Living with Parkinson’s Disease

Living with Parkinson’s Disease

This blog post, for all intents and purposes is about living with Parkinson’s disease (PD), from the view of the sufferer and from those in their support circle, those affected by their loved one’s affliction. It is a rather long blog, as blog posts go, but I think it has a lot of good things to say and acknowledge, if only to see and understand the enormity of having such a disease.

My wife Denise, who I have known for 40 years, and have been married to for 37 of those years, is the kindest, most loving person one can imagine. She is, for lack of a better term, my soul mate. I have felt privileged from day one to travel with her on this journey we call life. You wouldn’t know it from looking at or listening to Denise, who has always been upbeat and has rarely complained about her lot in life, that she has suffered greatly when it comes to her health over the years. We have teased on the rare occasion that when we got married our vows were misinterpreted. Instead of in sickness and in health, we thought it read, in sickness and the occasional bout of good health. As we have traveled through life, I have often thought that the higher powers that be ask far too much from her, and that someone so kind and loving should not have such a burden of ill health to carry.

When I met Denise, she was already a long-time sufferer of Crohn’s disease and Ulcerative Colitis and over our time together, she has been asked to carry more ill health than anyone ever should. This has included multiple heart attacks, cardiac arrest, bi-pass surgery, and a lifelong blood disorder called Essential Thrombocytosis, all culminating in a permanently damaged heart and a daily regiment of more meds than you can shake a stick at. To top this off, as Denise has aged, she has received cataract surgery in both eyes for deteriorating eyesight, and recently, she got hearing aids to alleviate the stress her ever-increasing deafness was having on her relationships.

In about 2010 or 2012, Denise noticed that she had tremors in her hands and a trip to the neurologist confirmed that she had Essential Tremors, a condition that looks like Parkinson’s disease, but where the tremors occur only when using the hands. This was just something she was going to have to live with since there was nothing to be done about it, pills or lifestyle-wise.

In early 2023, Denise, at age 68, was finding that her Essential Tremors were getting so much worse and she began to fear that she had developed Parkinson’s disease. After a short wait and then a visit to the neurologist, it was confirmed that she was already in stage three of Parkinson’s disease. It seems to have been progressing quite rapidly and the change from one to the other was often just denied or ignored by both her and I. After all, who wants to acknowledge that more struggles with health are in the cards.

I decided to do an interview with Denise about her struggles with Parkinson’s disease. I will intersperse some of my own thoughts and feelings within the dialog below. As I indicated at the beginning, it is quite long, but perhaps you will find some comfort and insight into your own health issues, if you suffer from such things.

Denise Cheke at Home in Saskatoon – Photo by Don Cheke

Note that I caught Denise on a rather difficult day for this interview, but I think her answers touch very well on the struggles that such a disease brings along with it.

Don: When did you start to think that you had Parkinson’s disease?

Denise: I’m not exactly sure. I’ve had what I assumed was Essential Tremors in my hands for at least eight or ten years. In about November of 2022 I started to notice different kinds of symptoms, in that the tremors were different, no longer just when I used my hands. I first noticed my little finger started vibrating when it was at rest and then I noticed that my thumb and forefinger started tapping together and finally I noticed that my arm started wobbling uncontrollably. This was all on the left side. In January of 2023, I decided to ask my family doctor to refer me back to the neurologist to see whether things were changing in terms of the Essential Tremors, or to see if something else was going on. While I was waiting for that appointment, I started doing a bit of reading and I began to recognize myself in many of the non-motor symptoms of Parkinson’s as well as the motor symptoms. I began to question whether PD might be a possibility or not.

My thoughts…. I remember this time well. I tried to minimize the worry about it by telling myself that it was still just Essential Tremors. Although I was always supportive of Denise’s feelings and we talked lots, I really just wanted to bury my head in the sand and pretend that we weren’t going down the road to where these new developments were seemingly taking us.

Don: When you first saw the neurologist in July 2023 and he tested and confirmed that you had Parkinson’s disease, what were your initial reactions to the diagnosis?

Denise: I think I went into shock and initially I thought he must be wrong, or I guess I was hoping he was wrong because I didn’t really think it was that bad. I also thought that maybe it was just me imagining that I had it and that it had become a self-fulfilling prophecy. So, I think I initially went into shock when he said it, and then denial and doubt, and then a whole bunch of the other stages of grief. But for the first while it was shock and denial and doubt.

My thoughts…. I was with Denise when she was tested and received the diagnosis. I too felt shocked at the outcome. We were both so stunned, that we didn’t even think what questions to ask when the doctor inquired about any we may have. In the end, he gave Denise a prescription for some meds and said that he would see her in a year. After leaving the appointment and thinking about what we might have asked we both felt that we had been handed a life sentence and let go to flounder on our own.

