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magic
16th June 2013, 21:41
Hi Folks,
I pushed Peter for a short while last week an have pretty bad back pain as a result. He does have a mobility scooter but need a suitable wheelchair as well. I would like one that allows me to push with electric support and, at other time,Peter to operate himself. I need this to be for outside at the moment but it may be needed to get around the home eventually. Adaptations are nearing completion and expenditure has been pretty big. Can anyone advise on how much the new chair is likely to cost?

Magic

Terry
16th June 2013, 22:14
Hi Magic;
I am surprised that you do not have one already from your wheelchair service. Get in-touch with your OT and ask Mnda connect as they were assisting getting one quickly. Even then this route may take several months.
I bought a second hand one from ebay and you can also get an attachment to a manual one that provides the drive. I don't know how good Petes driving is because there are a lot more driver only models than one's with duel controls. Cost for a good new one is about 3500. The wheelchair service sometimes give out a voucher towards you buying one.
So OT, wheelchair service, Mnda and good luck, Love Terry

roy
16th June 2013, 22:53
Hi Magic,

I live in the Oxford area where NHS and MNDA work in partnership,together with the OT I was allocated 2 loan chairs a manual and a dual
Control electric.I realise its a post code lottery but I have to say apart from the difficulty in getting prescription for the joke drug the
Support and palative care I have received so far has been first class.I truly hope you can get a chair quickly.

Best wishes.

Roy.

magic
17th June 2013, 06:19
Thanks, spoke to OT on Friday and will make the other calls today.

magic

Barry52
17th June 2013, 09:33
Hi Magic,

As Roy says it is a postcode lottery but you are fortunate in that Leeds like Oxford and London has a wheelchair centre which was funded by MNDA via a grant from government. I learned this recently at the regional MNDA meeting held in Harrogate. I suggest you get in touch with MNDA central office and request assistance. Good luck and I hope your back recovers quickly.

Best wishes
Barry52

arthompson1975
19th June 2013, 16:08
Hi Magic,

Good luck. My father had MND (passed away recently) and his friends clubbed together and paid a fortune for an electric wheelchair for him. It was fantastic for a few months but then he needed something a bit bigger and with more support so the wheelchair service provided one. I would be very wary about forking out lots of money for one when you may be able to borrow one that is suitable for Peter. Help is out there if you keep asking!

Good luck and best wishes to you and your family.

Andy

magic
21st June 2013, 17:56
Thanks you folks. Made referral to wheelchair services but P going into hospital for PEG operation. Going in Sunday and procedure on Thursday! Anyone els been in hospital so long before procedure done?

Magic

roy
21st June 2013, 18:59
Hi Magic,

I'm afraid I can't give any advice on that,but can't help thinking with bed shortages as well as costs why,
But also just wishing P comfort while he is there please send him my very best.

Roy.

Terry
21st June 2013, 20:31
Hi Magic;
Have not heard of that before, normally a day or two. Leeds must have bought all the hospital beds from this area and are now trying to fill them.
Hope all goes smoothly, Terry

magic
21st June 2013, 20:56
Had multi disciplinary meeting here at home today and MND nurse said it was to allow for any test; eg blood, heart trace. They are also going to do swallow assessment as well. This second meeting was pretty productive and everyone agreed to meet here in six weeks time. Am pretty pleased that I have managed to secure these meetings . Passing your good wishes on to Peter and wil keep you posted.

Magic

john
22nd June 2013, 00:52
Hi Magic,
Irene went in on the afternoon for surgery that day but stayed in for 2 or 3 days to make sure all was well. She went for tests before the operation .That was at the James Cook hospital in Middlesbrough.

john

magic
22nd June 2013, 04:46
Peter going into Leeds General Infirmary. They seem to be making a lot of time for pre op tests. He has acquired brain injury and heart disease and his fatigue is pretty extreme so I am pleased they are giving him the time. Just going to miss him and fear that he may 'pick something up' when he is in there.

Magic

john
22nd June 2013, 07:16
I am sure they are just being cautious which has got to be good and will give you a little respite. The peg certainly sorts out the need for liquids and calories and will help maintain a healthy body weight.

John

berdbrain
22nd June 2013, 16:48
Good luck in hospital, I'm sure you'll be by Peter's side ensuring the best of care for him. I'll say my prayers and I'm sure you have a good idea but when my sis had the PEG put in it took about a week for the soreness to disappear and after that she never complained about it, she thought it was good, but as you know she preferred to put her own food in.....and do remember the duocal powder for extra calories to add to things...he'll need the extra calories.
And one last thing...since you posted your wonderful words about being able to feel the blanket of love that the family had wrapped Lynne in...I have used that in the words at the funeral and other times....it is such a wonderful expression and so true. When people say that it is a lovely expression I say 'yes a lady called Magic used it to describe us' Thank you so much X
with love and prayers
XXXXXXXXXXXXXXXXXXXXDebbieXXXXXXXXXXXXXXXXXXXXXXXX XXX

magic
22nd June 2013, 21:36
Thank you so much for writing that birdbrain. Feeling apprehensive but am aware of the benefits PEG can bring. Will plague my friends on the forum with any uncertainties and know I have support here.

Magic

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