Happy New Year

I'm happy 2015 is over. It was a bad year.i struggled at work. I find my wife and I are distant. She's always on the cell phone. I don't think she's doing anything wrong but she should be spending more time with me. I'm insecure about our marriage, so I'd like her to reinforce her love for me. ( I should let her go so she can have a real life) I'm finding myself very sad at times, can't do the things id like because of Parkinson's. No energy and spend too much time on the couch. In the last week 4 nights I went to bed at 11 and woke up by 2, not being able to fall back to sleep. In the last 4 months I lost 20 lbs. I'm 190 lbs and stand 62"

Just a few of my thoughts

Happy New Year, and may 2016 bring you all happiness

13 Replies

  • Peace comes from inside it can not be given by some one else. Talk to your wife she may feel the same way.

    take care

  • Please pray pray pray give all your issues to the man up stairs he will guide you ...my theory of the web /cell phones are a form of the mark of the beast

  • Im so sorry you are feeling sad about 2015. Are you able to speak to your doctor regarding your lack of sleep? Everything seems worse when youre tired and needing rest. I have the support my husband and couldn't imagine my PD life without his support. Are you able to share your concerns with your wife?

    Wishing you all the best for 2016. May things be much better this year.



  • Firstly, I would like to wish you a Happy 2016. It is good that you have been able to recognise your problems but it seems that you need professional help in solving them. Your wife may also need help in coming to terms with this disease that robs us of so many things.

    I often search the internet for a lot of answers to my problems and have found many answers this way. This Community is an excellent resource. Have also found that exercise overcomes that depressed feeling.

    My advice is don't give up on your marriage - although it is hard at times keep fighting.

    Ask your doctor or nurse for help.

  • Hi Casper. My heart goes out to you and your wife. Pd. has ruined many marriages, but more often when the wife has Pd. than when the husband has Pd.

    What you both need to do is start becoming positive about your Pd. There is a lot we can all do to reverse the symptoms of Pd.

    When were you diagnosed? How committed are you to helping you and your wife to beat this thing?

    If you are really determined to do something about it, then start by committing yourself to walking for 10 minutes every second day for the rest of your life. Not just walking but walking as FAST AS YOU CAN. After every 2 weeks you must add 5 minutes onto your time until you are walking for 1 hour. Then you continue to walk for 1 hour every second day. You must keep a record of how far you walk each time and the time taken for each walk. After 5 months, when you will be walking for 1 hour each time you will realise that you are much fitter, healthier and stronger. You will sleep better and you will be better!

    That will not cost you a cent. Yes you will need some good walking shoes. You may just be thinking that I don't know how tired you are and how difficult it is to do what I am asking you to do.

    I have been there. In 1992 I had to give up my job because of Pd. I was 58 years old then. I had been going to the gym for 90 minutes every day during the 2 years following my diagnosis but my condition continued to get worse, so I stopped going to the gym and gave up!

    Then my late wife persuaded me to join a Walking program which she was doing and she had lost 14 Kilograms in weight and had come off all her blood pressure pills and anti-depressant pills. She managed to get me to do it, against my will, but after only 4 months my condition had improved so much that I put everything into the walking . 8 years later I was able to come of my Pd. medication and stop seeing my neurologist. I am NOT CURED OF PD. If I stop the walking my symptoms start to come back each time. I am now 81 years old and can still walk 7 kilometres in less than 1 hour. That is better than most people without Pd. can do.

    So, put your money where your mouth is and start doing something about your problem.

    Good luck!


  • John,

    Thank you for sharing your inspiring story. I was diagnosed at 28 and just turned 42. I feel awful my body hurts, i have no energy, can't sleep, and have Dystonia and a heart condition caused from side effects of the PD medication. I would love to be able to get off these meds, they are making me sicker. Did you struggle with pain or side effects when you started? How did you deal with the pain? Your story inspires me so i want to try and get better like you did. Just not.ure how to do it with these problems like my Sinus Tachycardia that makes my heart flutter and the severe Dystonic storms that I now have daily. I am determined that life can be better after reading your story. How bad was your PD when you started? How many years into your diagnosis were you?

    Thanks again for giving Hope.

