My name is Tania and I’m 31 years old. I have a number of complex medical conditions and have just entered the third trimester of pregnancy. We’re expecting a baby girl on 22nd March.
In order to be the best Mum I can be, I need power assist adding to my wheelchair – namely a SmartDrive. This is a device that attaches to the back of my current wheelchair and powers the chair without the need to push on the wheels, all at the tap of a wrist.
I have hypermobile Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome and two complex forms of migraine (basilar type and hemiplegic), along with a number of other medical conditions.
Hypermobile Ehlers-Danlos syndrome (hEDS) is a connective tissue disorder that affects the collagen (glue) that holds the body together. It’s a multi-system condition that affects every part of my body. I experience pain, fatigue, subluxations (partial dislocations) and a whole host of other difficulties because of my hEDS.
Postural orthostatic tachycardia syndrome (PoTS) is a neurological condition that affects the heart rate. My PoTS causes breathlessness, dizziness, tachycardia, palpitations, pre-syncope, fatigue and nausea.
Because of these two conditions, I can’t stand up safely and need to use a wheelchair.
Unfortunately, pushing my wheelchair causes me a lot of pain, risks subluxation and increases my heart rate significantly. As a result, I’m only able to push myself safely for short distances on flat surfaces.
My basilar type migraine (a rare form) means that I’m not medically allowed to drive. As a result, I can’t get out of the house independently. But, a SmartDrive would change this. I have had confirmation from wheelchair service that, although it’s not safe for me to drive, it is going to be safe for me to use a SmartDrive.
Even before my hEDS and PoTS got to the point where I couldn’t stand up safely or push my wheelchair outside, I was only able to walk a maximum of 10 meters. Trips out were limited to local locations, one day a week, because of the amount of pain self-propelling my wheelchair caused.
While I could put up with this when it was only affecting my quality of life, I don’t want my impaired mobility to impact on our daughter’s quality of life.
I want to be able to give my baby the best life possible. But, without a SmartDrive I won’t be able to do basic things that most new parents are able to. Unless I’m able to get a SmartDrive for my wheelchair, I’ll need someone else to help me do simple things like take baby for her injections. We also won’t be able to get to mother and baby groups or go out into the community. As a result, our baby’s social interactions will be very limited.
My husband and I have spent a lot of time considering the various powered options available, to give me the most independence so I can be the best possible Mum to our daughter.
We've tried all of the various power assist devices and a Max Mobility SmartDrive MX2+ is ideal for me.
Photo from max-mobility.com/smartdrive
A SmartDrive attaches to the back of my wheelchair and just requires a tap of the wrist to start! No pushing involved. You can see the SmartDrive in action here:
A SmartDrive will allow me to leave the house independently with our baby. It will allow me to wear her in a carrier, tap my wrist to start the SmartDrive and go – no extra pressure on my shoulders from trying to take baby’s weight and push my wheelchair at the same time.
A SmartDrive will fit in our family car, my parents’ car, my parents-in-laws’ car and any other vehicle I may need to travel in. As I’m not medically allowed to drive, it’s important that any equipment I have can be transported in all the main family members’ cars.
With a SmartDrive, I’ll be able to take our baby down to Essex to visit my family regularly, something I feel is really important for her. She deserves to be able to play with her cousins and grow up knowing them.
With a SmartDrive, we’ll be able to go out as a family and enjoy ourselves. My husband will be able to focus his attention on our little girl, rather than them both being limited because my husband is having to push my wheelchair. I don’t want our daughter’s memories of days out to be of Daddy pushing Mummy. Days out should be all about fun, exploring and learning as a family, with all of us being able to join in together.
With a SmartDrive, I’ll be able to take our daughter to the park, to the local shop if we run out of something, to play with other children in the area. When the time comes, I’ll also be able to take her to school myself.
The SmartDrive doesn’t require any adaptations being made to my wheelchair in order to use it. It’s lighter than other power assist options and the battery life is significantly longer, meaning I’ll easily be able to use it for an entire day without having to worry about how much battery I have left.
The SmartDrive is a device that I’ll be able to continue to use if my wheelchair needs to be changed or updated for any reason. It’s easy to remove and transfer to a different wheelchair.
A SmartDrive costs £4975, which is the amount I will be fundraising for. Unfortunately, power assist devices aren't available through the NHS.
I have been lucky enough to make a little money through my blog this year. This has been put to one side and will go towards paying GoFundMe’s fees, so that all money raised will go directly to paying for the SmartDrive.
Thank you so much for taking the time to read this and considering helping me to be the best Mum I can be. You aren’t just helping me; you’re allowing my daughter to have the best possible start to life, for which I’m eternally grateful.
I know that finances are tight for many people, but please don’t think that the only way to help is financially. Sharing on social media is such a powerful tool – you never know who will see and be able to donate.
You can find out more about my medical conditions, our pregnancy journey and my experience with wheelchair service on my blog – whentaniatalks.com .
I've written a Powered Mobility Options blog post, sharing the research I’ve done into finding the most suitable powered option for our family. This post details all the options we've explored, with their pros, cons, who they're most suitable for and why (in all cases other than power assist) they aren't suitable for me. I'm hoping this post will help others find the best powered mobility option for their situation.
I've also written a blog post comparing the different powered assist wheels available. So if you want to know why the SmartDrive is ideal for me, where other power assist options weren't quite right, this is the post for you! I hope it helps others in their power assist wheels research.
- Heather Simmons
- Sofie Solbakken
- Ginny Santer
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