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Topic Why do we do it??? Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2011.01.17 08:47
This is not in regards to caregiving for PD, but caregiving for oursevles really.

Why do we just assume because a doctor says take this, or take that, that we just do it?

I think it is because they are supposed to be the educated ones and we look at them as they know everything about everything so we expect when they tell us something, they are right and nothing can go wrong.

It was "funny" that oshroshr posted about the triavil, as just this weekend we had a long discussion with a neighbor about drugs and taking them.

My neighbors came down to the lake this weekend, to visit with us and found that he was now also on requip for his RLS. He's only on 1mg, lowest dosage but he wasn't even aware of the list of 20+ side effects this drug can have......so we got into a discussion about taking drugs just because the doc says so.

I'm not condoning drugs or telling you to stop taking any drugs for any of the health issues we have, I just think we should take more time and research a drug when the doc gives it to us.
As many here have found out, certain drugs can cause PD-like symptoms, certain drugs make PD symptoms worse and certain drugs just don't work with PD.

I think after learning all this we should apply it to EVERY drug we are issued, for whatever reason.
I think everyone should do this not just PD patients and their caregivers.
Even though pharmacists may have a list of drugs that interact wrongly with others, the thing is.... it's not a COMPLETE list. It's just drugs that interact together, not drugs that interact wrongly with a disease. What i mean is that two drug compounds collide with each other and are not good. They don't have a list of drugs that "collide" with a disease........in other words if you are taking a and z together, the ingredients of a and z may cause an explosion in our bodies. However, a,c and m, cause no explosion, BUT, combined together with a disease may cause more side effects and worsening of a disease than we want our body to go through.

My neighbor has RLS, diabetes and high blood pressure. He's in a family biz and has lots of stress from daddy as he is the patriarch of the biz and is really tough and hard. He's only 45, and is on 7 pills a day for these issues. He says lately he is so hungry he could eat cardboard if he wanted too. I asked him if he checked if any of the side effects caused this and he said no. He just took what the doctor gave him and surely there were no issues. I then explained about mixing drugs and their side effects and how closely you really need to watch and question the doc about what he is giving you.....
he is going to do some research on them and see what is up....
I sometimes think WE the public need to educate ourselves more about what we are given to possibly help avoid issues that somewhere down the line cause more damage than we are willing to accept.

I know that PD drugs and anti-psychotics are drugs we really can't live without, but i think we can research and really decide what is best for us and not take a drug just because the doc say so.......

By Emma On 2011.01.17 10:03
KK, Medications really are a damned if you do and damned if you don't proposition. And then to make matters worse everyone reacts differently to them. It's true that they can cause many side effects and dangerous, sometimes even fatal reactions. Yet on the other hand people live longer and healthier lives than they did before we had all of these medications. I don't know if I've mentioned this before but my stepdad was a pharmacist and one of my grandpa's was a doctor. I loved and respected both of them but my experience, first hand, was that pharmacists have A LOT more knowledge about medications than doctors do. They don't just have a list of drugs that interact with each other, they are highly trained in biology, chemistry and medical issues. They have this knowledge in their heads, they are scientists and I think that they often do know how medications collide with a disease. That was my experience with my stepdad anyway. He was always much more helpful to us than any doctor.

We have been lucky too in that we have doctors (my personal physician, my husbands personal physician and our neuro) who never just tell us to take a drug, they always explain it to us, always tell us what to look for and always tell us to call them if we notice anything at all that changes once we start with the med. We have both from time to time refused a medication and they have worked with us on that as well. I think that all three of these doctors are exceptional and we're blessed to have them. That said, I ALWAYS research drugs before we start taking them. If I find something that the doctor didn't tell us about I send them a copy of the article. Again, all three are receptive to that. My personal physician doesn't hesitate to suggest natural remedies either. And then, get this, a while back I noticed that there was a heart shaped sticker on the front of my chart and I asked her about it, thinking maybe I had a heart problem. She said no, that they put those stickers on the charts of caregivers! She said that she treats several caregivers and has come to realize that we have needs specific to caregiving so we get longer appointments, more time and more attention. How's that for a good doctor???

