Finding Joy in Parkinson's

Hi, my name is Kathleen Mier. I am a Cajun from South Louisiana. My husband was diagnosed about three years ago. I am convinced that he had Parkinson's for several years before diagnosis. Louis and I have been married for almost 47 years and many years ago, he became delusional about my "hitting" on other men, one of whom was a young son of one of our friends (How awkward!). Anyway, with the diagnosis and Sinemet, Louis is not jealous of other men. Now, Louis has had 2 very bad hallucinations, one of which scared me so much. He was put on Nuplazid and those have stopped. We are still battling PD on a daily basis - like all of you. Louis has sleep issues, like many of you. He had a spell with akathesia and he has frontotemperol dementia. JOY - that's my goal! And I've learned to thank God for everything we're going through. I have to believe that there is a purpose for EVERYTHING. I'm so happy to have found this site. I plan to refer to it often. Thank you.

53 Replies

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  • Welcome, Kathleen. In retrospect I had Parkinson's symptoms for many years prior to diagnosis, so yes that is common. I actually did find a bit of joy in my diagnosis because that meant there was treatment for the symptoms I was having.

    Glad to know the Nuplazid does what it is supposed to.

  • Kathleen.

    It must be the devils work for having Parkinson's for 8 years, it feels like I carry a cross every hour of every day and night. The cross is the added burden of dealing with every day life while you are strapped to a large very heavy anchor. What used to take 5 mins can now take for ever.

    The lord only made his only son carry the cross once!

    However the Good news is if you get the meds right, there is relief, sometimes better than others, like now my Simenet is working and I am able to type, and feeling good (Maybe 2 hours) and then I have to start again.

    They are going to find a cure because it is crippling very able people from getting on and helping others.

    Keep smiling, every day is special !

    Best regards

    Alistair Sutherland

    Grannymarys.co.uk

    Matlock

    Derbyshire

    UK

  • Alistair,

    It was so good to hear from you! I hope that I didn't sound like everything is a "bed of roses" here because it is not!!! Sometimes, I think that I'm not the best caregiver! I know that Louis is really suffering! We have good days and not so good days! It's always a balancing act. Louis is hardly able to do anything for himself. He has trouble hearing (with aids) and seeing and walking, of course. The dementia doesn't help either! But our five children and 13 grandkids keep us busy. Stay in touch!

  • Kathleen,

    Thanks for your reply, my wife is a senior nurse and I tell you she has worked in children's ITU, (where little babies die) and we love each other a lot, and we noticed something was wrong with me on our wedding day, and she struggles to deal with it, on a day to day basis, as she sees me suffer, albeit I try to limit her exposure to my dark side, where sometimes it is so bad I want to leave the party! and meet my maker.

    You can have Parkinsons for up to 10 years before you get symptoms! I am told.

    I have been lucky I have made 60 years and have done everything and more, have two beautiful children and my wife is my best friend.

    Treat the Parky as a unwelcome guest in your house, do not let him in -

    he is not your husband - try to separate the two. I fight him often, and beat him up -it helps to vent your anger on Parky not your beloved -if that makes any sense .

    Regards

    Alistair

  • Treasure those kids and grandkids. They are our greatest blessings. 3 kids and 8 grandkids. Dont blame yourself and take it oneday at a time. We do our best and thats all we can do. Blessings

  • Kathleen , in response to your post. I have been diagnosed since 2004. As many others I experience ED which at least in part is associated with PD. My neurologist has asked me to watch out for Hallucinations. I have double vision which is treated with Prism Glasses. This has reduced the effect, but not eliminated it. In my experience the hallucinations. Are a visual phenomenon , occurring in bad or low light. In full light, I will some times see a double image. They amount to mirror images, one virtual other real. Have a wheel chair van, stirring down the ramp can be a major problem, once unintentionally drove off the side by mistake. Miss identified a virtual image as real. As read the description on your post, seems more like an episode of REM Sleep Disorder which I have also experienced. I strike out, like I am actually fighting, have struck my spouse her violently . Was titrated on Melitonan 10.mg by Neurologist to remediate. Witnessing an hallucination and acting out a dream seem to me as very different.

    Wanted to share this perspective with you.