Don: How do you deal with PD on a daily basis? Mentally, physically, emotionally?

Denise: Well, that depends on the day. Some days I just carry on without thinking too much about it. Other days, when the physical symptoms seem to be magnified, then I find I can be quite discouraged, and I have to work really hard at staying in today, because I know that it’s a progressive disease and it’s not going to get better, it’s only going to get worse. On the days when it feels to me like it’s getting worse, sooner rather than later, I find that very discouraging, both emotionally and physically. I try to remind myself to do things like stand up straight, don’t shuffle, take your meds, rest when you need to. Some days it’s a challenge. It would work better if I could just not think about it, but it’s there all the time.

My thoughts…. To me, it seems that the progression has been rather fast and when Denise talks about new or upcoming symptoms, I feel quite terrified of what is to come. I too, try my best to live one day at a time and that helps keep me grounded and free from fear, but as Denise says, the disease is just so in your face, as that saying goes. I have gotten used to Denise’s tremors, so that is good. At the beginning I might have felt that she could control them if she tried, not really, since I am not that ignorant, but more and more I know she is not choosing this, any more than someone chooses cancer, so I can, and have, become accustomed to it.

Don: How does PD affect your daily routine?

Denise: Well, so far it hasn’t affected it significantly. It takes me longer to shower and get dressed in the morning. I’m finding that I am feeling a lot less stable on my feet, even when I’m walking around the apartment. My husband has started doing things for me, to make things easier, like cutting my meat at mealtimes. I find the act of eating very frustrating, because it’s difficult to get the food into my mouth and so I have to adjust how I sit and how I try to eat.

My thoughts…. I think it affects Denise more than she is willing to accept. I see how she shakes, even when just standing, and I see how tired she is most of the time. She always tries to put on a brave face, but the changes are obvious to me, especially since she feels free to let her hair down with me, so to speak. It is quite disheartening to see the strain it places on her and how much she has had to change things in her life. The disease just seems to be taking such a toll on her, beating her poor brain to a pulp.

Bruiser Clip Art – Created by Don Cheke

Don: Have you had to give up anything since the onset of PD?

Denise: Yes! So far, I’ve had to completely give up writing in my journal. I haven’t been able to write in my journal for months. I am finding it more and more difficult to sew and quilt, which was one of my greatest pleasures, but now it has become an exercise in frustration, and it takes more motivation than I seem to have. I’ve also had to give up a service position within Al-Anon that required writing. So far, I haven’t had to give up any major things like driving or anything like that but, there have been moments when I’ve looked into the future and thought about what that will mean with regards to those major things. But so far, I’m blessed that I haven’t had to give up too much, except for the sewing, which really bothers me.

My thoughts…. I have watched Denise’s daily routine change so much, so much more that she has stated. She can no longer put makeup on for fear of poking her eye out. She can no longer take pictures, something that had always given her much joy in the past. She certainly has less stamina for going out and about and she seems a lot more depressed than she ever used to be. I do my best to adapt, and I think I do a pretty good job of it, but it is sure hard to watch the woman I love deteriorate in the ways she has no control over. I have promised her time and again that I am here for the duration, and I will provide care in whatever manner that requires. I will nurse her if it comes to that point.

Don: Have you been able to adapt to any of things that you have done in the past with new methods that you can manage with PD?

Denise: I’m trying occasionally to use voice to text when it comes to sending text messages, but I’m not terribly comfortable with it yet, and I don’t always like to be talking out loud and have everybody hear what I’m saying, or texting in this case. I haven’t found a voice to text for emails yet that works well for me. I bought a cane and tried using that for a couple of weeks but found that it was making me feel much more incapable than I want to be yet. I’ve had to give up things like taking pictures, but I am currently sorting my pictures and organizing them, so hopefully that will continue to bring me a little bit of pleasure. I haven’t found any other adaptive devices yet other than sitting down in the shower. I think my last experience in the tub indicated to me that those days are coming to an end. I probably shouldn’t be doing this interview today because I’m really feeling the effects of my Parkinson’s today.

My thoughts…. Denise mentioned about not being able to take a bath. The issue is that once she is down in the water, she can’t manage to get back up. I tried to help her out during this last bath she spoke of, and I just couldn’t manage to be of any help at all, due to my own issues. That really gave me pause to think how I would manage if things ever got so bad that we couldn’t manage at home by ourselves. I really don’t want to think about that, and for today, I don’t have to.

