Guide, direction, clinical trials, anything post stroke therapy
I’m 2 and a half years post stroke after suffering a right CVA. I’m now turning 41 next month and there was no cause found for my stroke. My left side was affected and I’m now able to walk without aid but my left arm is weak and I’ve nothing in my hand. I am currently part of the clinical trial for botox called InTENSE Clinical Trial.
What I am looking at, and towards is a greater understanding and support for post stroke therapy. I’ve fought my way since being in the Royal Adelaide to the Calvary Rehabilitation and including Repatriation Hospital, sports neurophysiotherapy and Neurophysiotherapy as well as acupuncture and doing my own hydrotherapy at my local pool and I refuse to stop until I am at a point where I feel my body is recovered as much as possible. I have also started to be involved with the University of SA in both speaking at workshops for Occupational Therapy and Physiotherapy and the Proximity clinical trial being run by Susan Hillier. I have found therapy my own way and have purchased any equipment I think will help my road to recovery including the Bioness H200 and the SaeboFlex. What I do know is that it has taken a lot of my own persistence as well as my own money and have been told that there are not as many proactive stroke victims willing to keep fighting or trying different types of therapy. I hope not to offend anyone out there but the only way I have been able to have continuing therapy is my finding them myself. I was sent out of rehabilitation hospitals with contacts of other therapists but that's not enough. I know there are neuroplasticians and other specialist doctors out there testing things such as musical, low level laser (light level) therapy but is there anything like this in Australia and more importantly for me, in Adelaide? I know there is no perfect therapy direction for all stroke victims but one of the queries I have is how can I find grants, trials etc for post stroke therapy. This is not said lightly because I know that where Grants are applied for, those trials such as Cancer cure trials and trials which can be performed on mice etc can be seen as far more of a priority due to the ‘unknown’ goal for stroke victims.
I realise why there is a massive voice out there to support and be aware of the symptoms of the onset of stroke but I wonder if there is that much of a voice for those POST stroke. However, I, along with other younger stroke victims know and have website and forums including Enable Me and groups on FB but actual therapy types or directions I can’t find much of.
I’m contacting my previous therapists and not really sure what I actually want if I were to pinpoint what I want with therapy. I do wonder though, where and what I can do.
Can anyone out there help me?