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Calliope

New Caretaker/Drug Interactions

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I am beyond overwhelmed with my husband's recent Parkinson's diagnosis.  I'm desperately trying to research it.  My husband is just out of surgery for a non-related issue.  The surgeon promised he would not let the nurses give him any meds that interact with Rasagiline (Azilect).  Then the nurse wanted to give him Norco.  I looked it up and found eight seemingly credible medical websites that said it's either not recommended or outright dangerous to combine these two. 

The nurse told me it wasn't dangerous and got another nurse to come in and say that none of the medical websites were accurate.  You can't say that eight  medical websites saying the same thing aren't accurate.   Then they said it couldn't be dangerous because the pharmacist would never give something that would get them sued.  I'm in the legal field and I can tell you that hospitals get sued all the time for this type of thing.

I'm feeling very helpless.  I'm already not trusting doctors since his neurologist put him on Rasagiline even when it can make you fall asleep when you are driving, when driving is my husband's job.  It also can cause melanoma, and my husband spends hours exposed to the direct hot sun every day and he's now coming home burnt even with sun protection.  This is only my first month dealing with this illness and I already feel like I'm under water.  Does anyone have any advice on how to handle this type of thing?

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Calliope, please call the Helpline and ask for the Aware in Care Kit. It is free. It contains valuable information for physicians, anesthesiologists, and nursing staff about which meds can and cannot be used when a patient has PD. It has been a saving grace for me for both outpatient procedures and inpatient hospitalizations. You will have the weight of the entire Parkinson Foundation standing with you next time you have to deal with professionals who know nothing about PD.

Blessings as you learn how to be the best possible advocate for your husband.

Dianne

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@Calliope, your husband is lucky to have you as his advocate. You have demonstrated that you are not helpless, and that you have the good sense to double-check when in doubt. 

Dianne has given you great advice about the Aware in Care kit. 

You may have already researched these other sites, but in case you haven't, I'd recommend

The Davis Phinney Foundation (https://www.davisphinneyfoundation.org). You may especially want to order or download their free manual called Every Victory Counts (https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/).

The Michael J. Fox Foundation (https://www.michaeljfox.org).

Both of those sites, in addition to this one, have a wealth of information.

I also enjoy the social networking site for people with PD and their care partners called My Parkinson's Team (https://www.myparkinsonsteam.com).

Hope this helps. 

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You can also get books for free on the National Parkinson Foundation website store. You can get online copies or hard copies on lots of topics including medicine 

 

LAD

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Cereus and LAD thank you for this important information.  I am now understanding how important support is for this illness.  Your responses have been very helpful.  I've now been able to take a  breather from my panic and step back.  I'm realizing that I need to manage this entire process from now on in a way that works for us.  And that is going to be moving very slowly and deliberately when it comes to any decision particularly about medication.  I am not going to let doctors throw our lives into dysfunction without taking the all of the necessary context into account.  What a difference it would have made if we had taken the Aware in Care Kit's suggestion to include a neurologist in our surgical planning.  

  

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Watch out for a drug called Phenergan as well.  Hospitals like to dispense the stuff like candy to sedate patients and/or control nausea.  It is one of the worst drugs to give someone with PD.

I was given some via IV and it completley screwed me up for 48 hours.

 

 

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My mom was given 7 days of Bactrim back in July for a UTI.  It caused her to have trouble swallowing.  I didn't put 2 and 2 together at the time and took her to ER thinking she had bronchitis.  Because she has Parkinson's the ER doctor automatically assumed it was PD related and came very close to putting a PEG tube in my mom.   I threw a temper tantrum and told them there is no way that will be done that day.  Instead they made her stay overnight to be evaluated by a speech therapist.   Long story short my mom is no longer throwing up liquid each time I give her something to drink because her airway is normal again.  My mom has dementia so she cannot communicate how she feels.  I have learned from personal experience that most doctors are clueless to what this disease is about so we have to do our homework because no one else gives a damn.  Another important lesson is that NOT everything is related to Parkinson's.   When a doctor sees it on my mom's chart their mind shuts off and will blame it on the disease and leave it at that.  "sorry but it's a progressive disease so we can't do anything for her..." 

 

 

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2 hours ago, afroney said:

Watch out for a drug called Phenergan as well.  Hospitals like to dispense the stuff like candy to sedate patients and/or control nausea.  It is one of the worst drugs to give someone with PD.

I was given some via IV and it completley screwed me up for 48 hours.

 

 

afroney, it seems I will have to start a few notebooks, one with details about medications.  Thank you for the heads up!

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Miracleseeker, wow, I hadn't even thought of doctors thinking something is Parkinson's related when it isn't and all the problems that can cause.  I have been doubting my intuition to watch like a hawk for everything in the hospital, but I think it's the least we have to do.  

The doctor is coming back to my husband's room this afternoon.  I'm scared to get in a power struggle with him, but I'm just going to have to be brave enough to ask the questions about what kind of painkillers he goes home with tomorrow.  At least I now know it's more than okay to ask these questions.

