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Caring for my DH with Parkinson's. Had an appointment with neurologist today. Back in March she prescribed one month of PT and a new med, a patch called Neupro which is indicated for restless leg syndrome, and is a Levidopa agonist, thus prolonging its effect. He improved markedly with both changes. I/we both told her that the new meds and continued exercise routine at home were working well, and even she noticed an improvement in his gait and posture...HOWEVER, she still wanted to prescribe more meds for him! Has anyone ever used a nasal spray form of Levidopa? What has been your experience, good, bad or indifferent? I think she must be getting kickbacks from pharma reps. Every time we go, she offers a new med or an increase in what he's taking, even though he seems to be stable on the current dosage. Changing doctors is so stressful to him (AND ME!) I am reluctant to do it. At least she no longer insists that he go on the new or increased meds, leaves it to us to decide. Just venting because these meds are not cheap! In the donut hole after only five months. Anybody else have this problem?

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From what I understand, the nasal spray is quite new and is used primarily like a rescue inhaler might be used for asthma. Some people with Parkinson's experience wearing off of their meds, with very debilitating symptoms, before it's time for the next dose. So, the nasal spray can provide much more immediate relief. I don't think it's intended for constant use on a daily basis. If your husband is stable on what he's taking now, I wonder why doctor thinks he could benefit from the nasal spray? It's good that husband improved with the new meds. Exercise is very important for people with so I hope he's able to get as much as possible.
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Here in the UK we do have, heaven knows, lots and lots of problems but at least this isn't one of them. We do not have to worry that our doctors are prescribing medications for their own individual financial gain (though there are other, not strictly clinical incentives which we innocent trusting patients aren't always aware of).

But still. Speaking for myself, I cannot imagine being offered a prescription by a doctor and not asking what it's for - what it's supposed to achieve, what the thinking is, how it will work, in what way we hope it will benefit me, are there any risks or drawbacks I need to know about.

So if you ask your neurologist those questions, she either will or won't come up with reasoning that makes sense to you. And if it does, great, go ahead; and if it doesn't, say no thank you.