    BillDavid

  • BillDavid,

    Good to hear from you; sorry to hear of you difficulties. For what it's worth:

    Erratic and therefore uncorrectable double vision and (in my case audible) hallucinations were just a small part of my hellish reaction to a prolonged exposure to MIRAPEX. It took 2 years to kick the Mirapex habit, including nearly a year of being mostly bedridden, due to a devastating loss or energy during the withdrawal.

    Today my eyesight has returned to normal, I have no hallucinations, and I have a good energy level. I have successfully kicked the Mirapex habit, but it was a 1 1/2 year battle. During the bad times, I could barely read, due to double and blurred images, until it occurred to me to try an eye patch. That helped a lot.

    I reduced my meds to Sinemet (4 x 1 1/2) , Azilect (1x), and 4x 2T coconut oil (daily) and am quiet functional. I walk unassisted around home, even outside on my small farm (Uneven ground). Not as peppy as a decade ago, but who is? I do carry a cane away from home as extra insurance against falling, although I never have. This is a major improvement over where I was 2 years ago. PD is bad enough. Sometimes it is hard to know if it is PD or the designer meds that are causing the grief.

    I have enjoyed our discourse in the past and wish you the very best.

    Wes

  • Hi Kathleen.

    I was diagnosed with Parkinson's back in 2012 with symptoms going back many years before that. The symptoms, and the meds cause my family and I many challenges but just like you two with 40 years together we have learned to cope with them. The life that my family and I had is gone but our love and respect helps us live the new life that 'life' has presented to us in a positive way.

    Our togetherness has always been a source of great joy to me, I refuse to allow Parkinson's to change that. Some days are easier than others but that's why sometimes we need to dig deeper, being positive as we come back up is often the biggest challenge of all.

    Best wishes from the UK.

  • I don't believe there is any 'joy' in having Parkinson's disease. It serves no positive purpose and I have nothing to learn from watching my husband suffer.

    However, I do believe that we can overcome since things, others are not realistic to overcome, and make the best of what we have.

    We, my husband and myself, can still get pleasure from walking in the woodlands and watching our grandchildren grow. The grandchildren bring fun and laughter.

    Everyday is a new one and a bad day is just that - a bad DAY. The next day he can be feeling more positive and then we can enjoy that. The bad days need to be got through. I do that by accepting this is what it is. It's Parkinson's disease, we did nothing to 'deserve', it's not a punishment and it's not a 'cross to bear'. It's not something given for either of us to learn from.

    It is what it is, a cruel disease. But we will continue to enjoy the times we can and are lucky in having wonderful off spring who are very kind and supportive and good at chivvying him into positivity!

    We'll wait for his meds to be reviewed and see where improvements can be made. Take a healthy diet and I'll keep being positive when he can't be. Tomorrow is not here yet, today is a good one.

  • I don't think she means that there is joy in having Parkinson's ,but that there is joy in having the right DX,

  • There is no JOY in PD. You're right. There is no joy in going out to dine with a group of people who have no clue what you're going through! There is no joy in having your husband wake up in the middle of the night pulling on the footboard so hard that it broke. There is no joy in watching/feeling your husband pull my fingers one by one to loosen my hands as I pulled the spindled footboard away from him. There is no joy in having him put his hands around my neck in his hallucination or delusion or bad dream or whatever you want to call it. No, he did not remember it. He said that "he did nothing wrong". Yes, he got angry because our son came and remove all of our guns from the house. As an avid hunter in the past, he must have felt that his manhood was taken away. That day, the neurologist on call took him off the Stalevo and the Quetipine (sp) and put him on the NUPLAZID. He's also on Remeron at night with his Sinemet. Anyway, the only way I can make it as his good caregiver and loving wife is to try to find Joy in life!

  • Bless you. We may be distant, but we are not strangers. We care.

  • I think you've pegged PD correctly. I totally agree with you.

  • It is what it is is how I cope with it . We have to deal with all the symptons and side effects of meds Do our best .

  • Welcome to our community Kathleen. This site is chucked full of knowledgeable people that are battling with PD. I've heard of the symptom of delusions and hallucinations with PD but know nothing about it first hand. I'm sure it must make your life and his very difficult.

    I'm believing that you will be able to help most of us here more than we can help you. This is a subject not talked about much on this site and I for one am looking forward to hearing much more about it.

    When your husband has hallucinations does he realize he is hallucinating or does he think it is reality? Are the hallucinations unclear like fuzzy in peripheral vision, or is it clear?

