, so I work with or worked with elderly people every day. The extent of my knowledge about Parkinson's was a couple of patients that I was working with who actually had end-stage Parkinson's. They were in their early nineties. And so for me, my knowledge was based upon two people significantly older than myself who are at the end stage of that disease. So my knowledge of Parkinson's was very skewed because it was based on the extreme end of the spectrum. I wasn't getting any help from medical professionals. My GP wasn't very helpful in terms of giving me any extra knowledge about the disease. My first neurologist certainly wasn't. He wasn't interested in giving me any further information. He actually told me not to even bother googling it, he said, because you know how that goes. He told me flat out that there's actually nothing that I could do that would support my coping with this disease, other than taking meds and just go home and get on with it and just wait for it to progress. So very disempowered, I think, is I was a little scared initially, but then I thought that I found that past very quickly. It was more that I felt powerless, and that made me feel helpless.
I was shocked that I was being diagnosed with this disease at such a young age. My immediate thoughts went to, well, not immediate, that's a lie, but you know, once I was maybe a week into my diagnosis, my thoughts sort of went to, well, what does that mean for my longevity and my prognosis? Because I've been diagnosed with it younger, does that mean that I'll still have the expected age span of 80 or 85 or whatever it might be? Ten years or 15 years, is that all I'll last for? Will it cause an untimely and earlier demise because I have this, or do I live a normal age span if I try and do the right things and look into it? So I was really going to the other end, really went to the other end of the spectrum thinking, well, what is, you know, what am I looking at? What sort of challenges am I going to be facing? I think that's where my research started to very much come into its own. I wanted to know what the challenges were going to be and how I could best face them.
Stress is a huge trigger. Sometimes it's not even necessarily stress as we would identify it normally. It can be stress, such as knowing that you've got to cook dinner and things have got to be done quickly, or you've got to do things in a certain order that can bring on some stress. If I'm getting ready to go out somewhere, that can cause me stress. So, you know, it's not stress as in, you need to lie down with some smelling salts. Anything that has to get your brain working and a little bit out of your comfort zone can cause stress. That's a big trigger for me. Heat has been a huge trigger, which is really handy living in Australia because it's usually always hot. That has been a huge trigger. I find that I'm really intolerant to hotter temperatures. When I'm saying hotter temperatures, we can be talking 22 degrees outside, and my body can't regulate that temperature. My face will be red and my face will be sweating. Interestingly enough, no other body parts sweat. It's just my face. So everyone can see this big, round, red, butterball, sweaty face. It's really hard to hide. So that exacerbates my symptoms, but in terms of daily management, I don't find it too bad. As long as I adhere to my med schedule. I've heard people go, you can take them later, or whatever the case may be. I definitely can't. I've tried that. I've mucked around with it to see what my boundaries are, but I know that I can't. If I start going into off time, then it takes longer for my next load of meds to work. And I have the tremor longer. The shoulder pain is significant for me. Dystonia in my right foot is quite significant, and the bradykinesia, the slow movement. So I have to take my meds on time and on a schedule. I find that the supplements and vitamins that I take very much support my well-being with Parkinson's. So I find they're quite important, too. And exercise. If I don't exercise, I really, really notice the difference. My movement, my mood, everything is just off, for want of a better word. I really have to adhere to that. I do a variety of exercises because I think that's really important because there are so many areas that we need to look out for and that we need to improve our strengths and movement and flexibility. So I try to do a mixture of things to hopefully strike a good balance.
The unpredictability of this disease and the difference, the different way it presents in different people. One day I can be fine. I can wake up in the morning and feel fine, and within an hour or two, without warning, I feel terrible. I'll be lying on the lounge and I'm aching, and I have no idea what I did because I didn't change anything. But that's the nature of the disease. I think that you have to pay really close attention to your body and to what it tells you and try and change things and move things around to actually cope with that. You need to be prepared to cancel plans and disappoint friends and family. It's something that I found really difficult to do but it just has to be done sometimes. That's one of the hardest lessons to learn, is you feel you're letting people down, and I don't like that feeling. Sometimes you have to.
