A Day of ups and quite literally downs!!

[Tabbycat]

Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. xx

Excellent link Ellie thank you for posting, I hadn't previously come across this.

It has been also been really useful in helping my husband see what is likely to be needed.

[LindaB]

Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. xx

Great link.....cheers👍🏻😘

[Karen62]

Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. xx

Oh thank you Ellie will have a look at that

[Ellie]

Karen62 The MNDA has info of the whole wheelchair situation which might be worthwhile reading (and watching) before your appointment - click here to read it. xx

[Karen62]

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.

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 assessment

[Hakuna]

Thank you Donna

[DeeH]

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.

[Hakuna]

How did you get that Karen? I can’t figure out who to contact.

[Karen62]

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.

[Jane]

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.

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.

[Olivia H]

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.

[Tony]

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.

[TinyLady]

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 x

[Karen62]

This makes me angry because you will need an indoor wheelchair eventually. I brought mine second hand. I had it serviced. Its a tdx sp2 and I only paid £300. It cost £4000 new.
X

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.

[Jane]

Thanks for advice re rollator Ellie. Will contact OT soon.