Patients

Julia

Julia was diagnosed with PD three years ago and is an unusual and an outstanding patient. She does not take any medication at all, but does lots of therapeutical exercises and is feeling very well at the moment. However, Julia highlighted that “I would not like to think that I was a typical spokesperson to the people with PD, and I do think that there is quite apatite between the tiny minority of people who did not take any medication and the vast majority who do.” We respect Julia’s concerns about this.

Julia introduced the practical side of PD treatment saying that a PD patient does not go straight on to levodopa, but goes through a series of other drugs before the levodopa therapy. “This is done in order to prevent dependency and tremor, since people don’t know whether the tremor is the tremor of Parkinson’s or whether it is a tremor resulting from the actions of the drugs.” This opinion helps the team to specifically target the age group of the majority of PD patients.

Julia’s attitude towards medication is that “once people are on medication then it becomes a major preoccupation because they are having to take drugs for this, drugs for that, drugs to offset the effects of whatever,” – this supports our theory that DopaDoser will improve the quality of life of PD patients

When interviewing Julia, we got patient’s point of view that supported and highlighted ideas of the academics. The team needs to research the market before the clinical trials as mentioned by Doug Kossar and Julia present her side of view on this saying that “So good consultants particularly in the UK, I think less so in the US where they tend to be a bit more drug-happy, that is the reputation anyway, I think it varies a lot from consultant to consultant, but actually they will put back the prescription of levodopa.”

When speaking about dosage of levodopa to be released, the team could clearly see the concern on the regulatory system: “The other school of thought is that it isn’t that the dopamine producing cells die, it’s that they seize to, they become dormant because for reasons not understood the body doesn’t draw down the dopamine. So it’s not actually absence of dopamine in the system, it’s the inability of the brain to process the dopamine that’s there. So that the effects of L-DOPA and the drug treatment is really very clued because it just zaps this enormous quantity of dopamine into the system. Which is what produced the parkinsonism, because the body can’t process it. So it’s like you know unlike insulin there is no system for calibrating what the levels of dopamine are so you can’t just get to that subtle little trigger point which the properly functioning body does for itself.” The solution to this is a muli-dimentional system based on quorum sensing or a suggestion by Dr Silverdale of a dopamine receptor.

Professor Angela Tod’s idea on patients welcoming the treatment by GMO also was reflected in Julia’s answer: “…And I have a lot of respect for him, so although I have an emotional reaction to the idea of genetically modified anything, I can also stand aside from that and see that all advances in science involve the engagement of the clever scientists with real problem solving issues. I mean penicillin is a modification of a bacteria, I mean whatever you are doing you are modifying all sorts of things. So I don’t have an intrinsic objection to genetic modification with the right checks and balances in place and a proper code of ethics in place. That sounds completely wonderful. And I mean I don’t know very much about chemistry but from what I do know, artificially manufactured chemicals are never as sympathetic as more naturally occurring chemicals. So I feel quite happy about that idea. If it improves the overall functioning of things. I mean, there are some obvious difficulties with that if you have an upset stomach or people’s digestive systems work in different ways but imagining that all of those things could be taken into account that’s just a minor detail then really. The gut makes perfect sense”

The team was happy to get first-hand knowledge from a patient about more rare dosage being beneficial because PD patients concern about medication less time. Julia’s comment on this was that “… as I get further along, weaker, and les able to do things, which I am, it does take more and more resolve to do what I am doing. That is sort of a trade-off: if you have only got so much energy you do not really want to spend it in a gym… it does not really make sense…because you do not want you to turn your life into a therapeutic exercise.” Moreover, Julia said that “Most people I [physiotheraist] give exercises to and they do not do that.”

Indirect information of tremor and placebo received form Julia moved the team to the following ideas: the therapeutic strain can be sweet, because “The good side of the tremors is it is terribly slimming”, have fragrance, colour, flavor and packaging that induce positive emotions “my body was just tremoring, you know, it just has this capacity to engage with the emotional content of thing… Having said that, it [doing therapeutic exercises] is not that easy, because PD does have huge depressive component and it is hard work to keep the psychological upper hand… it is not like having a stroke… it is a downhill path really. It does not matter how much you put into it, you are not going into reverse,” and placebo effect in PD can be influential “it has a high level of placebo effect benefit, which is really weird I think. So even though cognitively I can know that, if I am talking about the Parkinson’s I tremor more than if I am thinking about something else… it is a very odd condition, because it is highly suggestible” and “There is very intimate correlation that is not understood between the physical manifestation of PD and the psychological components. Particularly about PD,” - so even if the strain becomes outcompeted by other gut microflora, it is possible that placebo effect will start bringing its benefits.

Julia welcomed the idea of DopaDoser saying that “The idea of actually having dopamine gently fizzing away in the gut to feed the brain seems to me rather splendid.”

Walter

Talking to experts about Parkinson’s disease, doing our own research in that field and concentrating on our L-Dopa regulatory system does not tell you about the burdens of Parkinson’s disease as much as visiting a person that is actually affected by it. Walter was tested positive for Parkinson’s disease five years ago. For four years he rejects the oral L-Dopa therapy because of suffering from massive gastro intestinal side effects of the therapy. Talking to him it seamed that so far he is better off without L-Dopa. “Of course, “ he said, “you can see I’m shaking. But I can cope with it especially when I’m at home. I sometimes do not shake at all. I can control it with sports, nutrition and meditation a few times a day.” As he started with the oral L-Dopa therapy five years ago, the adaption to the medication went very fast so that L-Dopa concentration had to be increased quite fast. Considering the side effects of the therapy he decided to try it without L-Dopa. Still, he said he is not ruling out to try therapy methods from general medicine again. In the mean time he is open for every kind of new therapeutic approach against Parkinson’s disease as well.

Talking about our project, Walter mentioned that although, he was not a friend of genetic engineering he would not mind having genetically engineered gut bacteria integrated in his jejunum if they would do decent work and are approved by the health system.

The interviews with Julia and Walter gave the team the patient-side of PD story. We were very impressed by how strong they are and wish them good luck and even more courage to tackle PD.