My family has been very supportive. I have three grown children, a husband and four dogs, and they're very supportive, but even they don't completely understand the nature of Parkinson's and the challenges that it presents. I have Parkinson's, so I'm learning new things every day. So for people who don't have it, it's difficult for them because they don't have their head in research every day to find out new things. So when I find out new things or I see something that really describes what we might be going through at any given time, I'll send it on to my family so, they're aware of it, and that helps. I think you need to be really honest with the people around you and not try and put up a front. I did that for a long time. I might be at home, and I'm really struggling, and I'm feeling terrible but you put on some makeup, and you go and meet your friends as you planned, and they have no idea. They're none the wiser that you've had to literally drag yourself out that morning because you felt so terrible. I've been doing that less because it's not fair to them. It's insulting to them. So I try to be honest with people about what I'm going through. I know a lot of people say this, but I think that one of the most perfect things that has come out of having Parkinson's, which I never would have found had I not had it, is the support group, especially my support group on Instagram. There are maybe 40 or 50 of us that all have Parkinson's at various stages and there are people like Adam and Mark and Brian and numerous people that I talk to every day. It might just be a quick message, it might be a couple of long messages, and I know that they would be there. If I needed to phone them because I was feeling terrible or I needed to ask something, I know that I could do that in a heartbeat. That support has been invaluable for me. It is by far the most important part of my self-care, assisting me with my well-being. It is the most important part of my journey at this point, for sure, because they just understand. A lot of us have some of the same symptoms, but some of us have completely different symptoms. But being able to talk to someone who knows exactly where you're coming from has been huge, and I'm just so grateful for them.
In terms of my perspective on life, I try not to sweat the small stuff. I mean, I didn't think of myself as a complainer. I was very much always a big-picture person. Various things have happened during my life, so, it takes a lot to rattle me or bother me. So I've never really been one to complain about little things. But Parkinson's has given me a different perspective in the sense that I appreciate what I have a lot more. Yes, it's a challenge having Parkinson's, but there are diseases out there such as motor neurone or ALS, which I think are far more challenging with a prognosis that's far more just sickening. So I'm not saying I'm blessed to have Parkinson's, but I think I'm blessed to have one of the diseases that we can manage more effectively, and we have a little bit more control over our prognosis and our progression than with some other diseases. So for that, I think I'm a bit blessed. If I had to have something, well, you know, this is better than some others. We're more fortunate than some other poor people out there have to cope with. I don't worry about small things. I tend to remain calm about most things because I think, you know what? When you have a chronic illness that is challenging and does affect you and impact your life on a daily basis, you're really grateful for every day that you have. That sounds corny, but it's the truth. You know, you really are grateful for every day that you have. I wake up every morning and I go and I smile in the mirror because I woke up. I may not have had any sleep, so I may have been awake for many, many hours. You're grateful for every day. I think that in itself is a bit of a gift, really.
This year, especially, my apathy has just been off the charts all-consuming. I never, ever thought that it was something that I would feel. It was something I hadn't actually ever thought about, to tell you the truth. I'd read about it. I knew exactly what it was, but it was something I never thought about in relation to myself experiencing. I've always been fairly motivated. I love taking care of my home and my family and taking care of myself in terms of health and whatnot. But this year, I found the motivation has just been, you're literally dragging yourself to do some exercise or to get up and do something around the house. I think it's actually been a little bit better in the last six weeks or so. I'm just wondering, is that because I tried these new supplements? I'm wondering if they're making a difference. But prior to that, the apathy this year was crippling, and I was actually shocked to see my lack of motivation. I would lie on the lounge and binge-watch Netflix shows. Most of the true-crime stuff. I can't watch anyone who would hurt an animal, but I'm watching true crimes about these dreadful serial killers. And not even interested in eating. Couldn't care less whether I had something to drink in terms of water or anything. I found that that's been crippling this year, a little bit better in the last few weeks, but this year, especially dreadful.
