My consultant has dropped a bombshell this week advising me I shouldn't be driving!!! I have collected more joint damage in my hands and wrists in the past 11 weeks whilst waiting for abatacept to work. Not being able to drive is my worst nightmare. I have good grip with my left hand but my right hand grip is really poor. I have had hand surgery which was unsuccessful. I thought I would be able to drive if I had my power steering adapted to "featherlight" steering, but my rheumy has advised my insurance company won't cover me with a poor grip hand. Anyone else in this situation? Will be looking at mobility scooter but I will be so restricted with where I can go, can't take a scooter down a dual carriageway and I can't walk to the bus stop. I wouldn't mind if I had this news at 84, but not at 44.
Unable to drive!!!!: My consultant has dropped a... - NRAS
Unable to drive!!!!
Just a couple of years older than you and in a similar boat. Have had a horrible 2 years and spent quite a bit of that time unable to drive (have not felt safe or it created too much pain) and housebound. Bought a mobility scooter in April and although hate having to use it I have benefitted from being able to get around both mentally and physically. Because of living in the country thought would use both around home and if we went out as a family so chose one of the larger ones that could come apart to go in the boot rather than a pavement one but the base piece is still too awkward for me to handle on my own but at the moment not often in a position of being able to go on my own therefore usually have hubby or kids with me. It surprised me how much I use it outside at home though around the garden and hoeing/weeding from it, meeting the kids off the bus, walking! the dog. I started Abatacept last November and it has improved my situation from what is was but I don't feel is enough to be able to live properly. 3 weeks ago we added Hydroxychloroquine (started off on this 27 years ago before falling pregnant) into the mix and things have changed and just hoping it will be a long term improving solution. Before buying/renting a scooter long term I would suggest using one at a shopping centre and trying different models there around town before trying them again at a mobility shop especially if you want to take apart to transport and depends on what position you are most comfortable sitting at for any length of time (most seem designed for you to sit with your knees at 90 degrees).
Hi thanks for your advice about trying all the scooters. I have been looking at them and most of them are designed for you to sit at 90 degrees which would be hell for me.Glad the hydrox is helping you with the abatacept.
My choice came down to the Sterling Sapphire or Roma Sorrento as both have foot space between the wheel and tiller rather than raised all the way across. Also depends whether you want one that will go on the road or a pavement one. There is still chance that the Abatacept will help more as I wanted to give up at 3 months because there was not enough improvement but told there was nothing else suitable for me at the moment and should keep trying and at 6 months added in hydroxy.
This is my only hope that abatacept helps more but I am realistic that it won't change the joint damage.thanks for the scooter recommendations.
Hi
I'm so sorry to hear this, I too would be devastated if I could not drive......in fact I wouldn't be able to carry on working. Does your consultant mean forever or just until you get your meds working?
I guess if you feel it's long term then as well as a mobility scooter you could tot up how much it costs to run your car and use the money for taxis.......not the same I know but at least gives you some independence.
Good luck and i hope that once you get the right drugs for you things will be different x
Well my right hand has alot of joint damage and that can't get any better. the problem is my middle finger joints have fused and I can't bend my fingers much but I know people with far worse hands who are still driving. You are right I would probably save a bit of money without a car but I just can't get my head around it.
Oh how awful! I really feel for you as would hate to be in that position. Do you think your consultant knows what he's talking about, as perhaps worth trying to call your insurance company to ask them and ask about different hand controls?
But also thank you, as you've motivated me to go and do my injection! I was wavering as have a heavy day tomorrow - but you've reminded me how important it is to do everything I can to keep this dratted disease under control.
Thanks for your advice, I will see what the insurance company say. The worse part about it is I don't feel unsafe to drive,and I only do short distances.
The only way you can get around something like this, is to have a proper disability driving assessment. Contact DVLA and ask them where your nearest assessment centre is (it may be a place that does mobility adaptations). If they approve you to drive, then you should get your licence back again, though it may have restrictions put on it for what type of car you can drive.
Thank you so much for this brilliant advice. I am so determined not to give up on driving, I can't let my rheumy take my independence away just like that. thank you.
Hi again
Yes that is good advice from earthwitch, I too know people who have had help through disability assessment centre and who have managed to learn to drive with just one functional hand so it can be done. ( I also know of people with far more severe disabilities who drive provided the car is suitably adapted for them)
Good luck, hope you will post again if you get some good news x
I would wonder if his information is correct. I appreciate he's your Rheumy & should trust his word as he's treating you & should know your capabilities but it does seem extreme & I would loathe being in your position being told I could no longer drive & retain my independence, certainly if it wasn't totally proven. This link may help clear any issues roadsafetyobservatory.com/H...
