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Parkinson’s and chemotherapy

Parkinson's Disease | Last Active: Jun 8 1:51pm | Replies (41)

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@jrwilli1

Our PT told us about the boxing as well but I looked and it is over an hour away and I just have the energy to do that right now. We went into the hosp clinic today since he has had nightly fevers last two nights 101.4 and 101.6 and is so confused and doesn’t help himself to get to restroom. In the day he is good not perfect but good. But at night I can’t hardly keep up. They will see him again tues and like I said the neurologist as well. Just need answers. Sorry just tired and frustrated.

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Replies to "Our PT told us about the boxing as well but I looked and it is over..."

You must be exhausted, and feeling trapped. I know you want to do the best you can, but give yourself some grace. I'm so sad you're feeling so much stress and pressure. UTI infection? So common. Do you have anyone to give you some respite time to give you time to sleep?

Do you have Physical Therapy staff coming in to help keep him mobile?

Your doctor can write prescriptions if your patient is over 65 and if he's making progress according to the PT staff member, you can continue it indefinitely.

Look into Coloplast. Should relive you of waking you up at night to use the restroom. Doctors should know to recommend this procedure. My friend says it was a game changer.

We need to help each other, and I feel your frustration. My husband is doing well but I'm with him mostly 24/7 and that's just hard! But it's what we do. I remember he told me when he was first diagnosed, "You didn't sign up for this." To which I responded, "in fact, I did." We've been married 54 years---magical times, wonderful family, but somedays, one more buzzer for help challenges me to take deep breaths and respond with kindness. Not sure I always do that well. We must remember, God is with us. He is grieved at our troubles. He walks with us. Wants us to depend on Him. There are many words in a the Bible to show us how man has always struggled, but He created us, He is always with us. We are never alone. He created us not to suffer, but to glorify His name.

Keep pushing the medical people to take you seriously. Not all GP's have any idea of what to do with Parkinson's patients. Find out how many Parkinson's patients your neurologist has treated. Are you near a research center?
Remember, you were created for a time such as this! God Bless!