Anxiety is definitely one of them. Depression and anxiety have come into it, which I guess all ties in with the apathy as well. Now I'm on an antidepressant, which is good. I actually didn't take it for a couple of days because I wanted to see if it was actually making the difference that I thought it was, which wasn't a very smart idea. Well, it was maybe, because now I know it is making a difference because when I went off it, it was just the difference in my mood was incredible. I was crabby and irritable, and I could feel that apathy starting to take over again. It's almost like a black cloud settling above your head. That was terrible. So I won't do that. My cognition as well. I've always been a thinker. I've always been academic, studying and reading and everything like that. And that took a downturn. I would read up to three, four, maybe five books a week, just as a hobby, just something I enjoyed. It went from reading five books a week to reading one book in maybe four months. It would take me that period of time to get through it, and I would have to push to say, I started it. I've got to finish this book. Lately, as I said, with some of the other symptoms, I've been reading a book a week, so I've got my reading mojo back for whatever reason, which is fantastic. That's something that I'm enjoying, which is great, but my cognition has been concerning me. My memory is appalling, I mean, it could be worse. Everything could be worse. But for me, my memory is appalling. I struggle sometimes with words. So I'll start speaking to someone, and the word will be in the back of my head, but it's just not coming out of my mouth. That can be quite embarrassing, depending on who you're with. Not so much with my family, I don't mind, but if you're out in public and people aren't used to seeing you that way, they're sort of looking at you as if to say, what has she been drinking? Is she taking something? So that has been difficult. I worry about my cognition probably more than anything, because I think there are lots of things that we can do physically to improve our prognosis and our outcome and our progression. But I think, what sort of things can we do cognitively to build our strength in that area and to slow down some changes? I play word games, I do all the different things that they generally recommend. I do the same sort of activities that I used to do with my dementia patients. That's essentially what I'm doing. And that's really ironic, isn't it, that I spent so long taking care of people in various stages of dementia, and now I'm using those same activities on myself.
I'm still having the issues with the cognition, that hasn't gone. It's just, you know, seems to have dissipated somewhat from a variety of things. But I was actually sitting there, and I was thinking one day, do I have ADHD? Have I just not been diagnosed? Because I have quite a number of friends with ADHD, and my eldest daughter also has it, and I think, do I have ADHD? I actually think that's what I was really looking at another diagnosis. And who knows? Look, it could still be the case, because my focus has just been, oh, horrendous. That was why I couldn't read. That's why it dropped off because my focus was just something horrific. It was terrible. But there are little things that you can do. I was chatting to someone the other day, and they were talking about putting their makeup on and various things that they were trying and they found hard, like putting on mascara and things like that. I said one of the things that I do, because I had a friend, or have a friend who's a beautician, and I was talking to her about nearly poking my eye out when I was putting mascara on one day, and she said, look, come here, we'll perm your eyelashes. I said, you'll do what? She said we'll perm your eyelashes. I said, oh, wow. And I had this vision of a big roller thinking, what on earth? But that's what I got done the first time about six weeks ago, I got that done, and she tints my eyebrows. That's made such a huge difference because now I don't need to go near my eyes with shaky hands, which is the last thing anyone needs near their eyes. It's tiny little things that you can pass on to someone else that you found out that just make the day-to-day things just that little bit easier.
I think with any illness, having a positive attitude as much as you can is one of the biggest ways to fight it. It's one of the greatest tools that we have in our toolbox if you like. For me, that's also where the Parkinson's community that we have on Instagram comes into play, because I find that they're almost like my cheer squad. It doesn't matter whether they're sharing something that's worked for them or something that they found is really helpful, or whether they're actually sitting there and showing their real and vulnerable self and saying, I'm having a terrible day. This is what's happening to me. Because even when you see that, as much as it saddens me to see that for the person, you think to yourself, they're no different to me. I'm going through exactly what they're going through at any given time. And so that realness and that vulnerability is empowering because we're all experiencing it and showing people that that's what we're going through, that honesty is powerful. That's a really powerful tool. I think that honesty is one of the biggest things that the Parkinson's diagnosis has given me. I was a real people pleaser. I'd do anything to keep the peace and all of that kind of thing and put myself last very much. Now, I'm not saying I push everyone aside and put myself first, but being honest with people about really how you're feeling at that time and what your capacity is at that given time is one of the most important things we can do.
If you're not heading in the right direction and you're not doing things that allow you to be authentic, then the universe will give you something to make you think about changing your ways. Parkinson's, in a way, has almost been like a gift, as silly as that sounds. It sounds like an oxymoron, doesn't it? But in that way, Parkinson's has almost been like a gift for me because it's turned around my attitude to so many things, especially to myself. And if you're not taking care of yourself, you can't take care of anyone else.
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