    One thing I have learned is that there seems to be no end to symptoms for this disease, it effects everything. I laugh when some of my acquaintance say something like ...." Oh yeah...Parkinson is that disease where you sake." They don't have a clue.

  • Hi Teresa,I have also learned that your entire body seems to be affected in some way. A friend of mine said she had never known people with Parkinson's had pain. Oh, that it wasn't so! Back pain, shoulder pain, knee pain, all on the affected side conspire to make exercising a real challenge. I know that walking is a real challenge for you, as it is for me. I long to do things with my grandchildren, but find activities are very limited. Even going to the movies feels difficult when face with going up the stairs to a seat. It's difficult to understand why some people have no problems walking, while others struggle. I hope and pray that there will be some relief on the horizon for everyone soon.

  • Louis and I love to go to movies! The stairs are impossible for him. I wheel him in in his Drive and we sit in handicapped area. Just saw La La Land!

  • Theresa

    Louis did not remember his hallucination the next day. He could not understand what all the fuss was around him was about. The children took turns staying with us for a while. He did get upset because they took all his guns out of the house. Louis loved hunting before he got sick! When Louis started breaking the bed, I called our son. I was so scared! He told us then that there was something under the bed. We pretended to check and he said it had "gone into the hole" at which he was pointing. Days fire, he finally accepted that something had happened. Thank you for sharing!

  • I'm glad u have found joy in your husbands illness

  • There is no joy in our future my husband of 44yrs is only staying with me because of our contractual marriage agreement thru thick & thin he is miserable

    I look after All my PD associated issues on my own

    he is ashamed to be seen in public with me

    My family have nothing to do with me because of my husband

    The only joy I have in my life is 2 of my grandchildren

    I'm unable to live on my own & have no one else who wants to take on my illness

    I don't expect anyone's help but joy is not a PD adjective

    Parkinson's is not a death sentence but it is a life sentence

    My life sentence that i try to manage

    but to have someone slap me in the face with saying they r joulyful because their life partner has this dreadful illness .......

    Is beyond my comprehension

  • Thanks Kathleen

    I have decided to move out of my husband's house & into a home at least I can give him back joy into his life

    My final gift to him xx

  • Good for you Maxkas - more importantly it will put some happiness back into your life instead of having to live with a resentful husband. I have PD too and I know it's not easy but at least we can surround ourselves with friends instead of pretend friends.

  • I'm feel so sorry for a spouse who cannot/will not be a good caregiver! I wish I could be near you to be your friend.

  • I am so sorry! I never meant to "slap you in the face!" I am truly sorry that PD is making you so miserable! I did not mean to upset you!

  • Welcome Kathleen - I hope this site gives you many answers and support as issues come up with your husband. Everyone's symptoms seem to be different but there is always someone out there who seems to share them. My husband has had the hallucinations but luckily they are being pretty much controlled by medication. Like you I feel he had PD at least 5 years before he was diagnosed. After diagnosis he was able to work for many years. He now is diagnosed 15 years (hasn't worked the last 7 years) and still walking. The last two years he has had speech problems, dementia, vision and rigidity. It's been a slow downward progress but we have had many happy years together and still have good days we enjoy together.

  • Wow! Sounds just like Louis!

  • Yes Kathleen you are an inspiration to us all to keep the faith. God does have a purpose for each of us.! The purpose will be revealed to each of us at the appropriate time. God loves us ! So keep up the faith ! We will all follow you ! With Blessings, Pam cota

  • I'm sorry, but I take exception to being spoken for. ".....inspiration to us all to keep the faith" and "We will all follow you" appears to speak for everyone but I for one am not inspired to have any faith or to follow one that has. I respect anyone's right to believe what they want, and I AM inspired by people fighting this disease or caring for one that has it but please don't include me as a believer in what I consider to be total nonsense.

  • Oh my! I am so sorry! I did not mean to hurt you! I am NOT asking for a "following!" None of us are! But, at the same time, I believe that if someone writes something that could easily be misinterpreted - that maybe, just maybe, we could all be more tolerant!!! It was my very first post. I just shared a little personal something that sent some of the readers on a horrible tangent! NONE of us need that ! We are all battling the same monster!!! I'm sorry!!!

  • My post was not directed at you, Kathleen, but to p-p-. While I may disagree with some of your opinions, you are entitled to hold them and in no way do you hurt me by doing so. Indeed, the post I was criticising did not offend me either - it just annoyed me that it assumed to speak for all of us. I am sorry my post misled you.

