For those who care for someone with Parkinson's disease
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| Hi-Semi new here, HD diagnosed last October. His cognitive decline and personality changes(for the worse) are continuing. Now he might have Prostate cancer too. He is scheduled for a biopsy the day before Thanksgiving to confirm. I am barely coping with the stranger I now live with. After 35 years this "new" PD husband is mean. Now possibly a cancer patient too. Do all of you have pwp's that are otherwise in "good' health? The PD CG duties are a full time 24/7 walk on eggs "job". Do you deal with other medical needs not related to the PD? I work 2 jobs,bills piling up for out of pocket stuff. Looking for other perspectives, help,info,advice? |
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Meow: I am a Prostate Cancer "survivor" - prostate removed successfully 20 years ago. My wife had PD with otherwise excellent health for 15 years. However, the cognitive issues developed over the last 3 years into dementia, and she basically seemed to decide to die 2 months ago. Prostate cancer is often so slow in progressing that "wait and watch" is the best course, especially when there are issues with treatment. This may be the case with your husband. No-one else can decide for you, but take as much time as you need to weigh the pros and cons of treating the cancer or not. All our Best wishes. |
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Meow, my Dad had prostate cancer at 80, but they did nothing because of other health issues (his heart, mainly). The doctor said, “Quite simply, it is slow- moving, so at your age I would prefer to manage your other issues.” He was right...Dad passed from a heart attack without any cancer treatments. That said, I agree that you need to further investigate and then take your time deciding what course of action you should take. Health issues are extremely personal decisions. So far, my husband has been rather healthy, but is having issues with his eye pressure after cataract surgery. He has been dealing with this for over two years and is getting discouraged, but he keeps going to the specialists. I am sorry you are facing what must seem like yet another trial...it seems life is like that. All I can say is do your best, try to find a space for yourself...but, mostly...good luck. |
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| aleccymru-Thanks for your reply although I am sorry for the news about your wife. I am in the medical field but did not realize how mentally destructive Parkinson's is. I wrote my post mainly because I was not sure how a cancer diagnosis and or treatment would effect a PD patient. I imagine the brain processes drugs and chemicals differently? The Urologist is only versed in his specialty and cannot answer my questions regarding the PD interaction. I spent the morning fighting with my HD's insurance company. He had an MRI of prostate today but insurance would not authorize it. They said he needs a biopsy first. The Urologist said he needs the MRI first so he can plan what areas to focus on during next weeks biopsy. I work in the health insurance authorization field but find myself stuck as the ping pong ball again. Thanks for the reply. |
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You are absolutely right that doctors outside their specialty ignore the PD, mostly because the have little to no idea about PD. In addition to her neurologist, mom goes to her family doctor, urologist, pain clinic doctor, sleep doctor (actually we stopped going to that one), gynecologist, and eye doctor. Her neurologist knows about PD, but I've found that I knew a few things he didn't. As a team, I feel very comfortable with him. ... Her last neurologist seemed to be confused much of the time. He once even told me that anxiety and pain were not symptoms of PD, when I knew I had read in many, many, many places that they absolutely were. He reversed himself on the anxiety almost immediately at our next appointment (I assume he did research...which didn't really comfort me as he should have already known that...and he just tossed it out there as if he hadn't said the complete opposite at our last appointment), but the pain he wouldn't really acknowledge (probably trying to avoid a request for pain meds). He also made a mistake on one of her prescriptions, writing it for a mg it doesn't come in. And he also claimed that PD doesn't worsen very quickly, as her symptoms had gotten worse at that time. But my research showed that medication changes (not just the PD meds), anxiety, infection, and injury can all cause worsening of PD symptoms. She had all of those except injury at the time, which was enough info for me to explain what was going on at that time. My research also said that once the underlying problems were resolved, most people's PD symptoms improved over time--which hers did eventually. (Her family doctor has done research over the years on PD, and I have been impressed that he knows quite a lot about it now--probably not as much as I do, though.) ... In any case, I've learned the hard way that *I* have to be the one to research the PD and drug interactions, side effects, etc., because most of the time the doctors will not want to step on another doctor's specialty, and most of the time they have no idea about PD, med interactions, etc, anyway (or the time to research this niche of knowledge--even the neurologists don't have time to do the depth of research we can do for our family members on specific issues, drugs, etc). We did have a pharmacy tech student go through all her meds at the pain clinic once, but again, I seemed to know more than he did (for instance, he said taking her Cymbalta 120mg once a day was fine because that's the standard recommended way to take it, when I found she did much better taking 60mg every 12 hours--and her neuro agreed). ... As I've said on here before, when she was having specific problems, I would keep the drugs.com interaction checker open all the time, with all her meds listed, and read both the professional tabs and the public ones. I just continually read them, keeping an eye out for anything that would ring a bell, then search out online forums for other input. It's a never ending battle because so much is unknown about PD--and what is known can be very difficult to disseminate. |
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| Scottish actor/comedian Billy Connelly apparently got a diagnosis of PD and Prostate cancer on the same day! That was in 2013 and he just says cancer is no longer a problem. |
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| Aleyycmru..Thanks for the additional post, hearing both of those diagnoses on the same day IS worse than months apart. But they both must be dealt with separately. I am encouraged that the Prostate issue is curable/treatable. It is just a double whammy for us. The Urologist is laser focused on the Prostate issue and does not know about drug interactions and or how a Parkinson's patient processes chemo(if needed). I am in the medical field so I do a lot of research myself. My HD's biopsy is next Wednesday. IF the biopsy is malignant I will look to the PD Dr for help. I did not know the brain of the PD person breaks down drugs/medications differently. Before his official dx I gave my HD cold medicine. He almost had delusions, was falling over etc. The PD Dr said I need to check with him if I ever want to give over the counter meds. Who knew? I joined this forum looking for help from people living with and caring for a PWP. I guess not too many people use this forum as there are not current/daily posts as I hoped. But the old posts did provide a lot of valuable info for me. Thank you for the replies and thanks to all who posted. |
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Hello Meow, Welcome to the board. Sorry to hear of the multiple difficulties. I don't post frequently as I don't really have a lot of questions. I do chime in when I have information that might be helpful. There is also a Caregiver's group on Facebook. That space is very active. I check in on both. In case you want to look for it: "Caregivers' of Parkinson's Disease Support Group". I hope the physician's are able to give you good news on the cancer issues. ~Lynn |