    Love, DF

  • O dear, poor you. I am the wife of a Parkinson's/PSP sufferer and I also spend some time on the cell phone, mostly on this site as it is so helpful. I also use Facebook as it keeps me in touch with old friends that I/we can no longer meet. I love my husband dearly, despite the difficulties of illness. My greatest worry is if I become ill myself and can't manage any more. Tell your wife you love her, she too, will need reassurance that the man she married is still with her. Do also contact the GP about weight loss. Best wishes.x

  • So sorry to hear of your past year. First talk to your wife. Open communication, even if it is not what we need to hear , is important. I suggest both of you join a support group. Hopefully there is one for caregivers also so you can go to one that fills your individual needs. She may be frightened and not sure of the future and how to cope. This is normal but needs to be addressed. Does she go with you to your appointments? That is a great time for both of you to open up and ask questions and seek advice.

    Regarding the weight loss, are you eating regular balanced meals? Are you having trouble swallowing? Are you 6'2" or 62"? If 62" you are overweight and some weight loss will help your mobility. Remember to do at least stretching exercises. You want to preserve muscle mass and lose fat only.

    I facilitate a Caregiver Support Group. If she is willing, I would love to speak with her if a support group is not near you.

  • No one has been closer to their spouse than I but I think you might need a look at how caregivers, even the best, most caring, might feel. Then you might appreciate why the doctors always ask caretakers how THEY are doing. The stress is intense. We spend everyday, every hour with a person who may or may not contribute to a conversation. Silence. If they do speak, it often can't be heard. Wish I had a nickel for every time I have had to say. "What?". My husband CAN talk, has gone to the Loud program twice but as soon as he leaves, he is back to a whisper. PDers are limited in what they can do physically but worse, they often no longer laugh, pay attention or seem to care about anything other than themselves. They sleep at odd times, often causing the caretaker to be up to insure safety and then the caretaker also has sleep deprivation, making them cross and short tempered. They can't visit with their old friends- important to women. There's no socializing with others. They can't go browsing at TJ Maxx. They hardly have time to get to a haircut. They do EVERYTHING that used to take 2 people to do. They lift, change diapers, dress, cook, feed, clean, take care of the finances and the car. They do all the chores.

    For myself, we can afford help but it only helps enough to go out for errands...no lunch with the girls, no gym, no trip to the museum.

    And my husband is mobile. It's like being a prisoner in ones own home regardless of how much you love your sick spouse. If your wife is one used to getting out and about and had a variety of interests and activities, it will be harder for her.

    I suggest you get up off the couch and get yourself some physical therapy, start a tango class, begin a boxing program, go to a Big and Loud program, listen to music and move with it. I am very pro active in going to every appointment with my husband and have been the one to get him every service and treatment known. I get him to these activities but that is my personality. Your wife may not be the same but if you ask her to help you find and get to these activities, she would probably help. My greatest asset before PD was patience. PD has turned me into a shrew. Just the effort of dealing with compulsions and taking FOREVER to get anywhere is wearing beyond belief. Not that he is slow...not so much....just that he has to compulsively do 16 things before the main thing.

    Exercise is NOT optional for you.

  • My compliments to you for reaching out for advice and support. That is the bravest and most important step in regenerating your relationship and your own sense of well-being. There is not much I can add to the knowledge others have shared in response to your post, other than to say if one is available, join a support group. You get such helpful tools and form bonds with other people, which ends up breathing new air into your relationship and expanding your world. You mention that your work has become difficult; what kind of work do you do, Casper?

    Hang in there. Reaching out for help always brings positive changes.

  • This sounds familiar. Depression is often part of Parkinson's. Talk to your doctor. A change in PD medication dosage really helped my Parkinsonian husband with these symptoms. He is sleeping better, eating better with less swallowing issues, and we are both happier.

  • Hi Casper, Please get in touch with me at parkinsons.me. I've been through the exact same scenario and I'd love to help you today!! Hopefully we can speak later. Ewan

  • Sorry to hear 2015 was a bad year for you, i can relate. I am not married but my PD at times makes my 6 year relationship w/ my boyfriend difficult at times to say the least. Keep communication open with your wife, try some things to help your condition, and do things that also build up your hope and spirit. I know easier said than done. I too, had an awful year in 2015 but have decided to look to new resources for help in 2016 or I have let PD win. I hope that you can find some happiness and helpful resources in 2016.

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