Anyway, I guess I'm not quite as suspicious of the medical profession as many others are, especially in that I have a soft spot for phamacists, but I agree with you that we all need to educate ourselves and be proactive in our own care as well as our loved ones care. Thank you for that reminder. It's another job that we have to do but it's an important one.

As far as doctors go, we need to keep looking until we find one who is a good fit and a big part of that is mutual respect. Years ago I had a doctor with a God complex who got upset with me because I questioned him about something. He said to me with great authority "I am a DOCTOR and you're not" I replied "You are a MECHANIC who works on bodies instead of cars and I pay you so I am the boss and you're not". Needless to say I never went back to him.

Thanks for the reminder and being our advocate/crusader!

By Lacy On 2011.01.17 11:59
Along those lines.....I used to go along with whatever the neuro prescribed for my guy until my PWP's primary doctor said his kidney something was elevated and asked if he'd taken any new meds. Told him no but that his Mirapex had been steadily increased over the last few months. Told his neuro who said that shouldn't make a difference but he cut the dosage back from 12 pills a day to 9 pills a day, then down to 6.....each time, my PWP improved until now...on my own, (and please don't chastise me for this), I took him down to 3 pills a day and OMG!!! I can't believe the change in him. He's doing more for himself now than he has in months! He gets up in the night to go to the bathroom and gets up more frequently throughout the day. His mental state is sharper and he seems to be "in the loop" more now than he has been in a long time.

He doesn't have another neuro appt until the 25th of this month and I intend to talk further about the meds with him. I have no qualms about telling him what I've done as I am the POA of my husband's health and it's my decision to do as I see fit. If I don't agree with something a doctor prescribes after reading and researching the drug, I'll contact the doctor and talk about it. I don't take anything for granted these days. I talk with the pharmacist constantly - especially when something new is prescribed.

It's not easy being in control of something so critically important, but it's something we need to do. Don't be afraid to question the doctor. They're not perfect and they don't know our PWPs like we do! We are the ones who will watch for side effects and we are the ones who will know immediately if there is any change in them.

I've taken the contro of his meds way more seriously than is probably necessary but again, I just can't take any chances with my precious guy. I want him around for as long as is possible and if my taking charge of his meds will make that happen, so be it.

So again, don't be afraid to challenge the doctor. I think most of them like to know there's someone in the house who is monitoring their patient and is informed.

Now then...on a lighter note....we bought a motor home a year ago and last year camping wasn't so much fun. Hubby seemed listless, not interested in anything, had difficulty getting around (although in the motor home was easier than at home), and had no appetite. THIS YEAR looks much brighter. He's already asking when we're going again and wants to know if he can drive (not an option and he knows it). He's asked me about different meals he'd like for me to make and if we're going to certain places and who is going along. He's definitely "tuned in" and I pray this continues for a long time!!

He still has bouts of dementia....last night he was looking for the stairway to go up to bed. We live in a 1-story house now and I had to remind him we don't live in the 2-story anymore. He had a hard time with that. But these are things that happen very seldom anymore. Whether it's due to the med change, I don't know, but we're happy right now with how things are going!!!

By karolinakitty On 2011.01.18 08:28
Emma..... I want your doctors, how great... :)

Lacy, In doing my research, i found that mirapex and requip in dosages higher than 15mg/day for long periods of time can cause renal failure and chronic renal disease.

My guy was having issues with his legs constantly being swollen, even after the hot weather went away his legs were still swelled like balloons. Not only does the requip/mirapex cause the leg swelling put they also, according to a well known naphrologist, have caused some serious kidney issues. He did a study amongst his patients, particular those with PD. However those with RLS who had been on those drugs for long periods, had the same issues....Now my guy is on 12mgXL a day, so i decided to research foods that would help/hurt and found a good article on it and have the good/bad foods listed on my fridge.
We ladies will be devastated to know that chocolate is OUT... once a week a small bit is ok, but no more than that....it actually devastated my guy... he loves chocolate but since I started watching the bad foods and avoiding them his leg swelling has not been an issue...
and i know what you mean about getting better? for lack of other words... With all the proactive things we have been doing we have been going on our little trips and having a ball again...Does your guy still go on the computer? Playing memory games and any kind of word games can help with his dementia. My guy actually tested better than he ever has this last test at the docs......

