I have an assessment for an electric wheelchair next week and my latest tube feed is vannila milkshake, coffee and coconut milk!
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx -
Well those things sound wonderful. 😁when i can think of something profound i will update this. -
Smashing Mathew xOriginally posted by matthew55 View PostALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.Comment
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Good luck with the wheelchair assessment Matthew - hope they know to give you the right chair. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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To Matthew
That’s great news about the wheelchair assessment..Hope you don’t have to wait to long for chair to arrive.My chair arrived 6 months after the assessment and I can move in it in a limited way downstairs as not a great deal of space.This weekend going to try going up in my through floor lift to see if there is enough turning space on the landing to get to the bathroom and my bedroom.It’s set on slow speed by assessment centre for now,( good job as I don’t need to be whizzing around the house really )
Apparently they will contact me to do an outdoors assessment soon.It’s heavy and enormous .I still need to sort removable threshold ramp.Took 2 people to get it into the house over threshold steps.
Best wishes
MaryComment
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Be prepared Matthew - Albert had his assessment yesterday and we had absolutely no idea he would have to do a 30 minute test out and about, he needed knowledge of highway code too! once you pass the test they "certify" you then you get a chair!
He came across 2 parked cars fully on the path and couldn't get by................the assessor had to locate the drivers and tell em to shift em!
neither one of them apologised - not a clueHusband Albert diagnosed PMA Feb 21Comment
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Cars were parked over dropped kerbs and half on the pavement when I did my outside wheelchair test. The woman that came was very helpful and calm. I had to get off the pavements backwards whenever an obstacle was in my way It wasn’t suggested to ask cars to move. But she told me that she could tell that I’d been a driving instructor by how traffic aware I was. My wheelchair can go up (forwards) and down (backwards) 4 inch heights. Some wheelchairs can only manage 1 or 2 inches.
The wheelchair lady offered me another session to build up my confidence on the getting on and off kerbs and I took her up on that Lynne xALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.Comment
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Well I passed my driving test first time and took three attempts at my Class two. I'm looking forward to this! 😁xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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Well done you. 😚when i can think of something profound i will update this.Comment
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Good morning Richard. It’s an Invacare Spectra XTR2, LynneLast edited by Lynne K; 12 June 2021, 11:42.ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.Comment
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Good luck with the test Mathew. I hate it that some people have no awareness or respect for those of us who use a wheelchair or scooter. I avoid going out on bin day.I’m going to do this even if it kills me!Comment
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Sounds great, Matthew xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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