Andy Straw
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Andy Straw
MemberJuly 31, 2020 at 6:43 pm in reply to: Requesting tips for purchasing a mobility accessible vehicleWhen we were researching to purchase our wheelchair minivan three years ago, two of the top manufacturers were BraunAbility https://www.braunability.com/us/en/mobility-products/wheelchair-accessible-vehicles.html and VMI https://www.vantagemobility.com/mobility-products/wheelchair-vans/
Two dealer networks who have dealers in many locations, and a large inventory draw from, within the US include United Access https://www.unitedaccess.com/inventory/used-vehicles/ and Mobility Works https://www.mobilityworks.com/wheelchair-vans-for-sale/type/Used/In 2017 we purchased a used 2014 Toyota Sienna with VMI Northstar conversion (side entry, in floor ramp) from our local United Access dealer. We have been very happy with it. We found that in the older minivans (before about 2016) the Toyota and Honda vans were more spacious, including higher entry height, and more space front to back, both of which were very helpful for us. But I also know many people have been happy with Dodge Caravan conversions, which tend to be less expensive.
You definitely want to test any vehicle yourself using your wheelchair to make sure you fit easily.
We also bought Q’Straint tie-downs: https://www.amazon.com/QStraint-QRT-STANDARD-Track-PN/dp/B005BI7VP8/ which we like very much.
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Andy Straw
MemberJuly 28, 2020 at 7:32 pm in reply to: Information or results on Radicava (Edaravone)I took Radicava from November 2017 through November 2018. I had a port “installed” – that was an out-patient procedure. We had a nurse do port access (2x per 10-day course), but we did daily infusions and port de-access ourselves. No side effects. Didn’t notice any positive effects, so stopped after one year. I participate in the Precision Medicine Program at the ALS Therapy Development Institute: https://www.als.net/precision-medicine/ and have since November 2016. I have data about my condition and progression monthly since then up until now. I don’t see any difference between my progression for the year before I was on Radicava, the year I was on Radicava, or the more than a year since I stopped Radicava.
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Andy Straw
MemberMarch 10, 2020 at 3:09 pm in reply to: Pratical Tips for Caregivers and Newly Diagnosed ALSHere’s a website I put together: https://sites.google.com/view/alsinfo with links to various resources I found useful. You might start with the “General Info” and “Coping” pages.
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Andy Straw
MemberMarch 3, 2020 at 4:44 pm in reply to: Any information on availability of Ibudilast?I don’t have answers to the specific questions. However, I see that a phase 2/3 clinical trial is planned, though not yet recruiting: https://clinicaltrials.gov/ct2/show/NCT04057898 even though it was announced almost a year ago: https://alsnewstoday.com/2019/04/17/fda-approves-pivotal-phase-2b-3-trial-ibudilast-als-patients/
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I can still speak reasonably well, but my hands and arms are very weak. I use Amazon Alexa technology quite a bit – this webpage describes my smart home set up: https://sites.google.com/view/alsinfo/equipment-and-tech/my-smart-home
I also use speech to text software extensively: https://sites.google.com/view/alsinfo/equipment-and-tech/mouse-and-keyboard-alternatives?authuser=0#h.p_gbSR_HS7Ji3f
I was able to get grants from my local ALS Association to pay for some of this.