Skip to Accessibility Tools Skip to Content Skip to Footer
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.

  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

  • Rich-Thomas
    4 weeks ago

    I talked to my Neurologist (at the suggestion of my physical therapist) about depression. My Doctor prescribed a medication that has helped a lot. I am interested in discussing how others have been affected by PD and depression. Making contacts with others with PD and sharing has helped. 9-18-19, my first post.

  • jellybean
    1 month ago

    These stories and information has been such a help for me my husband of 41 years was diagnosed at age 40 and that was only because our oldest son noticed his left pinky we thought at the time twitched a lot and asked his dad about this had he noticed his pinky and my husband thought and said yes come to think of it I have noticed that it does that on its own. So after our family telling him we were going to tie him up and put him in the car and drive him up see his primary doctor who suspected it but sent him to see a neurologist and he confirmed it. God had paired my husband with a man of god and my husband does not likes doctors most men don’t no news there. He is a family fan and they talk about a lot of stuff such as hunting he doesn’t hunt but one of his nurses does so that was the start of the bonding and the fact that he went to LSU for college and my husband is a die hard FSU fan the neurologist has his waiting rooms named after LSU saying and they would laugh about it. My father happens to see the same doctor for tremors and my dad was into Bonsai plants and knows a lot about them. One visit we were talking and he mentioned that he was so surprised to find out that his son was interested in Bonsai plants how for his age he would groom them and learned about them I think the son was 10 or 11 years can’t remember now I told the neurologist oh my dad is a bonsai master and has a lot of plants and loves them very relaxing for my dad nor 86 and had quad open heart surgery done at about my age o and my husband are now 59 so think my dad had it at about 53 or 54. Has stent in his aorta in his stomach, he has both carotid arteries with blockages but not stable enough they feel many years ago when discovered them to do anything about it they are surprised he has not had a heart attack or stroke developed diabetes affects his eyes , legs , feet and he has COPD he use to smoke quite the day the doctor said if you want to live stop smoking he did that day cold turkey he was so scared now at age 86 he is in kidney failure so is on dialysis 3 days a week they want 4 but he says no takes to much out of him. He is having breathing problems and can not walk far or go out much because he gets out of breath and legs hurt and feet but anyway my dad brought the neurologist a bonsai plant my dad had been growing the doctor was so pleased and excited he could do it for relaxation and share it with his son my dad gave him tips when he went for visits on caring for it. Back to my husband my high school sweetheart started dating when I was 15 and he was 16 my soul mate! He was out going and I was shy I was head over heals we dated all through high school then his dad got an assignment to England both our dad’s were in the Air Force retired from same base here in Florida were we live. Our senior year in high school his dad got an assignment to England I was crushed we wrote though but eventually we broke up he couldn’t handle a long distant relationship and I mean long distance we had planned on getting married before his dad got orders to England. They left the summer before our senior year we dated other people took me many months before I could do this only after making plans to go to England to visit him he wrote me very close to the time I was suppose to leave and said he didn’t want me to
    Come I was devastated I cried many weeks my self to sleep at night. Finally got over the hurt to point I was ready to date I was so mad I hated him everyone at school knew I was going and when I came to school the day I was suppose to leave it was so embarrassing for me. So I started dating other guys and low and behold I told him in about a 20 page letter it was over I have moved on and met some one special so just stay away from me. He didn’t like that and half way through our senior year he came back to where we both had lived in his own he worked and went to school we graduated and got engaged about 6 months later married December 30, 1997 have 2 grown sons good kids we are lucky one is a SSGT in the Air Force. We had many Unexpected things happen to my mother got breast cancer made it through that my oldest son was about 18 months then couple years later his mother who we were very close was diagnosed with a rare form of brain cancer never been sick in her life I helped my mom with her drainage tubes during her first bought with breast cancer I helped care for my mother in law so my father in law could go get away and hold run errands she went through chemo and radiation but her form it didn’t work she tried a experimental drug at UAB in Birmingham it didn’t work. She had tumors so deep in her brain they could not get to them to kill them it was horrible! Bob got his diagnosis and my mom got breast cancer again 15 years apart and it was stage 4 and had metastasized to her liver and spinal cord. I was crushed again I loved my mother sooo much we were close. She had