Don: How does PD affect your relationship with others?

Denise: That’s really hard for me to answer because I’m not sure how it impacts them. I know that my girls, my granddaughters, sometimes worry that I’m getting old, or that I’m mad at them because I don’t have a smile on my face, due to the “Parkinson’s face” (stiff emotionless face) that comes with the disease. The older one holds my arm as I’m walking across the parking lot. So, I think they worry about me. I know my daughter worries about me. Her worry comes out in terms of trying to find solutions or make suggestions for how I can cope. My husband worries about me, I’m pretty sure, but he’s so far been just extremely helpful. I don’t know if everybody that I’m in relationship with has done as much reading or has the knowledge about some of the less visible symptoms that I find difficult to live with. So, I don’t really know how it affects them. I guess you’d have to ask the people that I’m in relationship with.

My thoughts…. For me, the hardest thing, as I mentioned, is to have to watch my love struggle with all the symptoms of the disease and with the finality of the disease itself. As the neurologist had stated, it’s not a death sentence, but it is a life sentence. As Denise and I have traveled through life, we always found ourselves traversing the health issues, knowing there was always hope of coming through them, either completely or, at least, without severe continuing trouble because of it. We both survived heart attacks, we both cope and survive with our colitis, but here, with PD, there simply is no real hope, just the opportunity to deal with it, one day at a time, and hopefully still thrive. Denise mentioned that our daughter’s worry comes through when she sees her wanting to find solutions. I am like this too, always wanting to find ways to help Denise manage. Just today, I thought of a way for Denise to still take pictures with her phone. It requires a tripod and voice activated snap. It means more planning and effort in one way if she chooses to do so, but it would be doable. Ultimately, it will be her call.

Don: How has PD affected your spiritual or religious beliefs.

Denise: Well, it has affected my religious life because I like to go to church, but I don’t have the get up and go to get up and go on Sunday mornings. I haven’t come around to deciding whether I should go on Saturday evenings because I am usually just as tired then. I would still like to go, and sometimes I think I should just quit being lazy and go, but that is just my denial talking. In terms of my spiritual beliefs, I’ve always had a pretty decent trust in my higher power, and I will continue to trust that. When I get mad at him for stuff like this PD, I know that I’m not going be voted off the island. To be honest, I am so mad at him because of this latest health issue; I just don’t want Parkinson’s, I just don’t wanna have it. I just wanna be me again!

My thoughts…. It is so easy to feel Denise’s pain. I can only imagine what a sentence this Parkinson’s disease must be for her. Yes, I can and will travel with her, but I can’t truly know what it is like to have it. It does not look like much fun at all!

Don: What do you take for PD meds? Are they as effective as you hoped?

Denise: After last weeks appointment with the neurologist my, Parkinson’s medication, which is the gold standard, according to Doctor Eric, is Carbidopa / Levodopa. He has increased it from one tablet every four hours, four times a day to 1 1/2 tablets every four hours, four times a day. The increase was because I was finding that the positive effects were wearing off before the next dose. The meds seem to help sometimes, some days better than others, with the stiffness, the shuffling, and the aching. It doesn’t help a whole lot with the tremors, although maybe it does because I haven’t started seeing tremors in my legs or feet yet, so maybe it’s slowing the symptoms down a little, although it’s not supposed to slow the progression, it’s just supposed to mask them. The doctor also started me on a nighttime medication, which is an anti-anxiety medication that’s used to treat REM sleep disorder, which, in my case, is where I would act out and kick and punch in my sleep. It seems to be helping, although I think it’s making me groggy in the morning so I might need to decrease the dosage.

My thoughts…. {As you will have noted in Denise’s last response, she was able to get back in to see the neurologist after about six months, rather than the year he had said.) Between Denise and I, I think we keep the pharmacy in good stead, although Denise takes many more meds than I do. Between all the required drugs for her various ailments and all the drugs to keep her from throwing up all those meds, it isn’t any wonder she feels “off” numerous times a week. The hardest times for me is when I see her lying on the bathroom floor after a night of diarrhea and vomiting. As I said, Denise is quite remarkable as she just gets back up in the morning and carries on as though she hasn’t just survived another horrible state. She puts on her best face and carries on with her plans, which generally means seeing her loved ones in some form or another.

Don: Are there any recent advances in the treatment of PD that you are aware of and hope to take advantage of at some point?

