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By mylove On 2017.06.16 13:14
This is sort of a poll, promoted by Janes last post and events that have cropped up for us.

How many of you are "holding back" on meds and accepting symptoms of undermeducation now because you are trying to stretch the effective time in the long run?

Conversely, how many of you are maximizing the good time now while your PWPs can enjoy it, knowing it may shorten effective time later?

There ARE no right answers, just personal preferences, but having read Janes comment about why they chose what they did makes me wonder who else has other factors to offer in weighing this decision?

By jcoff012 On 2017.06.18 10:51
Hi, Michelle!
The decision to not up his Sinemet was Carl's. He watched his Mom's progression, so he knows what is coming. But, to be honest, this was a decision he made early on because he rarely takes ANY meds, not even aspirins! The neuro is great...he told Carl that as long as he is able, the decisions about his health care were his and he would abide by them.

By mylove On 2017.06.18 11:14
After I posted this, I realized that I phrased it badly. The concept that Sinemet quits working is old thinking, because newer research indicates that it's not that the drug quits working, it's that the progression of the disease outpaces what we can do for it, no matter if we meter it out slowly or if we take the max dosage. So ultimately the better question might be "where's the line between quality of life and increased side effects".

Is Carl holding back because he's getting side effects from a bigger dosage?

On another note, It's nice to see another neuro who believes in patient experience. When I posed this question on another site, I got a ton of "we take according to prescription/doctors orders/as prescribed", and many were aghast at the concept that they could be working with their neuro on dosage, much less what our MDS recommends: adding another pill on particularly high-need days. It's like the scrip was written in stone, vs being a "living document" that can flex to some degree to accommodate life.

By lurkingforacure On 2017.06.18 11:42
Sadly, the script is written in stone if your loved one is in a facility-my understanding is that they cannot deviate from it.

I think Michelle is right also, my understanding is that the progressive neuronal loss is what causes the need for more sinemet, not that a tolerance builds up or it quits being as effective.Our neuro told us that as we progress, we get less and less natural dopamine because we are losing more and more neurons, so cannot make it like we normally would, thus we have to get that dopamine somewhere and that's sinemet. While I understand all that, I sure didn't like hearing that my husband is probably down to less than five percent of his dopamine neurons, that was really a bucket of cold water in the face.

By jcoff012 On 2017.06.18 12:31
Carl decided many years ago to not take meds unless he absolutely HAS to...his neuro understands this and really works with him. Each time he sees him, he does the litany of questions: nausea? Are you tolerating the doses you are on now? Do your tremors bother you and is it time to up the Sinemet?

Then, they talk about the pros and cons of adding meds, upping the Sinemet, etc...this time he was more concerned with postural issues...he noted Carl's slumping as he walked...meds can't help that.

I do believe that Carl's life experience with his mom's PD is a big reason for him not increasing the dosage, but a strong reason he keeps saying "no" the meds is that he simply refuses to let PD change him...he has always hated taking the simplest of meds, so to him, it's the same with the Sinemet. As long as he can, in his mind, the minimum dose is best and his neuro agrees. Dr. Christine said that Carl's strong desire to manage his health is a big reason for his positive attitude in his life and in his PD reality.

So, when he prescribes anything, he always tells Carl to experiment...take 1 or 1 1/2 tablets...whatever works best for you. If you want less, take less...if you need more, let me know first so we can talk and I can make sure your prescription is increased. 9So far, this hasn't happened!)

By pinki53 On 2017.06.18 12:44
I wish my DH could help with whether his meds are working well or not. He really doesn't seem to know. :(

By mylove On 2017.06.18 13:23
I'm not understanding what you mean by he watched his mom's progression. Ben took care of both his dad and uncle with PD, so he knows what's coming, but it's made him *more* interested in getting the most out of the good years, if anything. I'm glad to hear Carl is doing great, I just can't follow his logic. :)

By jcoff012 On 2017.06.18 14:15
Michelle, what I mean is that Carl's Mom was of the generation that didn't question a doctor and did everything and anything he/she prescribed. He watched her care being shifted to the doctors, not her or the family's life choices. NOT part if his lifestyle. She eventually lost control of her movement and voice, so by that time, the family simply did exactly as the doctors recommended.

To him, retaining control as long as he can is retaining control of his life. HE wants to keep active, HE wants to exercise, HE wants to control whether or not to take or reduce his meds, until he no longer can. I agree with him, and for almost ten years it seems to be working. He is slowing down, but we are both 69 (I will be at the end of July), but he pushes himself daily...right now he is outside prepping the back for the next pergola and for the pool shed he and another carpenter are building. If it weren't for his tremors and blank stare, and other small "ticks" you would just think he was an 'older gentleman' slowing down!

(PS-I quit the Facebook group because of the negativity there. As you said, most were "by the book" and refused to accept that Carl and I were so far into PD without major meds, etc. Could not accept that I still love him unconditionally and that, pardon me to the newbies), that we still enjoy a great deal of intimacy! Such is life, I guess!

By mylove On 2017.06.20 08:51
Well - update to note. Also along the subject of retaining control, Ben added another pill to his regimen and was actually able to make it all day without a midday nap, plus he played (albeit very slow) nine holes of golf! He was so tickled, and is glad he feels better. We will update the neuro when we see her next month, but it was what she was advising all along. He was a little uncomfortable about adding more meds, but since he's getting no side effects and the benefits are so good, we are definitely on Team Quality of Life!

Carl must be the exception, Jane. Ben can and does do all sorts of those things, too...but it's not by skipping the meds. The meds are what allow him to do it and keep going. I keep going back to what someone on here said a few years back about exercise - I'll have to paraphrase because it's been so long. For PD patients getting the advice to exercise and it will be a cure all - when they CAN find enough energy to exercise, it comes at a big cost, often requiring 2-3 days of significant pain and fatigue to recover from one days exercise session. That's my guy to a T, even though by all other standards he's doing great and you wouldn't know he's sick to look at him. I think your guy is just very lucky right now, and I hope he enjoys it as long as he can!

To each their own treatment! May you all find exactly the right mix that works for you.

By jcoff012 On 2017.06.20 13:21
Michelle, I didn't mean to imply that Carl isn't regular with his meds...he takes his Sinemet right on schedule...he just doesn't want it increased, yet...and he takes the Requip daily, too. He just isn't on a lot of meds and for that we ARE very lucky.

As you said, to each their own treatment! I am a firm believer in doing what my doctor recommends, but he fights it! What can I say?! ;)

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