By Lacy On 2011.01.19 19:36
Emma.....thank you for your response regarding the extended use of Mirapex. I just the last few days have been concerned about his feet swelling and began researching renal failure, thanks to your post. Had I not read your post, I don't know that I'd have thought of renal failure.
I am now quite concerned about his kidneys and he will be going in for a urinalysis and renal panel tomorrow morning and seeing his regular doctor on Friday at which time he should have the results of the test. I am so afraid there will be bad news as his PCP expressed some concern about his kidneys a couple of months ago and I didn't follow through with pursuing it as my hubby was going through some bad times and I kind of forgot about it. DARN! I can't believe I did that....how careless of me.
So now.....I'm anxiously awaiting the appointment Friday and will post the findings. I'm very glad now that I voluntarily cut back on the Mirapex and that he continued to do well without it.

By lurkingforacure On 2011.01.19 22:11
Lacy, do you mind my asking how much Mirapex your guy was taking and how much he is taking now?

I think the max dose is 4.5mg, you must have really tiny pills if you were taking 12 a day? We managed to cut back to 2mg, but the pain is so bad he's crept it back up to 3mg. We have tried to actually quit it twice, once trying to switch over the Requip, which did nothing for us, and could not, could not get off the Mirapex. I guess it really does help my guy with stiffness and pain much more than we thought....or he has become addicted to it which is worse. I haven't been able to find a substitute so I'm very curious whenever anyone says they've reduced mirapex or been able to wean off of it completely.

BTW, when we lowered the dose, we too had less sleepiness and much less brain fog.

By Lacy On 2011.01.20 14:59
His pills are .15 and he was taking 12 a day for a total of 1.8 altogether so I guess in actuality, that was a pretty small dose....but it sure was a lot of pills to make sure he got every day.

I still can't get over how much more alert he is and he doesn't seem to suffer much with stiffness except a little first thing in the morning. It's hard for him to sit up and he needs my help. His walking seems to be a bit slower most of the time but then there are times when he does okay.

What happened when you tried to get him off the Mirapex altogether? Did you do it with doctor's orders or just on your own? I hesitate to post that I did this on my own....but I didn't do it initially. When he got down to taking 2 pills 3x a day, I dropped him down to 1 pill 3x a day, and sometimes he doesn't get the noon pill because we forget it.

By lurkingforacure On 2011.01.20 22:20
It was a disaster, both times. First time, we tried on our own, it was great for 2 days, then the pain reaaaaly set in and he just could not stand it. He had to go back on it.

The second time, our neuro was switching us from mirapex to requip, another disaster. I posted about that experience here. Requip for us was like taking nothing at all, but I know it helps others. We had to go back to mirapex, unfortunately. I have read of only a very few people who were able to get off mirapex, it is incredibly hard to get off, so them saying it's not addictive is ridiculous. One gal told me she was suicidal for months trying to get off it, and I've read similar accounts from others. It's wicked. Stay on the lowest dose you can for as long as you can.

By susger8 On 2011.01.21 12:54
Lacy, my dad was on 12 Requip per day (3 pills 4x a day). From my research I was sure it wasn't helping him any more and was probably responsible for some problems, such as hallucinations and sudden sleep attacks. But his neurologist was very resistant to cutting it down. He reluctantly agreed to go to 10 pills per day. I ended up changing to a movement disorder specialist, who agreed immediately that Dad should be on Sinemet only, no other PD meds. We did it very gradually -- eliminating one pill per day (not per dose) for a week, then going down one more the next week. He really didn't have any rebound problems since it was such a slow process.

By Lacy On 2011.01.21 17:08
That's exactly how we cut down on my hubby's Mirapex, one pill a day until we're down to 2, sometimes 3 a day. He's doing extremely well these days and it's good to know that if he shows signs of trouble, he can go back on the Mirapex but for right now, I'm pleased that he doesn't need it.


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