PD and Motorcycling

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.

Les

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

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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!:grinning_face_with_smiling_eyes::roll_eyes:

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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 !:grinning_face_with_smiling_eyes:
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!

Hi Soph21

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.