Denise: I’m not really up on the most recent treatments or anything. Certainly, one that’s been around for a while is deep brain stimulation, where they go and implant a device into your brain that can control tremors. It is my understanding that you have to meet a list of criteria to be qualified for that and that one of the things is you have to have been on Levodopa for a number of years and are finding that it’s no longer effective. If it were offered to me, I’m not sure whether I would be willing to do it, to take the risk. I would definitely want to do some research into it. As far as other treatments, everything that I’ve read says there are no cures for Parkinson’s. They are constantly trying to see if different medications will work with PD related things, but other than a cocktail of medications to help control some of the symptoms, there’s nothing that slows down the progression.

Don: Do you think there will be a cure for PD in your lifetime?

Denise: They’ve been working on it for at least 50 years and they’re no closer to a cure as far as I know. So, I don’t hold out any hope for that.

Don: Do you feel that friends, family, and others out in the world at large understand the full ramifications of having PD?

Denise: I don’t think people who aren’t directly impacted by PD know a whole lot about it without having done some reading or joining a support group or something like that. When you look at the literature that Parkinson’s Canada sent me, you see so much more than you would think was part of it. Everything from losing your sense of smell to sleep disorders, to constipation, to extreme fatigue during the day. Feeling like your whole body is trembling on the inside, even if it’s not on the outside. Headaches too. It’s like there’s just so many things. Stiffness, shuffling gait, PD face! There’s a whole book written about some of the things that sufferers of PD experience and unless people are learning about it, they just think it’s tremors. How bad can it be?

Don: From your point of view, why is it important that people, especially those around you, understand PD?

Denise: If you think about things like my PD face, I don’t want people to think I’m mad at them all the time. I don’t want people to think I’m depressed either, although sometimes I am, but I’m not that way all the time. I just don’t want people to make assumptions based on those things, or other things such as needing to sleep during the daytime because I haven’t slept all night. I want them to know it’s typical of Parkinson’ and I am not just tired or lazy, or that I just need to get up and get moving. You need to do this! You need to do that! Most of that might be just going on in my own head, but I’m afraid that I will be judged for not being able to be the person I am or that I used to be. I fear that people will say that I am not doing well with PD, that I’m letting it manage me instead of me managing it. That I should just put on a happy face and carry on.

My thoughts…. I personally think that Denise is managing very well, especially with the diagnosis so new in her life. I know that she had PD long before we got the confirmation, but that confirmation just laid bare the reality of it. I see Denise go through the stages of grief over and over as I would expect anyone to do. I also know that she has a spirit so unlike what one might consider typical, and I know she will continue to be the best she can. The fight will not beat her completely down, but she will take some punches.

Don: What are your thoughts about the future?

Denise: I have lots of fears. I have a fear of not being able to be independent, not being able to drive, not being able to walk, having to be in a nursing home. I have a fear of not being able to remember anything, of getting Lewy Body dementia; of having no quality of life. Part of me knows that these things might not ever happen, or it might not happen for 15 years, but it’s not the way I envisioned my retirement. It is not, and yet it is now part of me, like it or not. Sometimes I think, just call MAID (medical assistance in dying) and pull the plug, but that is just exasperation from having to deal with so much. I’m not gonna commit suicide, so you don’t have to worry. I don’t have a plan.

Don: What are some of the tools you already possess that can help right now?

Denise: Well, I’ve learned a lot over my years in Al-Anon about staying in today and such things as “this too shall pass,” although this PD won’t, and I’ve learned to use numerous other tools that I learned in Al-Anon. I know I should surround myself with friends, but even that feels like too much effort today. You know, like, I know I should contact Mary, I know I should contact Judy, and I know I should contact Connie and I know I should contact others, but today it just all feels like too much effort. And yet I need to surround myself with positive people. I can’t just live under a rock. I do have tools. I can go to my counselor. It too feels like too much effort. Just some days though, not every day and not all the time, but some days. It just all feels like too much effort. I don’t know if that’s just me feeling sorry for myself or if that’s just part and parcel of the Parkinson’s and living with it.

My thoughts…. I’d say it is just part and parcel of the process of grieving. Some days will better than others. Denise’s normal is very positive, so I feel she will manage her Parkinson’s in the best way she can, with support from her loved ones.

Don: Do you have any final thoughts on the whole PD business?

Denise: I wish I could go spring clothes shopping. As your mom always says, retail therapy! That’s not going to happen any time soon, but I think that would be something fun to do. 😊

End of interview.

To wrap up, I would just like to add, that although I know Denise has had, and continues to have a heavy burden, health-wise, I know that she is not alone in it. As her husband, I feel the burden of it as well. I am happy to be in it with her, as the great friends and support we have always been to each other. I have no doubt that we will continue the journey in the same way, no matter what Parkinson’s throws our way.

Donald B. Cheke – April 8, 2024