Originally Posted by lurkingforacure
Ok, so if I dissect this, you cannot get this in Canada unless you
1. have ADVANCED PD (this will probably mean that you are really bad off)-to me, this seems like a very good way to significantly limit this option only to those who they expect will not need it very long
2. your PD responds to ldopa
3. you have to be able to show that you have tried all the available combinations of PD meds and that they were not sufficient to obtain "satisfactory control" (aka we-are-not-giving-this-to-just-any-PWP)...in other words, if someone decides that you get "satisfactory control" with drugs, you will not meet the criteria to get this treatment
4. you have motor fluctuations that are not only severe (again, who gets to decide this, what may be severe to the patient may not be considered such by the person making the decision (and I doubt that person will be the patient's doctor, that decision-maker maybe won't ever have even seen the patient, but I'm cynical)...so they have to be "severe" as well as "disabling", again, a subjective definition. What is disabling to a patient might not be considered disabling to a healthy administrator sitting behind a desk reading application after application....again,
I can see those purported justifications now:
PD not advanced enough
motor fluctuations not severe or disabling enough
drugs are working well enough to control satisfactorily said fluctuations
I feel your skepticism, but let's look at a couple of things.
What is ADVANCED PD? We all have advanced PD. I would say by the time we show motor signs we are all "advanced." How is this measured? Normally by that Hahn& Yoer number 1-5 but I think in this case they will look at meds as a determining factor.
The trouble with meds. The amount of medication we take puts us on the razor's edge of being functional/normal and a Sinemet eating dyskinetic freak side show. There have been no studies that prove that the more medication we take the more advance we are. This is a myth. Personally, I have had varying doses of meds and functioned asymptomatically first on 12 mg of Requip XL then down to 8 mg- I am still getting same coverage at the lesser amount 3 years later- the 12 or 8 mg of Requip did not alter my Sinemet one iota. How in the world can we use amount of med as a measure of disease progression or severity?
I think advanced does not force you to try every possible drug cocktail out there first. What works is taking high daily doses of levodopa. When you do that the motor fluctuations start as does dyskinesia. These are signs of dopamine excess not disease progression per se. If you do not believe it check out the statement from Abbott UK:
The reduced fluctuations in the plasma concentration of levodopa reduce fluctuations in the treatment response. The levodopa dose needed varies considerably in advanced Parkinson's disease and it is important that the dose is individually adjusted based on the clinical response. Development of tolerance over time has not been observed with Duodopa. On the contrary, many patients, after a period of satisfactory treatment with Duodopa, may find that a lower dose of levodopa will provide a satisfactory clinical response.
Further support on that last statement:
It is less disease progression and more tolerance levels that result in need for increased ldopa doses and dopamine excess. Our bodies still react to same dose but our brain has been told otherwise. Shhh!! no one wants us to know that our bodies stop producing what is being provided for it and that in overstimulating our dopa receptors we essentially shut them down- paradoxically we then start requiring more and more of the substance to get same relief (or kick). This is the same as a drug addiction.
My neuro: "DBS resets your clock with Sinemet"
There we have it. Both are invasive treatments to manage drug dependence. I prefer the one that does not invade my brain, thank you.
In all actuality, I think that who gets the pump will be decided by our doctors making a good candidate profile for us, much like for DBS. In essence, your symptoms play a part too but you need to push your candidacy if you prefer the pump. In other words, if you have anything remotely contraindicating DBS, do not downplay it. Things like anxiety, depression, freezing, speech, and balance issues can cast shadows on your DBS eligibility (our they should). They will screen you with a mini mental exam so forgetting how to draw the face of a clock can be helpful for your case. Seriously, you have to work with your doctor on this.
Let's all hope this is the case.