Scroll down to the last part "Musculoskeletal Impairments". It may help you. As a matter of interest did he not consider if you wore a splint on the weaker hand it could benefit you?
Just seen earthwitches reply. I came across this recently when looking for myself as we're wanting to change to an automatic & it cropped up in a search. I was doing. Just tried to look for it now but blowed if I can find it. I'll have a look again tomorrow in history & if I find it I'll post the link.
Unfortunately I believe that DVLA do listen to doctors, and if a doctor reports that they believe you are unsafe driving, then your licence can be taken away from you. The only way to get it back is to have a proper disability driving assessment that proves that you can drive safely (with or without adaptations to your car).
I'm aware of this as my m-i-l had her licence taken away after her doctor advised but she had Parkinsons which of course affects the brain & in turn her capabilities as a whole. My concern is that in this particular situation I feel it unwise to accept the "bombshell" advice of only one medical professional as the end of driving. We don't even know it he's up to speed with the latest r&rs. He may well be correct, I hope not but it's possible, nevertheless I would prefer put in the same situation to have an assessment to irrevocably confirm that this is indeed the case. As Metal-legs is prepared to adapt her car she obviously would prefer to retain her independence, I guess most of us would. Many people with disabilities are able to including those who have lost limbs which surely is more of a hindrance. My h's cousin has no problems driving having lost the use of one arm completely & his girlfriend who lost her leg in a car accident & drives with a prosthesis fitted above her knee, both doing so having had adaptions to their cars. I did mention driving ability assessments (DVLA assessment) in my reply intended to send a link to Metal-legs but have searched my history & can't find the specific website.
I guess I'm not a lie back & die type of person & fight my corner, I think that RD has confirmed that in me & made me even more determined not to be "different" as far as humanly possible. I feel if others are being treated somewhat as a disabled person, they should have the option if they wish to do so also & not take things at face value neither consider it the end of all they knew before contracting a disease or if life is changed in some unfortunate accident if they appear to be being dismissed as such. I considered this was a point in question & was my view with my experience of others still continuing to drive safely in the face of adversity.
thank you for the link. I do wear a wrist splint when I am driving but I think it's the grip issue my rheumy is referring to. Thinks I am not in control of the steering wheel. I have a fully automatic car, which has always helped. Just feel so lost without driving. It's the worst news I could be given, but I am not going to give up on this.
Good. Hate being told I can't do something because of RD myself & would in your position check fully before accepting it. Hope you sort something out & can continue driving.
tetraplegicliving.com/disab...
try this link. I hope it is of use to you.
thanks for the link Sean, interesting reading
Hope you don't mind me asking but what is your grip measurement as mine are about 6/7 on both hands 9 is the best I have archived always worse in winter I have UCTD but started with reactive arthritis I won't list the rest I have problems with pain when driving I have bought a scooter to walk my dogs and I live in a small town in the middle of now where and my children live between 3 and5 hours away ,haven't been able to drive more than 40 mile in the last 6 months which was to take myself for hospital appointment . been off work poorly with a flare and like you I need my car hope you get on ok x ps I am 52 and I couldn't get my head round getting scooter I posted on fibro site and had some amazing advise I post know about my adventures on it gives everybody a laugh , but it has changed my life gets me out more when I am up to it ,with dogs attached . I had one negative response to getting the scooter from pure ignorance which upset me at time take care x
I have never had my grip measured? Do you mind me asking who would measure my grip?
Hi Metal-legs,
I have both wrists fused and a poor grip due to ra in my fingers and thumbs.
After my first fusion I was advised to go to a mobility advice and vehicle centre where they assess your ability to drive and assess what adaptations you need to your car. It cost me about 50 pounds but is probably more now.
They are called MAVIS centres.
I have a handbrake adjustor and panoramic rear view mirror and used to have a push button start on my old car as I couldn't turn the ignition key on that car.
I was assessed by a driving instructor and an OT. It was well worth it for my independence.
Don't give up.
Bevx
Some good advice on here already I would also suggest the following:
1) talk to your GP about getting a second opinion
2) get in contact with a specialist group - I have to admit that I am assuming that some charity/organisation will have an interest in this area. Check the internet or better still does anyone on here know of one. Also ask on other boards.
3) If all else fails talk to your insurance company - ask if they know anything - nothing to be lost at that point
Really sorry to hear your situation. Ive barely driven for over a year and found it depressing and expensive! I agree that you could consider having a driving adaptations assessnent, there may be an adaptation that suits, though getting the funding is anither challenge again
Best of luck with it and hope the meds improve things for you.
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