The hope of all of us. That one day – as soon as possible – there will be a medicine that will help us, slow down the disease, even reverse it? Of course we all hope, even if time is working against us. Unfortunately, it takes years until a drug is tested and put on the market. A drug has to go through 3 or 4 phases of testing before it reaches the market. In this video it is explained well:
https://www.youtube.com/watch?v=8LNnI8CntdY
Unfortunately, I have never met a patient who has been informed by his doctor about the benefits of a trial where the doctor would have recommended the patient to participate in a particular trial. The fact is that we all have neurologists but most of them have a lot other work to do, so you have to do your own research, ask your questions, and those who don’t speak English are unfortunately at a disadvantage.
On this website you can see which studies there are and whether they are currently recruiting: https://clinicaltrials.gov
I usually know more about studies than my neurologist does. I keep my ears and eyes open. Below is a chart from Multiple System Atrophy Coalition showing what studies there are for MSA and what phase they are in. If someone needs help or has a question, please feel free to write to me. And no, I don’t know the majority of these terms and studies either, so I’m dependent on Google.
Of course, participating in a study does not guarantee success, there may even be unfavorable side effects in rare cases. Or if you are unlucky, you end up in the placebo group. This is a control group that gets the pills without the active ingredient in them – and not even the managing doctor knows about it, or has any influence on it. Whether one wants to participate in a study, can and may – that is often a decision of several participants, but primarily everyone must decide for himself/herself.
In our case: what is there to lose?
What comforts: a lot is happening at the moment, many studies are in the pipeline and the researchers know that help is bitterly needed. So let’s hope that if there is help, we will be still in good shape, so you do your exercises diligently.
And a big thank you to all the researchers who are working to make sure that our lives going to be long and as good as possible.