hi folks hope you are all as well as can be ?
i just thought i would give you all an update on my stairlift that was finally finished last week
well its amazing and dont know how i managed without one lol even though i was a bit upset about having one.
i hum the thunderbirds tune when i ride on it wich makes my wife laugh !!!
regards to all mick 
Hi Mick
I am so pleased for you, and if you wanted to sing a different song you could
always try âYou raise me upâ lol. Thatâs ok for going up, but for the life of me
I canât think of one to come down!
Pam.
What about Status Quoâs âDown Down Deeper and DownâŚâ? How fast is it and do you need to pimp it?
Hi Mick⌠youâve made me jealous now⌠wish I had some stairs so I could have a stairlift. Used one at a hotel a while back and loved it!
Got that tune in my head nowâŚ
Pat x
hi guys
thanks for the comments
glad you all cant get the tune out of your head lo its in mine !!!
its not very fast and yes the kids want to pimp it up lol
should i let thyem cos they ride on it they said
keep cool folks
regards mick x
Hi all
I am new to the site my daughter who is 27 has primary progressive ms. Can anyone tell me what I should do if I disagree with the OT decision of having a through the floor lift. Its upsetting my daughter so much we cannot understand why not have a stairlift put in. The OT I find to be very abrupt and while she can manage on crutches she is struggling with the stairs. The OT says she could end up in a motorised wheelchair which is scaring the life out of her. This is why she says she needs a lift with this grant, I know my daughter and I know this is distressing her so much.
What can I do if I disagree with the OT decision as she isnt approachable and is connected with our local housing who recently moved my daughter house. It seems like an awful lot of disruption moving doors, knocking walls down, new fire window, radiators moved and she has two young children
Can anybody please help or point me in the right direction
Many thanks
Julie
Hi Julie,
just tell them you DONT want one, they tried to make me have one,they wouldnt fund me for a stairlift so we paid for it our selves it cost us ÂŁ1500 for a reconditioned one,its your decision to make,you dont have to have one,
dont be bullied by them,tell them you will cross that bridge when you come to it,how the heck do they know how your daughter will progress,have they a crystall ball⌠i get so annoyed with the SS âŚ
J x
Hi Julie, I think thatâs absolutely terrible!!! And thereâs no way that she can know that your daughter will need a wheelchair in future. Many of us on here use mobility aids for outside but can still manage to get around our own homes!
As this OT person is so difficult I would be tempted to go above her head. You could call the office where she is based and ask to speak to her manager. Just explain why, at this point, you would prefer the stair lift and that she has upset your daughter.
On other hand Mrs Jâs advice is very good. Just say NO!
If OT will not fit the stair lift, have a look on this site about grants to help with aids and adaptations. At top of screen youâll see a bit that say âSupportâ. The grants info should be somewhere in there.
Also the stair lift people will often offer no-interest credit deals and have used stair lifts which are lower cost.
Donât be bullied.
Sorry⌠the screen froze but I managed to post without signing offâŚ
IF and when your daughter needs a wheelchair, she will make that decision for herself.
In the meantime I hope your daughter will come on here. We are a supportive bunch and love having a new member.
All the best,
Pat xx
Thank you for your help I have phoned to speak to the OT manager and to complain about how she has upset my daughter and shock horror she is not in the office until Monday but will speak to me then. I arent letting them bully her into a through the floor lift. Poor girl is so upset wondering where this journey with MS is taking her
Hi Pat
Me too the reason I also came on was to show her she isnt alone. She is coping with it well most of the time but having her down days; I will do my best to get her on here.
Julie x
Hi Julie
Thatâs awful, you or your daughter definitely should not be bullied into having something she doesnât want, stick to your guns.
No one can see into the future to possibly know how ms will affect your daughter, as it is totally in predictive, and affects people differently. I am sure if anyone could predict, they would make a fortune.
Your daughter would find it helpful if she visits this site as well, we have a lovely friendly bunch on here, always willing to listen and offer helpful solutions when we can, both of you are most welcome.
Best wishes.
Pam x
Hi Julie
Thatâs awful, you or your daughter definitely should not be bullied into having something she doesnât want, stick to your guns.
No one can see into the future to possibly know how ms will affect your daughter, as it is totally in predictive, and affects people differently. I am sure if anyone could predict, they would make a fortune.
Your daughter would find it helpful if she visits this site as well, we have a lovely friendly bunch on here, always willing to listen and offer helpful solutions when we can, both of you are most welcome.
Best wishes.
Pam x
Hi Julie
Thatâs awful, you or your daughter definitely should not be bullied into having something she doesnât want, stick to your guns.
No one can see into the future to possibly know how ms will affect your daughter, as it is totally in predictive, and affects people differently. I am sure if anyone could predict, they would make a fortune.
Your daughter would find it helpful if she visits this site as well, we have a lovely friendly bunch on here, always willing to listen and offer helpful solutions when we can, both of you are most welcome.
Best wishes.
Pam x
Sorry, hand tremor caused me to post 3 times !!!
Pam x
Sorry Julie forgot to say to tell your daughter not to take any notice of the OT, i have had MS 22 years and still dont need a through floor lift,for some reason they are pushing people into getting these,think they must be on commision or something,
also your daughter will find her own way of coping with the MS,it takes time,thoughâŚtheres a newly diagnosed forum on here maybe that would be ok for her,to talk online to people her own age.
also if they wont fund a stairlift, the MS society do grants for any aids needed maybe you could try them.
good luck.
J x
Thank you all so much for your support. Its nice that somebody understands where I am coming from. I have told Janine about the site and hope she will join to talk to other people at the moment she is up and down with her moods and very frustrated and scared xx
Hi I think they must be on commission I am trying to get her to join the group I think it will do her good to talk to people about how she feels she doesnt always tell meâŚbut i know when she has been crying when i go to see herâŚshe thinks i dont!!
I wil see how I go on Monday but if they wont do anything thank you for the suggestion of the MS society
Julie x
Pam
I have to say I already feel better knowing someone understands what we are going through. I keep telling Janine what you have all said and I can see her mind ticking thinking about visiting the site.
And yes this OT should have a crystal ball she would make a packet wouldnt she. In fact I wont bother taking her to her neurologist appointment I will tell her consultant the OT said its all down hill !! I honestly dont know how many other people with MS she has treated but I feel sorry for them if they were treated like we were.
Thanks again
Julie x
Give her our best wishes. She is very young to have PPMS⌠but we all know how hard it is and can help to support her and show her she is not alone⌠AND that there is life after a diagnosis of PPMS.
Also tell her that thereâs a huge amount of work going on right now, all around the world, trying to find effective treatments for PPMS. Itâs only a matter of time and new research projects are starting every day!
Pat xx