I was surprised to find that my last post sounded “darker” than I meant it. Well, that wasn’t my intention. Friends and acquaintances contacted me asking “if everything would be OK with me” – yes, it’s all good. It becomes just the own misery the normality. Everything becomes complicated and troublesome. And thus depressing. And you learn to live with it. That often sounds like despair, but that’s not always the case. I can also be happy about some things, things that I would not have noticed before.
I know, what it was like, to go into public for the first time with a stick – I thought I was sinking, and I was believed , everyone is staring at me, with pitiful looks, which certainly wasn’t the case. I have to say, that I am 50 years old, in my spirit actually less than that, so not yet ready for a stick in my mind. Recently I was still living a fulfilled life, on high shoes, of a woman who liked to be a woman, who liked to dress up, with long red nails, who occupied a manager position with diligence and endurance, I drove a good car, always in the fast lane. On the motorway and in life. So it is sometimes difficult to cope with the fact, that everything is exchanged with a stick.
All in all I realize, that everything is very often psychologically more difficult to tolerate, than physically. One realizes that this stand is forever, it should even get worse. I think the worst thing for us is, that the future is so unpredictable. Every patient is different and we don’t have a process. I don’t know what’s worse if you don’t know anything else from the small, or if it worse to lose in one second on the other everything that life has been so far about. Yes, there are moments when you are desperate, you find everything unfair and you ask for “why”. But – we don’t give up that easily, there is still hope and there are many moments worth living for. I am actually still glad that this terrible illness does not come in young years, so I also had a life, and memories so far.
A lot is happening in research, so there is something to hope for. A few years ago there was nothing at all, zero, nada…
- The Biohaven trial (formerly Astra Zeneca) with Verdiperstat, which is already running in the USA and It should start at any time in Europe. Phase 3 study.
> Read more - Alterity enters the market with PBT434 (formerly Prana Bio Therapeutics), a promising drug. Geoffrey Kempler, CEO and Chairman of Alterity Therapeutics Ltd. explains the company’s plans and talks about the drug candidate PBT434, which is designed for the treatment of MSA.
Video and written version of the interview. Phase 2 study in planning and in the starholes.
> Read more - MODAG is developing treatments with the active ingredient anle138b for Parkinson’s syndrome, including Multi System Atrophy. Study start in December 2019 (in healthy volunteers), Phase I.
> Read more - A New York-based Phase II trial to determine whether Sirolimus (a drug already approved for other purposes) has the potential to slow disease progression in MSA.
> Read more - The MSA Trust is opening a new clinical trial with a drug derived from the poison of a lizard – Exanatide – to investigate whether it might slow the progression rate of MSA. A study in the starting blocks.
> Read more
A balancing with these trials and a participation, or a registration for a trial is left to everyone. One can hope to gain time with these trials, the official appearance of these drugs, in best case, happens only after a while, which may be too late for us. Not to forget that a trial is a trial, even with its dangers, and not a drug.
It is difficult to keep the balance between hope and despair. If you want to remain realistic. So for me at least. That means you’re often desperate, and that happens easily at this time of the year.
In any case, I try to work with these ongoing and planned trials and try to keep the progress of the disease as slow as possible until then. So I pull myself together and do my exercises.
By the way, does balance exercise make you as well sick?
And a proof that it’s worth it to continue: on the weekend I visited a gig of the band VNV Nation in a Munich club with the help of friends. Yes, it wasn’t easy, I would have liked to have danced or screamed and ripped my hands in the air. And the way there and back home was also exciting. I bought a walker especially for this event so I can sit back. The looks don’t matter to me either. And it was brilliant and it was worth it, and it motivates for a long time.