  • Regardless of which post you disagree with, we all have to be patient with each other! Louis and I belong to the Movers and Shakers PD group in Baton Rouge. We all go there willingly. The meeting is held at a church and always begins with prayer. One day, someone said the "Turn it over to the Lord" thing and this lady popped out crying and ranted and raved about how she hated Parkinson's and it had made her and her husband's lives miserable! The room got silent and one by one we got up to hug her! I don't think a single person on this forum would intentionally hurt anyone. Parkinson's hurts enough!!

  • No more references to any religions would help a lot to make this a site that all feel welcome. I do not hold with the Christian faith and beliefs. I am not alone. Can we please respect this and if you must discuss religion then do this through private messages to the like minded. I do not want to read a sermon nor feel either excluded or to be insulted because I choose another path.

  • How daré you? Just because you don't belive in God you want to take my, God given, rights away and not mention His name! Belive or not, you have no right to tell me what to say or not say nor where to say it. I pray to God every day that he shows me the way to deal with my PD, I will do my part.

  • I am not taking away any right. Here in the UK it is my human right to practice my own beliefs along with every other individual. I simply asked that your religion, nor any other, should be evangelised in this site.

    I have not expressed my own beliefs, in fact I rarely do because I believe that everyone has the right to choose their own path without prejudice nor pressure to turn to one religion or another. A few years ago I would be burned at the stake for having such beliefs and to be honest there are some who would still do the same.

    What you are failing to realise and accept is that those who do not share your beliefs will also not share in the 'rights' given by your God.

    I agree with you, I do not have the right in a country that still has the right to free speech (more or less) to tell you what to say. However, there is an ethically right and wrong place to express these beliefs you have. Particularly when they are affecting the rights of others to carry on their lives without pressure to be a part of your religion, nor any other religion. This is not the place to argue which religion is right or wrong. I am simply asking that you respect the belief of others.

    Christianity is no longer the dominant religion in the UK. It is not a 'taken' that we are all Christian. We have a multi racial society that functions quite well and on the whole I find that each is respected for their own view.

    I am pleased that you have a way of dealing with your Parkinson's Disease. However, please bear in mind that along with Parkinson's disease being different for each individual, this concurs with the way each individual deals with Parkinson's Disease.

  • Let me apologize right now if I have offended anyone. If you knew me, you would know that I would never want to do that! I've got enough on my plate. That was my first post and I guess I'm outta here!

  • Kathleen, I saw fit to welcome you here and I am not a Christian. FWIW I took your comments as simply reflecting your own beliefs and not as proselytizing.

  • Thank you! I'm living in a country begging of tolerance. But it seems that for some, it does not work both ways!!! Did my post really sound like a sermon???

  • No, not at all. I took at as a statement of how it is for you. Moreover you have made it clear that you care about other people's feelings and are not trying to run roughshod over anyone. I hope you can take all the different reactions in stride and not be discouraged about being here. Look at it this way - you certainly generated a lot of interesting discussion!

  • I am sorry. I was not trying to make a sermon just share my coping mechanism!

  • FYI I know there is a spiritual dimension, and I believe in the law of Karma- that we are all accountable for our deeds - yet I am agnostic as to the existence of God. Just sayin'.

  • I also do not believe in one God. If there is then they're clearly not very kind!!!

    I agree with you about karma. What we create from within ourselves is what we receive. If we wish peace and kindness and deliver that then we will find the same returned and in everything we see. Well almost everything! 😉, There are things we cannot change no matter how much love and kindness we send and sadly Parkinson's is one of them. But it's possible to get the best of life whilst living with Parkinson's. Not celebrating it or setting it as a cross to bear. But to see ways of having fun and peace and living life as it is. I can't walk much, but there are so many things I can see and do instead that I had no time for previously.

  • I believe we have a spirit that continues after the body is no longer working. But I am not a Christian. So I disagree that it is not possible to take your God, I am assuming here that you mean the Christian God Yahweh as there is also Allah, Buddha (although not a God he is used to channel prayer) and also many Gods such as Pan, oestra and Odin, to name a few.

    Yes absolutely agree that spiritual beliefs are important to all and in all circumstances we do not talk about them enough. That is why there is too much assumption that folk are talking about Christianity when religion or spirituality is mentioned. There is by the way a huge difference between religion and spirituality.

