Parkinson’s and chemotherapy

Posted by Anonymous68607 @anonymous68607, Jun 20, 2023

I am a 68-year-old woman and was diagnosed with PD in 2021. I have right hand tremors and I’m not on any meds. Recently (April 2023) I was diagnosed with breast cancer. Based on test results, my oncologist is recommending chemotherapy. Could anyone with PD share their experience with chemotherapy?

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@jrwilli1

Well, I have him home and after a million dollar work up and no real answers to why he fell or why he is so confused. CT, MRI, and EEG of his head are all normal. His sodium was 128-130 so not real low. No urinary infection. So at this point they are just going to monitor him with clinic visits and he will continue taking his Parkinson’s meds and other meds as usual and if sodium levels aren’t able to maintain themselves while lowering dosage they feel he needs to see a urologist to check out the kidneys. My main concern is how the platelets are dropping and liver enzymes creeping up. They are going to do another who’s who test tues at our clinic appointment and then we see our neurologist Tues afternoon to reevaluate his night medications that might be lowering his B/P and causing him to perhaps fall at night. A lot of ifs.

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I agree with you, @jrwilli1, there are a lot of "ifs." I have found that as I age, and have multiple health issues and take multiple medications, it can be really hard to sort out what might be causing what.

I'm glad that you have a good medical team working on your husband's problem. It will obviously take some time to unravel these issues, but hopefully he will not have any more falls. Is he doing any physical therapy to deal with balance and falls?

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@hopeful33250

I agree with you, @jrwilli1, there are a lot of "ifs." I have found that as I age, and have multiple health issues and take multiple medications, it can be really hard to sort out what might be causing what.

I'm glad that you have a good medical team working on your husband's problem. It will obviously take some time to unravel these issues, but hopefully he will not have any more falls. Is he doing any physical therapy to deal with balance and falls?

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We need to get back to those. We had stopped because he was doing so well and PT thought we should save some appointments for probably just these issues. He was walking over a mile everyday and then riding his bike maybe 1/4 mile but it was had for him to get off and on bike but due to his stubbornness he fell while getting on the bike and that is where it all fell apart. Low sodium’s and with all those scans found an old pelvis fracture from those bike handles. So is back to square one on walking again. Very slowly. Not doing anything today but off and on sleeping.

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@jrwilli1

We need to get back to those. We had stopped because he was doing so well and PT thought we should save some appointments for probably just these issues. He was walking over a mile everyday and then riding his bike maybe 1/4 mile but it was had for him to get off and on bike but due to his stubbornness he fell while getting on the bike and that is where it all fell apart. Low sodium’s and with all those scans found an old pelvis fracture from those bike handles. So is back to square one on walking again. Very slowly. Not doing anything today but off and on sleeping.

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@jrwilli1

I really understand saving some PT time towards the end of the year for "falling episodes." I've done that as well. PT would probably be helpful right now to regain his confidence, strength and balance.

There are some great YouTube videos for PD patients. You might search YouTube for "chair exercises for PD patients." Tai Chi is especially good for balance. There are also some chair yoga exercises on YouTube that really help with coordination.

Whatever type of exercise he enjoys will be best. I hope you keep in touch and let me know how you are both doing.

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@hopeful33250

@jrwilli1

I really understand saving some PT time towards the end of the year for "falling episodes." I've done that as well. PT would probably be helpful right now to regain his confidence, strength and balance.

There are some great YouTube videos for PD patients. You might search YouTube for "chair exercises for PD patients." Tai Chi is especially good for balance. There are also some chair yoga exercises on YouTube that really help with coordination.

Whatever type of exercise he enjoys will be best. I hope you keep in touch and let me know how you are both doing.

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Thank you. I’ll try and look some up. Like I said just nice to be able to talk to someone who has been there.

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@jrwilli1

Thank you. I’ll try and look some up. Like I said just nice to be able to talk to someone who has been there.

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I do agree with you, @jrwilli1. Being able to share our experiences and journeys with health issues is what makes Connect so valuable to each of us.

Here is a link to some seated exercises provided by the Parkinson's Foundation.
https://www.youtube.com/results?search_query=seated+exercises+for+parkinson%27s+disease

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Be sure to check out boxing with a trained instructor for Parkinson's. Rock Steady is one national program. Individual lessons are my husband's favorite workout. Instructor very aware of fall possibilities. In this video he had been in ER day before for abdominal pain. He doesn't ever want to miss and thinks it's a great addition to PT and speech therapy. Excellent cognitive workout too, cross over boxing moves. He and instructor count out loud and help his speech. Check out Blazepod routines. Good luck!

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Sorry this didn't appear above. Check out the foot work!

Notice with the elliptical bag he has his eyes closed.

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@mamasmeeve

Sorry this didn't appear above. Check out the foot work!

Notice with the elliptical bag he has his eyes closed.

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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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@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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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!

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Thank you so much for your reply. Yes 24/7 is what I have as well and yes after 43 yrs of good times it is so hard to see those fade. My children live at least 3-4 hrs away and have very busy lives so not able to help much. Last night was a little better. I try to take it each day as they come but my patience sometimes wears thin. As I felt sorry for myself last night I saw a post of a young mother whom had lost her husband when she was 35 wks pregnant but then was able to remarry and finally conceive after 3 yrs with this new husband only to have the infant have a very rare probably fatal disease and I got mad at myself for being so selfish. In her words Mary had to watch her son on the cross in pain for all of us. So I’m taking him today on all the errands I would normally leave him at home and run because I can’t trust him at home and the weather is beautiful. So maybe a lunch at a park. Even though his shirt is inside out but he did it himself .

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