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YOPD - Carer

Good Afternoon Community Members,
I am a young person, who is a carer for my partner who was diagnosed with PD at 25yrs, this was some years ago. I think it is important to note that I met him post-diagnosis, and I truly adore him. However, I sometimes get frustrated, when he refuses my attempts to help him find a support group or exercise routine to assist with his symptoms and regulation.

I am relatively new to PD, only really having experience through my partner (we have been together for 2 years) . I was looking for advice from people living with PD or other Carers, on how they wish their carers approached these issues, or if there is anything else I can be doing to support him.

Thank you!

  1. First, I am glad you are interested and willing to be there for your partner. Second, I think communication is key. You can say and do only so much to help. That is normal, as is frustration when your partner ignores good suggestions. Take care of yourself first. Then give care and encourage your partner. Perhaps there is a local support group or you might check for helpful webinars on the complexities of being a care partner by visiting various Parkinson's foundation foundation. I hope you find some answers for both of you. Kind regards, Lorraine, moderator

    1. Hi Emma,
      I totally understand how you feel. My fiance was diagnosed about 3-4 years ago and I am the one always driving the bus. He will do very little to better his strength and health. If I don't push it doesn't happen.

      1. Hi CommunityMember910,

        As a person who has had PD for 12 years, I will suggest that it is
        very common for the patient to feel helpless, angry, anxious and
        depressed about their diagnosis.
        You as his partner are NOT the person who can treat his lack of
        You can't do it FOR him, and there will be diminishing returns if you
        try to MAKE him as he is not a recalcitrant child, although he probably

        This is a situation that needs professional intervention.
        Hopefully he has a neurologist because neurologists are best equipped
        to look at the presentation of the entire patient.
        A neurologist can look at what you are seeing and determine whether
        medication changes are needed to deal with his apathy, which is what
        you are describing, which I personally battle on a daily basis, determine whether he is also depressed, and look at the pharmacopeia of
        Parkinsons treatments

        Things can get better.
        As far as looking at YOUR life, I encourage YOU to maintain your own
        relationships, health, work life, hobbies and interests.
        You cannot help him if you are not well and if you become overburdened, stressed out and depressed from carrying
        Good luck and best wishes 🙏 ❤️ as I know how difficult it is for me to
        break out of the apathy and lack of motivation that are cardinal symptoms
        of Parkinsons, resulting from the 80% diminished dopamine levels
        in our brains.
        FYI The therapeutic class of dopamine agonists is often beneficial for
        addressing these symptoms.

        -- A former 18 year neuroscience pharma rep + Parkinsons patient


        1. I can imagine your frustration when someone you love is not willing to help themselves. You cannot do it for them.Because I really dislike exercise my husband found alternatives that we can do together. It really helped get me motivated. That may or not help, but possibly there is something you can find to enjoy together. Just be sure to take care of yourself as added stress will be detrimental for both of you. I wish you all the best. Thea DeStephano Community Team Member

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