    I personally believe that we each have our own path and I do not share mine unless asked. But I do share that I believe we each have our own path and that as long as we do as we will but we do no harm, then we can't go far wrong.

  • I have NEVER felt so misunderstood!!! I am fully aware that this is a Parkinson's forum. It was not in any way my intention to hurt you or others and certainly not get us to go on a tangent about anyone's spirituality, which by the way I am fully aware of the difference between spirituality and religion! I NEVER meant to hurt anyone! Tolerance begins on both sides!

  • I am trying to attack the Parkinson's monster physically, emotionally and spiritually! What way others choose is none of my business - for the latter! Hank you for your kind words!

  • You've got it! This was my first post! I was not trying to convince anyone about anything! I'm so sorry! Tolerance goes two ways!!!

  • Look after yourself Kathleen, see if there is a support group in your area. Join, you need as much help as your poor husband does. Not easy being a carer. If you join a support group there will be carers who need to support each other :)

  • We have a group in Baton Rouge called Movers and Shakers. It's all about dispersing information, but does not have any "fun" activities! Please don't think that I think that PD is fun! I got chastised for using the word Joy! :( I know that info is absolutely needed but a little laughing can go a long way!! Thank you for responding!

  • I think you have taken that it of context. Nobody was suggesting that laughter was not acceptable not that joy was not acceptable. But your connection with joy and Parkinson's was not a good way to explain what you feel about your religion.

  • Sorry, Mable, I read and reread my initial post. My motive was pure. My belief has worked for Louis and me! It is what it is! I honor your belief or non-belief! I think we best put this baby to bed!!! This is about Parkinson's and victims, not about me!

  • Bless your heart. It is not a sprint, its a marathon. Oneday at a time. Take sometime for yourself. You have to get a break to keep on keeping on. Weve experienced many of the same things. He was misdiagnoised and treated for Alzheimers for several years. I urge you to keep searching until you find doctors the get it and listen. It took years to get on the right medicines onboard. Also find a confident, a group or friend and share. Dont hold it in and dont be hard on yourself. We do the best we can with what we know. Education is powerful, read and learn everything you can. And yes God does have a plan for each of us and does not make mistakes. In that we can rest. Bless you both.

  • Thank you for your kind words. We have five children who have convince me to get out on my own and with friends! I feel so guilty but I'm doing it!!!

  • Louis's Parkinson's was bringing us down socially. Our old dinner group members are bit younger than 78 and the men still hunt and fish and take trips and talk money, etc. When a large group of us went out, the men sat on one side and the women on the other. I chose for us to sit in the middle because I have never liked sitting away from him, especially now! Well they (who are all good people) drank and talked and Louis and I just sat there. I was timing food and Sinemet and we were the only ones who needed to eat and go home, take meds and go to bed early. So, long story short. I decided to host a Cajun Kitchen Party in our home! 20+ people showed up! Louis never had to leave his chair! We laughed, played games and ate the best chicken/sausage gumbo on this side of the Missippippi! I invited persons which we had helped during the recent South Louisiana flood and some other old friends! This "mixed" group, most of whom did not know each other, bonded! All of these people love and are very attentive to Louisand his needs. The women in the group playfully hover over him. The men will jump in to cut his meat if they see he needs help! We had so much JOY that I'm hosting another one on Feb. 11 and all of you are welcome to come. Now you and I know that Louis could not play the right-left gift game. He probably heard little of the lively conversation. But I know that this gathering was better for him then just another night of television! In French south Louisiana. We say, "Laissez les bonstemps rouler!" Let the good times roll! And we describe ourselves as having "Le joie de vie," The joy of life!

  • Kathleen, I'm with you on joy. It is a healing balm for the mind and the emotions. I've learned that I can produce it at will by focusing for a few minutes on things that I am grateful for or things that I appreciate. After a few minutes, it feels like my brain is actually producing some feel good chemical (and it probably is, maybe serotonin or endorphins). I can get into this state by focusing on things like a beautiful peace of music, a bird singing, a sun ray, the center of a flower, or someone that I deeply love. The beauty of God's handiwork can be awe-inspiring when you really look at it.

    Could you and your husband make a daily ritual together out of naming and giving thanks for 3 things that you each of you is grateful for? Gratitude is so powerful!

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