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Hi Calliope,

The first few months post-dx can certainly be overwhelming. Hard as it is, sometimes the best approach is to focus on all things that haven't changed, rather than what seems to have changed overnight.

Like others have said, kudos for being your husband's advocate during a hospital stay when he may have found it difficult to advocate for himself.

But given your previous post, and how mild you described your husband's symptoms (and the fact that he's YOPD), I'd be a little cautious thinking of yourself as a 'new caregiver' all the time.

Has anything about his condition really changed , just because he has a dx now? If he didn't need a caregiver before dx (except for those times, such as hospitalization, when everyone does, PD or not), how has hearing the dx 'PD' suddenly changed that?

I apologize if this misunderstands the situation--I'll just say, from my own experience as a person with PD, independence and self reliance--as much as possible and for as long as possible--are a big part of how I've come to terms with the dx.

The way you describe your husband's symptoms sounds a lot like where I was four years ago. Four years later, I'm still working full time in a physical job, backpacking, even climbing the occasional mountain. My dx was certainly a big event in the relationship I have with my wife--not as big as having kids, maybe, but big. Still, when I've progressed to the point she becomes my caregiver, that will have a huge impact on the way we relate to each other. I've seen it in other couples.

I'm grateful she'll be my caregiver when I need her to be. But I want that day to be as far in the future as possible.

One guy's opinion, for what it's worth.

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Shopguy,

You make a very good point.  There are many levels of care giving.  Celebrities with spouses that need help considers themselves caregivers but do they really do the day to day work of care giving?   People that are vulnerable but are too proud to ask for help may need a caregiver to be a second pair of eyes or an extra pair of hands.   Everyone needs help sooner or later and the more support you can get the better the outcome.  I wish my mom was more independent from the start but it didn't turn out that way.  Take care.

 

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I suppose I am too upset at this point to pay much attention to labels.  I actually thought caretaker was the word I was supposed to use on the forum to distinguish me from someone with Parkinson's, but if it is more comfortable for everyone here I could from now on refer to myself as an advocate until the time comes for me to do actual hands-on care-taking.  

I am still reeling from the diagnosis and I have no idea what it will mean to be an actual caretaker.  The finer points of where my role begins and ends when it comes to my husband's illness regarding personal autonomy is not something I am ready to focus on right now, although understanding this balance I am sure will be very important in decades to come.  At this point I have no idea in what ways this diagnosis will affect our lives.  I would love to take ShopGuy's perspective and assume that we have at least ten years in this phase, which is what I initially thought, but from what I am reading in this forum very severe changes can happen quickly and are not predictable.

So far I have been thrown into a situation where my husband has had a diagnosis put on his medical record without any actual testing, inappropriate drugs have been given to him by a neurologist for a challenge test, the doctors and nurses at the hospital have tried to give him medications that according to reliable medical sites have dangerous interactions with that drug,  his work doctors have tried to delay approval for his tractor-trailer license based on that diagnosis which if I hadn't advocated to let him pass so he wouldn't miss his deadline for filing DMV papers would have already cost him his job. 

Also during that visit the work doctor explained to me that the California Department of Motor Vehicles treats a diagnosis of Parkinson's as they do epilepsy.  Once they see it on the records they take action to stop you from driving unless you can prove through special DMV tests that your condition doesn't interfere.  He may not have any symptoms that get in the way of daily living, but this diagnosis has already threatened his health and his livelihood.  So far "advocating" has been an absolute nightmare for me and it's only been a month.  This is definitely not a role I would ever choose for myself.    

 

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Calliope, my heart goes out to you. PD is a scary diagnosis for both the patient and the spouse, child, or parent. Please know that we are here for you as you and your husband adjust to this diagnosis.

Dianne  

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Calliope, I was shocked to read in your message about the DMV policy in California with respect to Parkinson's Disease. I think Davis Phinney or some other advocacy group ought to challenge that policy as a civil rights violation. 

But I know that doesn't help your situation. 

You have had a lot to deal with in a very short time. 

You may already have this information, but the APDA has two information and referral numbers for California, which you can find on this page: https://www.apdaparkinson.org/community/california/

Maybe you can get some help from them.

Here is the information I copied from that page:

Information and Referral Center at Stanford University

300 Pasteur Drive, Room H-3144
Stanford, CA 94305
650-724-6090 Robin Riddle, Coordinator
Helen Bronte-Stewart, MD, Medical Director
rriddle@stanford.edu


 

Information & Referral Center at University of California San Francisco

University of California San Francisco
Movement Disorder and Neuromodulation Center
1635 Divisadero Street, Suite 520
San Francisco, CA 94115
Samuel Yee, MSW, Coordinator
415-353-4628
Jill L. Ostrem, M.D. Medical Director
Ian Bledsoe, M.D. Medical Director

 

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4 hours ago, Calliope said:

So far I have been thrown into a situation where my husband has had a diagnosis put on his medical record without any actual testing, inappropriate drugs have been given to him by a neurologist for a challenge test ... his work doctors have tried to delay approval for his tractor-trailer license based on that diagnosis....

