10 days back in blighty: An update

As I write this, the rain is pouring down and the skies are grey, there are sunglasses and umbrella by my side in early June and that can only mean we're back in England! This post is a little later than I had planned to publish it I'm afraid but life became hectic as soon as we arrived home. As you might remember, the Premier Inn where we stayed in Croydon was not at all accessible for a disabled guest, I am happy to report that we did receive a refund on the room (they had suggested for both rooms originally but when it came down to it, the manager would only offer our room to be refunded and I didn't feel like pushing my luck).

It takes us about 4 hours to return to Devon from London along the Motorway, we tend to avoid the A303 where possible as its so twisty and the road isn't in the best condition, it seems to tire me out more. You may already know from our Facebook page that the ride wasn't easy: we broke down 2 hours from home. Happily cruising along the middle lane at 70mph, the car suddenly slowed and shifted to 'Park' gear without Davids intervention, thankfully he managed to safely pull into the hard shoulder and out of harms way before the van ground to a halt. We took a few minutes to restart the car and manually change gear on the over ride switch but all of our attempts were unsuccessful, so I called the special adaptions garage Adaptacar to talk me through some tests I could do before giving up. I just wanted to get home, we had our lives in the car (along with some very smelly French cheese) and knew that Motability would request that the van was towed to the garage directly instead of dropping our equipment home first. All attempts failed, the fuses were continually blowing and the problem was puzzling the experts, it didn't want to stay in the 'Drive' gear, but all others were fine! I should add here that this wasn't an adaption error because these are turned off when I'm not driving, but the gear select had to be moved to button form due to lack of space in the van, its quite a normal process in the dual system vehicles. Just as we were about to admit defeat, David managed to get the van into 'Drive' and with the specialists screaming 'go, go GO!' down the phone, we were on the road again and managed to get home with all of our belongings.

So the van was whisked off by Motability to Adaptacar for a repair, along with a few other minor problems that I thought could do with looking at whilst in the garage. Unfortunately one of these 'minor' things (an alarm to sound when my lock down is not secured yet) needed a new circuit board which had to come from Denmark, and I haven't had my van in about 10 days! But I'm happy to say that he's been returned and it gave me a few days to unpack and catch up on some rest.

We've also had some other news which is a little difficult to get our heads around, which is why I haven't been so active with the blog recently. This isn't so much to do with accessible travel but it is in relation to living with a disability so its worth discussing and making others aware. David and I have already begun the process of looking into our future and having a family, we have visited the genetics team to have David tested for the SMA gene to find out if he's a carrier so we can make informed decisions when we need to. This was all going well and we are waiting for a response without any issues. Until now.

I received a phone call from our geneticist a few days after we got home, and she explained to me that she had received my notes from the genetics team who diagnosed me with SMA 25yrs ago through a biopsy. However, the original test had come back void and it had never been retested. So she had to warn me that actually, theres a chance that I may not have SMA at all and that I'll need to be retested as soon as possible. The test may have been unclear or negative to the SMA gene, but no further testing had been done. I was so confused and frustrated, to think that my whole life and treatment was guided on an educated guess has made me really worried that I may have missed out on opportunities and further help. In any case, I'm being retested in a week and we'll know more in about 8 weeks from then. I can only hope it was an error and that I do infact have SMA.

On a brighter note, our hotel in Brussels supplied the most amazing lightweight ramp to get in and our of the reception. Its fibreglass so you can even lift it with one hand and it can also stack on the back of a wheelchair without disrupting the weight distribution, hooray! I'll be saving my pennies for one of these, it would have been incredible in Venice! Love Tori xx


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