Considering the Emotional Toll of Parkinson’s Disease

Considering the Emotional Toll of Parkinson’s Disease

It was a Tuesday morning mid-winter and the snow was already falling. The forecast told for a blizzard and already the hospital discharges for the day were being delayed by family and friends being unable to come and pick up their loved ones. Judy* slept overnight by her husband, John’s side on an uncomfortable but durable cot. During our brief check-in, John and she lamented over the weather and their disrupted plans. John was hoping to head home that day in order to celebrate their grandson’s birthday. Usually it was the Parkinson’s disease that altered their plans, she remarked. Today, yet another factor outside of their control was intruding.

The conversation swiftly moved into Judy and her husband, recently retired, discussing the larger theme of canceled plans and disrupted expectations. Both had worked both in and outside of the home for their adult lives, saving up for what they hoped would have been a carefree retirement. Free of responsibility, they had expected to spend their time traveling and nurturing respective hobbies. John remarked “I thought we had time” and went on to share how he wished he had retired earlier. Judy attempted to comfort him, sharing that they could not have known or predicted his diagnosis or how it would impact their lives. Like many couples coping with Parkinson’s disease, they were coping with the loss of future they had envisioned and learning how to radically accept and make meaning of their current reality.

The emotional adjustment

In the midst of the medical treatment of Parkinson’s, it may be useful to consider how psychological and emotional processing is affecting your overall coping. For some, the emotional adjustment to Parkinson’s can be as difficult as coping with the physical symptoms. It can include coping with one’s body changing along with the need for new personality characteristics, such as increased dependence on others. For caregivers, there can be a different adjustment. Caregiving often occurs in private. Attempting to minimize the impact of providing daily support along with the personal cost of caregiving (i.e. reduced sleep) can lead to the experience of ongoing sadness, grief, and sorrow.2 People with Parkinson’s may also experience chronic sorrow related to disrupted plans, the need to ask for help and depend more on others, as well as limited socialization and challenges related to participating in former hobbies.1

You are not alone

Acknowledging the emotional toll of Parkinson’s is not necessarily easy however, I’ve noticed it can sometimes bring one to a greater sense of overall acceptance (not approval!) for the experience of living with the disease. This awareness or grieving process can occur independently, through the practice of mindfulness or prayer. It can also occur in the shared setting such as with other family members or in a Parkinson’s Disease support group. Some patients and caregivers choose to reach out to a mental health professional for support and processing especially if symptoms of depression or anxiety arise. Regardless how one chooses to cope, it can be useful to remember you are not alone and this is a part of the process of coping with Parkinson’s disease. What areas have you had to grieve since experiencing Parkinson’s either as a patient or a caregiver? How has living with Parkinson’s affected you emotionally? What has helped?

*Names and identifying information changed to protect privacy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. Lindgren CL. Chronic sorrow in persons with Parkinson's and their spouses. Sch Inq Nurs Pract. 1996 Winter;10(4):351-66;discussion 367-70
  2. Mercer CJ. The impact of non-motor manifestations of Parkinson's disease on partners: understanding and application of chronic sorrow theory. J Prim Health Care. 2015 Sep 1;7(3):221-7. PubMed PMID: 26437046.

Comments

View Comments (20)
  • icequeen10
    2 weeks ago

    To the sweet lady who wonders if she is being unrealistic with her dream to be there for her grandson’s graduation in 11 years- I say,. Live this particularly wonderful and attainable dream with each breath you take, reach to it with your clear passion,. Your strength, my prayers for you started after the second sentence. No Regrets~

  • evelyn1961
    2 months ago

    My mother has recently spent several weeks in hospital because life at home became completely unmanageable for my 82 year old father ( primary caregiver). Her day became night and visa versa. She lost so much weight and her memory was badly affected. Tho we were extremely worried & stressed, the treatment mum received in hospital was wonderful. Her sleeping pattern is restored, she eats regular meals and is more steady on her feet due to guidance from the physiotherapist. She also had suffered as a result of numerous water infections. We now recognise the symptoms and know more about when to call for help. Please don’t afraid to shout when you need help and keep shouting if necessary!

  • Jessica.Hall moderator
    2 months ago

    Hi evelyn1961, thank you so much for sharing your mom’s story with us and great advice for asking for help. I’m so sorry to hear that she had to go through so much prior to getting help, but SO glad to hear she is doing better now. I hope your mom continues on that path. Please, know this community is here for you and your family. Wishing you all well. Kindly, Jessica-Parkinsonsdisease.net team

  • annerf46
    2 months ago

    I have PD for 20 years. At first it was very debilitating!! But finally I have a medication!! My children do not come to see me anymore!! I am a caregiver to my husband who has been a invalid for 5 years. We were both devastated when we learned he would never walk again! He was my rock! Somehow God intervened and I have help 5 days a week!! Weekends are all mine and come Monday I am exhausted. I’ve learned I must have rest times and he understands for which I’m grateful.

  • Jessica.Hall moderator
    2 months ago

    That is not an easy situation to handle. I’m so sorry to hear you and your husband are going through this, but how wonderful that you now have some help, @annerf46. Please, know this community is here for you both, to support you in any we can. Thank you for sharing with us and being here. Thinking of you both and wishing you a lovely day. Kindly, Jessica-Parkinsonsdisease.net team

  • RonC
    3 months ago

    It is hard to be positive about the future when you live alone. I moved here 5 years ago and have no friends or family here that cares what happens to me. I have 3 grown kids with families up north, they know I have PD but they don’t really seem to care. They never visit and I am not comfortable driving that far anymore. I’m 72 and try not to think about the future because it just starts the depression over again.