I also would never be ashamed to state frankly that cost IS an issue, and if she, the neurologist, can come up with a drug regimen that will deliver the same benefits for less money you would be a happier bunny. I think we're all prone to feel that when it comes to our loved ones no price is too high and money must be no object, and it leaves us open to exploitation. This shiny strawberry flavoured tablet does exactly the same job as the grey chalky one and costs twice the price, but surely we only want the best for our best beloveds? There's nothing wrong with being a canny consumer.
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That's how she described it, as an adjunct when the meds wear off. However, his symptoms seem to be well under control under the current dosage, and he doesn't complain or even notice when they wear off. He has really kinda been in denial that there is anything wrong. After 6 years, I think it is finally starting to sink in. Neurologist suggesting new meds every 3 months just makes me nervous, makes me second guess my gut feeling. He does not like taking meds and adding more that are really not necessary makes it worse for me trying to explain their benefits when I'm really not sure that they are beneficial. Saw so much improvement with the PT and an exercise program that he can continue at home, and the Neupro patch has definitely helped. Just don't want to overmedicate him. This disease is so baffling seems no two people have the same symptoms or responses to the meds. Feel so lost without my life partner, married 48 years in May. Thank you all for caring and listening, this is so hard
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newbiewife Jun 2019
If he's stable, I see no need for changing meds, though the Dr. may see something during his examination that you and he don't notice. My husband is like yours--he says he doesn't really feel the effects of the carbidopa/levodopa, and can't tell if he's in an "on" state or "off." I can see some difference in his gait if he's close to the time when he needs another dose, but it's subtle and I don't know if someone not familiar with him would notice it. He's been quite stable for a while, and does get a lot of exercise. Overmedicating can definitely be a problem. Maybe ask the neurologist if she sees something in his exam or physical signs that causes her to keep changing his meds so frequently. In our experience, they go by both the exam and also what the patient and caregiver report has been going on. Our neurologist always asks about falls, sleep, dreaming, involuntary movement, halucinations, general activity level, etc.
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newbiewife -
Thanks for your response. This disease is so baffling and frustrating. Neurologist always asks if he feels any wearing off and he just shrugs. Like you, I notice very slight differences, usually in speech and comprehension. She always asks about "freezing" which I see regularly, and involuntary movement, which is rare. I think she is queing off of the freezing to up or change meds, as everything else is the same or even better since the PT and getting more exercise (she even noticed the improvement in his gait). I think I will continue to advocate for not adding meds unless really necessary. Already declined the hallucination medicine - one of the side effects is hallucinations!! Hugs to you and blessings. We have a long hard road ahead. Prayers that we are strong enough to endure
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newbiewife Jun 2019
I've found a lot of helpful information in a Parkinson's group on a discussion site called Smart Patients. https://www.smartpatients.com/conversations You do have to sign up, and then you can read or particpate in groups focused on particular disorders. I can't remember how I came upon it, but the prople on there are very helpful and knowledgeable. Best of luck to you and your DH. We've been married almost as long as you, so I know how you feel.
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I had the same with my mams doctor. Everyone I brought her she was been given Steroids, antibiotics, nerve pills, etc. She ended up with kidney failure from all the tablet's she was on. The doctor in the hospital said even her body could not cope with all those pills and my mam is 88. So if your dad seems good on what he is taken now, tell his doctor you want to leave out adding more medication. Don't be afraid of these doctors. After all it's your dad's life not theirs
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Levadopa will only be effective for so long. So most doctors are careful not to increase dosage unless necessary.
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I know it's rough to change MD's, but think of yourself as the employer of them...because you ARE. Ask for a copy of the records, if need be, and interview a couple more when you feel up to the challenge. Also, you might want to check with the company that makes the particular drugs you need and see if they have any patient assistance programs. Have you tried Good Rx in the meantime? I've found that to be helpful even for the few pills taken around here..
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My husband was diagnosed with Parkinson's in 2002 - probably from Agent Orange. He is now in stage 4. I can't tell you (yes I could, but I won't) how many different drugs have been tried over the years. Some seemed to help and others made him much worse. (Suggest keeping a medicine list of start and stop dates and how the drug affected the person with Parkinson's.) It's trial and error. In my opinion that is why it is called the practice of medicine. The thing that has helped my 75 year old husband the most - is exercise. Best to you both. It's a challenging journey for all.
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My husband is diagnosed with PD and is taking Stelevo as well as stelevo ER. He also is on an experimental drug called Gocorvi for his PD. More and more he has increases and changes in his medication for various reasons to help with the treatment process. He fortunately has found for his wild dreams with the medications that L-theanine and melatonin help. Not perfectly but, relief 90% of the time. More restful sleep allows him to function better.
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Doctor's are so hurried now that changing or prescribing new medications is all they can do in 10 minutes with you. There are several things you can do before you decide to change doctors... or even go to the same one next time. What are your goals? What are you wanting in outcomes? and what is reasonably possible? Can a functional medicine physician give you some guidance? Are their other alternatives? Medicine should look at the whole patient - family, social, mental, financial and physical. Which medications are on the insurance formulary? Get with a pharmacist and look at interactions, side effects and costs and then take this list back to the physician or a new physician and have a conversation. Just prepare your goals, questions ahead of time. Hope this helps.
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vghope Jun 2019
When you pay a Dr such an enormous fee - - - he should take longer than 10 minutes with you if he is truly trying to help you improve,
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How about finding a good functional medicine doc or maybe a naturopath and get to the root of the problems and stop with the bandaid pharmaceuticals. And don’t think for a minute they are not getting kick backs. They are making a mint off folks like you, which is so saddening. Medicine today is not about the patient any more, it’s nothing but profit driven quackery.
I know this is an unpopular opinion, but seriously a diet of clean organic real food, not the crap you stick in the microwave or comes prepackaged and pure clean purified water will go a long way in clearing up his symptoms. Pharmaceuticals are Never the answer to ones ills, they actually make things worse in the long run.
Your body was designed to heal itself with proper nutrition not drugs.
Another great way to regain health is stop eating sugar, flour and wheat products.
Stay away from canola oils and the like, use organic butter, olive or avocado oils.
As Hippocrates once said long ago and is still true today...”Let thy food be thy medicine and thy medicine be thy food”. Words to live by.
Most seniors today are deficient in magnesium, which if supplemented would really do wonders for the restless legs and many other ills.
In other words good nutrition is the answer!
There is so much great information out there regarding natural healing, you just need to look for it and stop believing doctors are gods.
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