Hello all. Apologies for my ramblings, and this is my first forum ever. I joined the Forum last month looking for a neurologist in the private sector for my husband, having been informed about the likely 12-month+ NHS waiting lists.
Once the “patient-only-allowed-in” obstacle was cleared at the time of booking, I accompanied my husband to his appointment for support, at his request. We had prepared a list of observations, questions and concerns and had been advised to prepare and perhaps hand over a completed copy of the NMSQ downloaded from this site, to provide a snapshot and overall background picture to aid assessment.
The neurologist’s preference was to carry out his assessment and examination without any peripheral input. His conclusion was that PD was indeed likely, albeit at a very early stage. The agreement reached was that a course of dopamine substitute and a follow-up appt should help confirm a diagnosis (or otherwise), with the possibility of a DAT scan back in the NHS (we are self-funding). We had done some homework and were not surprised by the proposed course of action.
However, having learnt during the appt that my husband was a skilled motorcyclist (he has been riding for almost 40 years now, with not one accident, and we have toured around Europe many times), the consultant strongly recommended stopping this activity due to “slower reaction times” - driving a car was still OK for now!). I wonder - was this a reflection of his own attitude towards motorcycling, or was he genuinely concerned? I like to think the sentiment was noble. Nevertheless, Hubby took the advice on the chin which was left quivering.
I have since looked for stories of motorcyclists who are continuing their craft with PD, and the evidence seems to be mounting. I am not sure how we can challenge this advice - in the event of any accident, would the consultant not inform insurers that he was not supporting the activity?
I hope you motorcyclists here are still able to enjoy the rides out.
Thank you to those of you who have had the stamina to read me.
Hi @Soph21, Upon reflection I can see where the consultant is coming from, once Parkinsons Disease is diagnosed it is said that you can’t operate heavy machinery, I use to drive a 44 tonne, 60 feet long lorry(a Draw Bar). In my mind I could still perform the role of lorry driver but Parkinsons brings into play balance issues which I have but I am a competent car driver, if I wasn’t my wife would soon have something to say about it !! The Consultant is only covering himself by taking away your husbands pleasure, he may well be a great motorcyclist and could still ride well. It is the what if scenario, in as much that if he said your husband could continue to ride and he then has an accident no matter how small, who takes the wrap for it ? The Consultant or your husband ? Life deals us some poor hands but we have to move on.
Hi soph21 i was diagnosed nearly 2 yrs ago i was told by my consultant to carry on as normal pd is a slow disease i too ride a motorbike but it all depends on your husband,s condition i have a resting tremor in my left hand my meds dont work for me as your explained on here we’re all different wot helps 1 doesn,t help others take care
Hello Les and calv1960
Thank you both for your comments, and points taken.
We will do our best to work around our challenges, and hubby always has a positive attitude. I don’t see him having a pity party for long.
I am new at this forum and clumsy navigating through it. For example, I can’t seem to be able to “create a new topic” or select the right category. I will persevere, but excuse where my messages land!
Hey soph21, welcome. I find the forum very clunky and not user friendly, which seeing as we have (or are connected to) Parkinson’s isn’t maybe the greatest design from PUK.
As for the motorcycling, he’s been doing it accident free for 40 years, he’ll know himself how his skills are, if he thinks his reactions and balance are ok then he should continue doing it, anything that brings him joy and an escape is to be welcomed. Only thing to mention, I’m sure you know already, he just needs to inform the DVLA.
Thank you DB123 for your heart warming reply. I do like your comment about the forum’s clunkiness in our context !
You are absolutely right, he will know.
I am a little worried about DVLA though. We know that once confirmed, he will have to declare his condition and from what we understand, this will not necessarily mean a ban, but won’t he have to show proof of his consultant’s approval? Or doesn’t it work like that?
Hi again soph 21 when you decide to tell dvla they will write to your consultant there’s nothing to worry about you won’t be banned from driving you will go from a full licence to a 3yr medical licence i contacted my insurance also, they were not bothered about parkinsons they did,nt increase my policy, ive had no problems at all it is a bummer going from a full licence to a medical licence like people say carry on as normal
Thank you Calv1960, your explanation is much appreciated. We have a lot to learn, and this is making the journey easier.
I guess I will be back with more questions and hopefully, in time will be able to answer some too to give back a little!
I am keen motorcyclist and cyclist. Sorry but I think the consultant makes a good point. However I also think they overstate it.
The symptoms can creep up insidiously. Your husband might not realise how badly he is affected.
