Originally posted by shelly21
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Me too Jane. They have said they will do an assessment, but OT said that they have become really strict on who gets help now. I can ‘walk’ around the house but only if I am holding on to furniture, walls and anybody close enough for me to grab.
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Karen62 - I had to say I would mainly use it indoors to get mine from NHS. But with MND diagnosis I was told they do fast track you.
Mine came just in time as I started falling at home and now wouldn't manage without it. I hope they sort yours soon xDiagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.
Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.
Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.Comment
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It definitely sounds like you need a chair now. Do you have a contact at the MNDA who can help argue your case. They often know who to speak to a might be able to help.Comment
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Jane a rollator may be helpful depending how you use your walk/balance. . I was given one quite early on due to my very poor walking, but my feet are the worst problem with degrees of foot drop in each foot, and back weakness bending etc. Due to this my upper leg/hip does all the work in walking....in my case, two walking sticks allows a better leg swing to walk, rather than a rollator which causes me to 'shuffle' more. Gauge how you walk and use your legs, keeping in mind your core stability. All the best.Comment
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Thanks Olivia. I have decided to use my walking poles if walking for more than 15 minutes and they make a huge difference, giving me more energy and confidence. Not sure how long I will be able to grip the poles though as my hands are my main problem, but for now I am very grateful that I am able to walk. I will ask my OT about a rollator when I next see her.Originally posted by Olivia H View Post
Diagnosed November 21, ALS limb onset, started in right hand June 2020Comment
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A small victory today! I have an appointment for a wheelchair assessment booked. Now I have to just wait and see what they say when they come on the 11th. I am really hoping that they will help me.
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How did you get that Karen? I can’t figure out who to contact.Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comesComment
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Hakuna
I can't remember who refered |Thomas
Either the OT or MND nurse.
The wheelchair services, implied that people with MND always get a power wheel chair.
Mention that your mobility and safety are deteriating (sorry for spelling, no predictive text). So time is of the essence.
Make sure you have level access, Thomas is trapped inside with 3 inches of PVC at bottom of door.
Waiting at least 6 months for a new doorway.Donna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.Comment
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Thank you DonnaBulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comesComment
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I was referred by the MNDA care co ordinator and my gp - I live in Cambridgeshire and it has taken a lot of convincing to get them to do the assessment. My sister who lives in Cheshire had far fewer problems get her assessmentOriginally posted by Karen62 View Post
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Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Great link.....cheers👍🏻😘Originally posted by Ellie View PostInitial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.Comment
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Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.Comment
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