hormone shot treatments she wasn’t strong enough to go the usual treatments they didn’t help and she didn’t want to go thru all the stuff she did the 1st time she died about 2 months after her diagnosis I went with her when she found out again and to every shit she had. When hospice was ordered by her pulmonologist I stayed at her house every day I slept with her at night I swabbed her mouth with water when he got bed ridden and could not eat it drink. I was in shock and mad at god why my mother a good woman best mother and wife and grandmother. She asked me please don’t let me die alone so I was there holding her hand saying no god don’t take her please! So I got in her bed and held her until she got to cold I wanted all the time I could get if feeling her skin smelling her touching her. I learned from my mother in law who was my second mom I had met her at age 15 I realized I was never going to be able to touch her , smell her , hug , laugh with her hear her call me Michele my birth name she was French Canadian and loved to call me Michele instead of my nick name Shelly! She could speak some French she could call me Michele by bell. My middle name is Anntionette she loved that too! I had a older sister 5 years older than me and on oxygen and smoking she was dipolar and one day was smoking with tank and air on and it exploded what a horrible death she was 5 years older than me I’m the middle child. I have her and my mothers ashes at my house! My husband is having bowel problems , acts out his dreams some he kicks and punches I have received some of them, is clearing his throat a lot , some nights he can’t sleep or can’t sleep because of pain mostly in legs and then arms the constant twitching he has to get up , he has hot flashes , talks to different people he thinks whilst our son was in Turkey for a year he felt he was here he would ask me don’t you feel like Justin is here or he thought he heard him , he has gotten some OCD things vacuums our porch with indoor outdoor carpet some times 3 times a day , can’t stabd any dirty dishes if their are 3 cups he has to wash them we never use dishwasher he can’t handle the fact there are dirty dishes in it. He is obsessed with washing and waxing his Toyota truck he washes it even if he knows it’s going to rain! His voice is very low and has no pitch in it by night hard to hear him and he gets mad people can’t hear him! He is worried or anxious about something he lashed out at me. He can be very mean and verbally abusive I use to not say anything about it but I do now and he thinks about it and says I’m sorry. He is on med’s for it but he has always had a temper and is kinda old fashioned man they are always right women are beneath them should work , clean , take care of house and kids , clean , grocery shop he won’t go with me it takes me to long. We are on a fixed income I look at the price of things. His sister 18 months younger than him was bipolar and once her mother died she fell apart attempted suicide like my sister did many times. His sister fell out of a chair while eating and hit her head in the floor and never woke up she lingered on for about 8 days and died in hospital. Her husband though went home he said to make sure animals had food and water but he had family doing that and he wanted to shower change clothes he came back to her room after every one else was gone and he took a bunch of pills and they found him dead in her room before his sister died. My husband can not work he is starting to have cognitive issues which he doesn’t like to admit he is and we all know it’s not his fault and he gets furious if I don’t hear him at night when we are watching tv but his voice gets so low and like I said no pitch changes and yes I have some hearing loss I have vertigo in both ears. I have had it for 17 years so that’s not fun. He is having ED problems and sex has always been important in our marriage for him. He takes medicine for it but it’s starting not to help so he gets mad about that. He gets impulsive buying swings. I have to help him get out of bed he has his legs freeze more and more his eye sight is terrible he won’t wear his bifocal glasses. He use to not be able to tolerate the heat but seems better about that since he is on the patch and all the standard med’s. We went to UAB in Birmingham Alabama and doctor conferred with his neurologist diagnosis and also feels he is medicine resistant. Went to Mayo Clinic they recommend the DBS he won’t do it yet. Some days I just want to die the stress all around me is overwhelming. My sister moved in her husband of 36 years decided he wanted a divorce she has lupus and 7 cardiac events starting in her early 4o’s she is 58 had no where to go and he didn’t care. So having to help her deal with that horrendous pain ! I now suffer from depression and see a therapist and psychiatrist! But I will be by my husband’s the love of my life and some days the biggest pain in my butt! But I meant my vows in sickness or health! So I love your info it helps me to hear other people’s stories! And learn facts from fiction and read about new thing on the horizon for Parkinson’s. Thank you for sending me free books we are poor now on fixed income so I appreciate everything I get!
    I pry to god every night before I go to sleep please mom come to me in my dreams I need you and I tell her and my mother in law I hope they are not in any more pain and I tell my mom I hope she is with her beloved poodle she had.

