Guide, direction, clinical trials, anything post stroke therapy

saran_c_19012013
saran_c_19012013on Thursday, September 3 2015
4 Comments

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?

4 Responses
Joy avatar
Joy

I had my stroke nearly 3 years ago - a corona radiata cva - lacuner stroke - can now walk using a walking stick aid but balance is a major hurdle. After  being told I have to accept that I may not get any movement in my arm/hand I have refused to accept this. I have done extensive rehab and now focus on power plate and hand/arm exercises. I have tried quantum neurology which did free up my frozen shoulder, frequency specific microcurrent which had no affect, saeboflex but did not have enough movement in my fingers, bionessH200 but distributor said it wasnt suitable for me. I tried botox injections but this removed tone in my bicep then fingers became very relaxed so I could not close or grip anything. Did all recommended exercises following botox and now 6 months later fingers back to how they were so have decided this was a waste of time and money for me. Mirror box and EMS stimulation has resulted in more wrist movement. Am now concentrating on physical movement - 100 to 200 repetitions of each on the strongarm which has resulted in more arm movement, shoulder and forearm exerciser which has resulted in my being able to raise and hold my hand/arm in the air. See My Blog on EnableMe. I also work my arm everyday doing clinical pilates.  It is a long slow process. If you hear of other new developments I would be keen to find out about them. Good luck!

saran_c_19012013 avatar
saran_c_19012013

Thank you Joy. A journey for each and every one of us and yes i will let you know of anything else

StrokeLine avatar
StrokeLine

Hi Saran,

 

Good on you for fighting for ongoing rehabilitation. Unfortunately, some of the upper limb devices like Saebo and Bioness are still not widely available to all stroke survivors in Australia. I'm glad you have been able to access these devices as I have had some success using both when working with stroke survivors previously in rehab. As you are probably aware, the aim is to keep going. The more repetition and rehabilitation/activities aimed at the "just right challenge" is more likely to rewire the brain over time. 

 

I would suggest you also check out the new Australian government website for clinical trials here as well as registering for the Australia and New Zealand Clinical Trials register. 

 

You may also be interested in joining our Fight Stroke campaign here to help us advocate for better care, services, support, research and rehab for stroke survivors. The more active stroke survivors uniting with us to demand better care and treatment for our stroke community the better.

 

There is also a carer who has started a conversation about botulinum toxin (botox) for his wife if you would like to share your experience with him here.

 

If you wish to talk to a health professional please call us on StrokeLine on 1800 787 653 Mon-Fri 9am-5pm.

 

Best wishes in your ongoing recovery, please keep us updated.

 

Regards,

Simone (Occupational Therapist for StrokeLine)

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