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A MyParkinsonsTeam Member asked a question 💭
Wausau, WI
October 11
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Answer Summary

Members discussed the importance of getting vitamin B6 checked while taking carbidopa/levodopa, with one member sharing that their B6 level... Read more

Members discussed the importance of getting vitamin B6 checked while taking carbidopa/levodopa, with one member sharing that their B6 level came back critically low and was linked to a recent first-time seizure. Several members described frustrating experiences with medical providers, including dismissive responses to medication concerns and a troubling remark from a palliative nurse, with some filing formal complaints to advocate for better care. A recurring theme was the emotional weight of caregiving, the importance of self-advocacy, and leaning on faith and community for support during overwhelming moments.

A MyParkinsonsTeam Member

You can move yourself whether your husband might not want to. Educate yourself find a hobby u like. Live your life too. As to something low or high dose it’s all relative. It was prescribed for him not u . He needs to accept responsibility for taking meds and cooperation w you. My fun Parkinson’s life flipped upside down with my wife’s cancer diagnosis and then spreading now I’m a caregiver. If a dr prescribed Im rather insistent it’s taken on time properly with proper hydration and diet. I move exercise a lot she will be soon too. Can’t walk well at all take 50 step walks over and over hit over 2000 steps most day. Exercise diet more important then meds. He is prescribed a high dose of exercise

5 days ago
A MyParkinsonsTeam Member

Blood work once a month b and d problems take shots and supplements have seizure diagnosed and looked at quickly.

6 days ago
A MyParkinsonsTeam Member

I understand, @A MyParkinsonsTeam Member, I can't go into details here and now, but our Primary drd something really stupid, that could have cost @A MyParkinsonsTeam Member's life. He's my caregiver now, but I was his caregiver for 15 to 20 years. I hate the fact that I can't be on top of his Healthcare anymore, but I'm not quite down for the count yet. When I realized what she had done, I gave her a good tongue lashing over the phone. She never did admit to wrong doing, but now, I wonder if she did the same thing to someone else because she's now on administrative leave and no one knows if she's coming back.

October 15
A MyParkinsonsTeam Member

My husband’s palliative nurse actually said to me there’s no benefit. With his problems he’ll probably havd a strike or heartache. Likely a stroke! I cannot believe this!! Should I fire the palliative? I don’t understand how they consider themselves Nurse’s with saying something so horrible to a spouse. I should have reported it right away but other things came up with him It’s ALWAYS something at that place!

October 11 (edited)
A MyParkinsonsTeam Member

Good for you! It’s not an easy thing to do but sometimes it’s necessary. Our society has made drs gods. It’s about time people realize they’re not all good. I have some horror stories too. And it’s a shame when you can’t trust the medical field. And honestly, I don’t

October 15

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