  • Blue
    2 months ago

    I felt I could rise to the challenge but after 12 years or so I am not making it anymore. Been through the loss and denial. Now I am just furious and angry all the time. I feel inadequate and stupid. my husband has told me i’m selfish and mean because I need to get away once in a while. I do anyway but when I come back I always feel guilty and ashamed of myself because I enjoyed the freedom.
    Parkinsons has made me so sad. I am missing out on time with my grandchildren and husband has tried to intimidate me into keeping them away. It is as though I am the prisoner of Parkinsons.
    I have tried to help him and get him into groups Rock Steady and others, but he drops away after a few months. He’s broken bones and gone through therapy but always gives up. Now he won’t eat or bathe. He won’t have anyone in the house to help me maintain it
    I could go on and on but I need to stop and help him to the bathroom. Thanks for letting me blow off some steam

  • Chris H. moderator
    1 month ago

    You’re always welcome to blow off some steam here, @blue. I can hear how incredibly difficult this has been on you. I think a lot of caregivers and care partners would agree that getting that time to care for yourself is vitally important, even though you’re met with negativity. I wanted to share an article with you that I hope can provide some ways to help navigate someone who’s refusing care: https://parkinsonsdisease.net/caregiver/tips-caregiving-refuses-care/. Hope you have a great weekend. – Chris, ParkinsonsDisease.net Team

  • stella
    4 months ago

    I believe for me the emotional experience was the thing that I hate the most. I played the guitar since I was 15 and that was who I am. It was never just a hobby. The PD messed this up and I had to let some things go. I still play some but not like before. I had a lot of depression. I got on meds and it is some better. This has helped me.

  • stella
    4 months ago

    I believe for me the emotional experience was the thing that I hate the most. I played the guitar since I was 15 and that was who I am. It was never just a hobby. The PD messed this up and I had to let some things go. I still play some but not like before. I had a lot of depression. I got on meds and it is some better. This has helped me. I also went back to playing my horn.

  • Chris H. moderator
    4 months ago

    I’m glad to hear that the meds are helping, @stella! When you say horn, are you referring to a trumpet? – Chris, ParkinsonsDisease.net Team

  • stella
    4 months ago

    Bb cornet, very close. I have put it away for many years but I’m tryiing to get it back. I don’t know if I can ever get the high notes again.

  • PenelopeS
    4 months ago

    my husband suffers from paranoia, delusions, hearing voices. When I don’t see what he sees or agree with his ideas about people, etc, he gets very angry with me. His doctor put him on Nuplazid. He took it faithfully for months, with no effect. His Dr has told him it’s from his Parkinsons and I have talked with him when seems calm and receptive. he believes everyone is against him and won’t listen. I don’t know what to do next.

  • stella
    4 months ago

    Hi, PenelopeS Your husbands,everyone is against him, I have heard that from many PD people, as I have felt this at times. I would let it go if you can.

  • Chris H. moderator
    4 months ago

    Hi, @PenelopeS – Thanks for sharing here. This sounds really difficult for you and your husband. I’m sure it’s very hard to try and explain this to him. We have some information about hallucinations and delusions here. Additionally, I wanted to share an outside resource with you. The Parkinson’s Foundation has a helpline staffed by social workers and therapists, and they may have more ideas on how to cope. Here’s the link: Parkinson Foundation Helpline. I hope this helps. Keep us updated if you can. – Chris, ParkinsonsDisease.net Team

  • swamper
    7 months ago

    I would refer you to my previous notations on these pages.

  • EugeneAbell
    8 months ago

    Great post to share.

  • Ltcol20
    9 months ago

    Do you have PD? I feel like I need to talk with someone who is living with the problems of the disease.

  • Rich-Thomas
    4 weeks ago

    I was diagnosed two years ago and would be glad to share. It can be difficult at times but the more i share with others, the possibilities to learn and “grow through it” are endless. Louisville has a great supportive community.

  • Ltcol20
    9 months ago

    Can you tell me how I can find an in person, or better, an online ongoing support group for older women with PD? I am a72 yr old female dx about 2-3 months ago. I used to be extremely active with a variety of physical activities but because of the PD I can no longer do anything. I can walk around the house for short periods then must sit down due to being so exhausted.