  • Chris H. moderator
    3 months ago

    Hi, @ronc – I can imagine how difficult this is. It can be so hard when you don’t have family support. Have you ever looked into joining a support group? Many community members have found them to be extremely beneficial. The Parkinson’s Foundation has resources to help you find groups in your area: http://parkinson.org/Living-with-Parkinsons/in-your-area. Also, as exercise can be an important aspect of managing PD, a lot of folks here have talked about Rock Steady Boxing as not only a beneficial exercise program, but a way to build community with other PwPs. We have more information on that here: https://parkinsonsdisease.net/living/rock-steady-boxing/. I hope this information is helpful. Please come back anytime to share with us. – Chris, ParkinsonsDisease.net Team

  • mam2377
    4 months ago

    None of these “tolls” are going to stop me from seeing my now-7 year old grandson graduate from college. That is my goal in life, why I get up in the morning before sunrise to prepare his lunch and breakfast, why I keep moving, no matter how stiff or rigid I may be at the time. Am I being a Pollyanna or unrealistic about this? I am fully aware of what the future can hold; my Dad was diagnosed the summer I graduated from high school and died the second semester of my senior year of college. His older sister was then diagnosed with PD, but she lived close to 20 years after that, because she had Ldopa medicine. We have changed houses so that should I end up in a wheelchair, I can move around more fluidly. However, I plan to continue to exercise to maintain my balance and muscle coordination and continue to volunteer at my grandson’s school to keep my tutoring skills and brain fresh. I refuse to go down without a fight!

  • Chris H. moderator
    4 months ago

    I don’t think there’s anything unrealistic about what you’ve said, @mam2377! Having goals and ambitions coupled with exercise and activities sounds like a winning combination to me. Keep up the great work. Thanks for sharing with us! – Chris, ParkinsonsDisease.net Team

  • VanessaB
    10 months ago

    We have been lucky. My husband was not diagnosed until his mid-70s. But his first symptoms were dementia, and that has progressedLike you, I live in the day. (As much as is sensible). As long as he has three meals and doesn’t sleep through any of them I am content. We don’t go out very much but I have my home exercise videos to keep me fit, a loving family who live some distance away but visit when they can, and a dog to talk to and cuddle. I’m finishing editing my second family history book. I have a mobility plan so we don’t have to move house. All is well.

  • etsmith
    10 months ago

    For a year after my husband’s diagnosis at the age of 42, I cried a lot during commuting time but kept it positive at home. It’s now been 26 years and we have enjoyed some pretty amazing times—travel, family weddings, sharing our love of food and wine. I do find that we have to mourn anew each new loss. Our approach is to not focus on the future but spend each day focused on what we are able to do. Today we went out for ice cream and spent time with family. It was enough.

  • julnare
    5 months ago

    Etsmith: I appreciated your positive attitude. I have tried to stay away from others with Parkinson’s disease because I did not want to think about what I will continue to lose in the future. It is so sad. All the “why me” won’t change a thing. I am feeling more like I want to connect with others who know and understand what I am going through, and maybe even be able to help someone else!

  • DBezeau
    12 months ago

    I am a care partner with my husband who has Parkinson’s for almost five years now. I also identify with this article and it is right on the mark. Some family and friends do understand but many other just don’t because they aren’t able I guess. Parkinson’s is so invisible that they can figure out what the big deal is. I am so glad I found your group and it has helped me a lot in helping my husband understand too. We are in this together and we will never give up hope just because we can’t do the things we planned or wanted to do in our retirement years. We just adapt is all. In March we are going to try flying just the two of us to our son’s home in Texas for one week. I have plan A and B in my mind since we have flown there many times over the years. Thanks for your great articles!

  • Suzanne
    10 months ago

    DBezeau May I ask how you handle flying?Our last trip was so hard on him flying to Fla,I am afraid to even try to fly to CA to see our daughter.Plus seemed the change in environment,sleeping area and bath area caused so much stress?This article is right on!!!
    Thanks
    Susie

  • VanessaB
    10 months ago

    I usually say to our medical support people that the main problem is “there are no witnesses”. Our neurologist needs to come and stay with us for a week!. It’s exhausting trying to remember all the daily variations over several weeks or months.

  • PAJ
    1 year ago

    I identify with the “experience of chronic sorrow related to disrupted plans”. Do others? How do you deal with this sorrow?

  • Suzanne
    10 months ago

    PAJ,
    Yes it is so lonely–I can relate.He has had everything he enjoyed taken away.I have not found an answer yet either.We take it one day at a time and we have each other.D65 now 72 but I am sure he had Parkinson long before diagnosed-*agent orange Vietnam
    Susie

  • denimarie07
    9 months ago

    lots to think about in this article; the sadness that comes from the loss of a planned future is very difficult to come to terms with if its at all possible with the despotic Mr Parkie controlling your very being. Ten years with the despot ….

  • VanessaB
    10 months ago

    I’ve managed to park it. Just hoping I live long enough to re-enter the world one day.

  • Chris H. moderator
    1 year ago

    Thanks for commenting, PAJ. It’s definitely tough to avoid feeling this way, but while we wait for others to comment, I wanted to share a great article with you about the benefits of engagement. There’s many ways which on can engage with others and activities in order to not fall into despair: https://parkinsonsdisease.net/living/benefits-of-engagement/. I hope this is helpful! – Chris, ParkinsonsDisease.net Team Member

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