Hi Calliope,

If it were me, the first thing I'd want is a second opinion from an MDS. Your husband's neurologist can make a referral--if not, it may be time to look for a doctor who will. You might want ask the current neuro about stopping Azilect, given that it doesn't seem to be doing anything. That should help with worries about drug interaction and serious side effects (for what it's worth, sleep attacks are very rare with Azilect--that's more a concern with the agonists). No PD drug is proven to do anything but treat (some say 'mask') the symptoms--if the symptoms aren't troubling your husband, there's no good reason for him to be taking PD meds yet, if he doesn't want to.

Without a second opinion and with only mild symptoms, it's hard to see how the dx is anything but a 'maybe,' especially since the neuro who made it isn't a PD specialist. Has your husband had any testing to rule out other conditions? MRI to rule out other neuro issues? Test for Wilson's Disease? Those tests are usually standard with suspected PD, because there are other (rare) conditions that can look a bit like PD but are more serious. Being young and with tremor as first symptom, a DatScan to rule out essential tremor prob. makes sense.

It seems like you and your husband ought to be able to insist his work doctors and the DMV don't treat this as a confirmed dx until a PD expert confirms it. That at least may give you some breathing room.

Frankly, from what you've posted, your current neuro doesn't seem to know much about PD.

 

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ShopGuy, basically my husband was in for peripheral neuropathy and the neurologist did an MRI and discovered an anomaly in his brain that didn't seem to affect anything but he has an MRI regularly to keep an eye out.  The tremor started two years later and the doc said it was harmless.  Then a year after that my husband said his arm felt a tiny bit weaker and he told my husband he was challenge testing him on Azilect but couldn't order the med without a formal diagnosis.  The surgeons for non related problem asked the doc to take him off the Azilect for surgery because of interactions and he refused.

After the surgery drama we decided to put in an insurance request for a MDS.  That request just came in.  We will talk to her about getting him off the Azilect.  I will also mention getting the diagnosis off his record or at least having her advocate for him for DMV/Work.  

 

 

 

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Cereus, thanks so much for the information.  I have spent some time on line researching the DMV issue with Parkinson's and it's really alarming.  It sounds like it's very hard to keep a license in many states once they find out you have PD.  Now I am reading that many car insurance companies have fine print that allows them to refuse to cover accidents you if you have PD.  My husband has to have all his conditions reported to the work doctors each year before the DMV will renew his commercial driver's license, so there is no hiding it.  I will certainly use the information lines you gave me.  Thanks again for your help.

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Calliope, out of curiosity, did the neuro give any reason for refusing to take your husband off Azilect? Did he do any physical exam for PD, or just want to do an 'Azilect challenge'?

It's great you're going to see an MDS--the difference between them and general neurologists is often night and day.

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ShopGuy, he gave no reason for keeping him on the Azilect during surgery.  And he never told my husband anything about Parkinson's, just that it was nothing to worry about if he had it and he could just take medicine that would make the symptoms go away.  My husband said the only test he gave was to have him pinch his fingers together quickly.

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Calliope,

it does not sound like this neurologist knows what he's doing in regards to Parkinson's.  Azilect is a weak drug as far as symptoms go.  It's claim to fame is slowing the progression of the disease and even that can't be proven.  Exercise is the best tool we have in our toolbox with or without PD. An MRI can not diagnose Parkinson's. Tell your husband to stop taking  Azilect and wait to see what an MDS has to say.  I would insist on two things before your husband is officially diagnosed:

  1.) Sinemet challenge

  2.) DaTScan

Take a deep breath and relax.  I hope he doesn't have Parkinson's.

Dave

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DaveN, thanks for your thoughts.  I totally agree Azilect is a useless challenge drug.  This neurologist seems clueless or doesn' t care.  But I have read that you can't stop Azilect but have to taper off, so it might be risky to stop.  But we are going to see if the MDS will supervise getting off it.  

You bring up a very important point.  Are you saying that there is such thing as an official diagnosis?  I thought just a neurologist declaring it in my husband's records was all it took.  If he's not formally diagnosed I would be so relieved!  In my opinion if he is not in any way disabled or even inconvenienced by his symptoms there is no point in testing yet.  He's been doing all the exercise regimens recommended ever since he found out and no reason to stop that to stay neuro-protective.  Then we wouldn't need to worry about his losing his license.

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I just read on two different sites that a patient must have had two of the important signs of Parkinson's for a period of time before they should be tested and before they are able to receive a diagnosis!  If this is true then I feel certain our new MDS can nullify (?) the diagnosis by the first neurologist.  My husband only has slight tremor.  None of the other symptoms on the list.  If this is true then he can get off the medications which certainly aren't helping and have no more worries unless he has real problems down the line which he might want medication for.  Then we can do the DATscan.  He will still keep up the exercise religiously which will help whether or not he has PD.

 

  

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Calliope, I suggest you post that last question to Dr. Okun in the Ask the Doctor section of the Forum. It seems reasonable to me that the first diagnosis could be reversed. However, I'm not a doctor.

You could ask your question about slowly tapering off the Azilect to Mark, in the Ask the Pharmacist section. He is not only a pharmacist; he also has PD.

Dianne

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