  • Chris H. moderator
    9 months ago

    Hi, @Donna-K – Along with the content we publish here on the site, you can always come here for support! If you’d like to start a forum to bring more conversation, you can do so here: https://parkinsonsdisease.net/forum/general-discussions/. If there’s any information I can help you find in the meantime, please let me know! – Chris, ParkinsonsDisease.net Team

  • Carolyn hill
    9 months ago

    Hi I am at alias literally as my husband has PD and I am losing h to it as there is not affection or care for me from him anymore

  • barbieN
    9 months ago

    My pleasure! If it can reach anyone in anyway, it’s worth sharing.
    Anyone is welcome to reach out to me and I’d be glad to listen and continue the conversation… 😉

  • Mommy-Girlx2
    10 months ago

    Such a timely article! My husband just turned 60 and has been diagnosed for 2 years. It seems he is trying to cram the next 20-30 years of living into the next 5-7 years he thinks he has left to live his life. All the while destroying our marriage with his frantic behavior and wanting to experience the things he hasn’t yet (probably due to being married to me for 30+ years, I guess) and spending money we don’t have now that he is on disability and having less income. It’s destroying me in the process because he has PD and thinks he can do whatever he wants because of it including seeking affection from other females. How do I compete with Parkinson’s?

  • Chris H. moderator
    10 months ago

    @mommy-girlx2 – I can hear how distressing that must be. A PD diagnosis can really make the way one thinks about life change. I’m so sorry to hear how much it’s affecting your marriage. What have your conversations with him about the topic been like? – Chris, ParkinsonDisease.net Team

  • icequeen10
    11 months 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
    12 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
    12 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
    12 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
    12 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
    1 year 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
    1 year 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
    1 year 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
    1 year 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
    2 years 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
    2 years 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
    1 year 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
    2 years 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
    2 years 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
    2 years 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
    2 years ago

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

  • Suzanne
    2 years 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
    2 years 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
    2 years ago

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

  • Chris H. moderator
    2 years 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

  • barbieN
    9 months ago

    Yes – there is loss when your life is turned upside down. It has a psychological, physical and emotional toll on the individual and the caregiver(s). It also is different for everyone as PD does come with a buffet of symptoms to each one a different variety. As a sole caregiver for my mom, I have been “mothering my mother”. It is extremely difficult at times as a “new normal” is created based on the symptoms experienced mixed in with what crisis or life challenges also begoing on in your own life. Seeing your parent change in so many ways, does change the dynamic of the relationship and there is loss and an adjustment. It involves love, acceptance, guilt, denial and sorrow. I’m a mid-life mom, running my own business with my husband and raising a 12 year old. The juggling is not the most worrisome. However, the disrupted life plans and life revolving around PD and the needs of those around you on a daily basis does shake up your world. It takes fortitude, perseverance, resilience, self-care and I believe a spiritual alignment or consciousness (whether it be with your God or something that you identify with that is greater than you that you may have a connection with on a soul level) to get you through each day. It is really one day, one moment at a time. Today is what you have, right now. It is easier said than done. I have had a life time of experiences with parenting my parents and parental substance abuse and mental illness in my family home during my grow up years. Being an only child, let’s say it was not easy. However all along, it teaches you valuable lessons in life and not to give up hope, although it may be tough, confusing, upsetting, unsettling, frustrating, crazy, funny, up and down, all around, it is not without hope! Sometimes the challenges we face make us who we are today and we wouldn’t have come as far without those experiences. How would you know?
    Having a good support network –whether through self-reliance mechanisms (e.g.meditation, yoga) supportive and engaged friends and/or family members, hobbies, group individual activities, work, pets, reading, access to websites, support groups, social media, etc., one needs to understand there are avenues and that one is really never alone. Even if it is a kind word from a stranger, a smile across from someone in the coffee shop or the clerk that wishes you a wonderful day — even a positive, daily uplifting quote or affirmation –it all matters and connects us to each other.
    Words of comfort, inspiration, support here on this forum are of great help too. Sometimes sharing, venting and seeing things from other’s perspective allows some healing and peace. At the very least, there is recognition and validation. Wishing all that are struggling and needing a smile to receive one from me today and pass it forward. We are all fighting the good fight. Blessings to you and hope things will work out as they are supposed to on wings of hope. There is always hope.

  • Chris H. moderator
    9 months ago

    Wow, @barbieN – so well said. This was a pleasure to read. You have a really insightful perspective, and I’m so glad you took the time to share your words with the community. Thank you! – Chris, ParkinsonsDisease.net Team

  • Poll