It’s not so much the reaction time, but the delay initiating movement.
I think your husband should continue to ride but might consider altering the controls so front brake is controlled by the bits of him that are least impaired, eg perhaps foot, perhaps swap to left hand if he happens to be affected asymmetrically. Such setups exist for amputees and similar folk
If he is required to resit his licence test he might be surprised by himself when he does the emergency stop test.
Hi Soph21
Like your husband I have been a keen biker for many years. I was diagnosed nearly 10 years ago. At that time it was emphasised to continue my life as close to normal as possible and I have tried to adhere to this as much as I can. I have tremors in my left arm. I found that I was becoming weak on that side and riding my bike was not the pleasure it used to be. I was lucky enough to subsequently purchase a trike (Can-Am) and the enjoyment has returned. It is semi automatic (you can get fully automatic) and of course balance is not an issue. I have always tried to find alternatives to keep my life as normal as possible while able. Exercise and doing what you enjoy is an important part of dealing with Parkinson’s. It all depends on your level of Parkinson’s and being honest with yourself and your capabilities. I know the day will come when I have to hang up my biker boots but I am having an enjoyable ride until that day dawns.
Hi I was diagnosed with PD when I was 39 - first symptons when I was 21 - so you can probably understand I was in a bad way. I am now nearly 57. However with the right medications I have been able to lead a relatively “normal” life until recently and have ridden a 650CC motorbike up to last year. I have been given a 3 year driving licence, I set myself benchmarks. I would never ride the bike when medication due, or wearing off., nor if I was feeling “out of sync with everything”. I made sure my reactions were top notch as riding a motorbike makes you so vulnerable.The riding of the bike gave me such freedom and made me smile. I decided that I would sell my bike when it sat in the garage more days than when I rode it because of the PD. This happened last year - Ive had a motorbike for about 35 years and it was heartbreaking, yet I knew I had made right decision. If your husband is truthful with himself - and still believes he is fit enough to ride bike - do so - but make allowances for medication wearing off periods. Maybe lower CC, weight of bike but dont give up. Breeze
Hello all, and many apologies for responding so late to your supportive messages which are so appreciated. I have only just read the posts from end Nov onwards.
I hadn’t had the heart to get back onto the Forum for a while, busying myself with sourcing research papers and the likes to prepare for our next meeting with the neurologist. Also many conversations with the helpline (thank you if you are reading this, you are all saviours), and with the Brain and Spine Foundation.
Well, turns out the consultant is fully anti-motorcycling (admitted it during the second appt), which drove his earlier advice (excuse the pun). However, he was very professional and clarified the position with DVLA with no foreseen obstacle as things stand currently with hubby. The eventual delay to initiate movement was mentioned (as did Miles000). Hubby will be happy to look at different bikes and/or adaptations (thank you Breeze and Briiler) if they can keep him on the road for a while longer. He is also sensible and like you, knows that this will come to an end and he is extremely cautious on safety.
Hubby started a course of Sinamet then Sinamet Plus at the end of November as a diagnostic tool but, as the consultant suspected and despite his earlier suggestion of “possible” PD diagnostic, the positive effects of the meds were not noticeable, so meds stopping and the next step will be the famous DAT scan to confirm or otherwise.
Meanwhile, back at the ranch, time to inform DVLA and insurers now things are clearer on the motorcycling scene (I have been doing all the driving since November as hubby didn’t dare get near the wheel as long as he hadn’t contacted them). It seems DVLA needs to be informed even if diagnosis suspected but not confirmed?
Thank you again for “listening”, and I hope 2022 has made a decent start for you all.
Has been good to read this thread as a biker who’s still on the road with Parkinson’s - still on an old Harley. For as long as I feel sharp enough in my thinking, secure enough in planting my feet on the floor from the footrests when I stop, and physically able to operate everything I’ll keep riding. A bike leaves little room for error and I feel confident it’ll become clear when I can’t do it any more. Struggles with Moving the bike at low speed, parking, manoeuvring it in out of the garage etc could be the warning signs to take notice of. Fatigue is a big thing as it’s a physical and mental work out on a long journey- (the physical aspect can be a good thing). But I guess as with all things Parkinson’s related there are so many variables for everyone - but more than happy to bounce some motorcycle & Parkinson’s conversation around for mutual encouragement and support so I’ll check in on this thread. For info, I informed DVLA immediately, medical license issued, informed insurance company, no additional premium - honesty and transparency are important. If adaptions need to be made there’s some viable options out there and as others have mentioned trikes can be a lot of fun too!
