Is it wise to cycle after DBS?

[Norton1]

I'm in a dilemma here; I have a friend who has had DBS and wants to cycle. He bought a two wheel bicycle after a test run on an unused car park where he was quite safe. However, on his first cycle, he fell off twice into the road which fortunately did not result in a serious injury. Intuitively, after this experience I feel that cycling for him is not a good idea. What are others experiences/opinions trying to cycle after undergoing DBS?

[soup]

Grab life with both hands. Keep going on safe ground until he doesn't fall off.

(He could cycle before Parkinson's couldn't he? I mean, DBS is an excellent therapy but it doesn't work miracles!)

[Norton1 in reply to soup]

Thank you Soup,

What I was wondering when I posed this question is, after having the DBS operation, can it affect your balance to a degree that would be permanent, thereby ruling out cycling? As a PwP myself (on Sinemet) I would like to accompany him on bike rides, but obviously not if the risks of falling off his bicycle are too high?

Regards

Norton

[Thumbpick]

Google "trikes" (adult 3-wheel bikes). They're expensive but relatively safe for PwP. They come in basically two styles, delta and tadpole. I bought a delta-style and only rode it twice before I was in an auto accident and now can no longer use even the trike. It's for sale if anyone is interested (I live in Wash., DC area). The one I have is green and can be seen at:

greenspeed.com.au/trike...

Greenspeed's Anura delta trike. Superior comfort, easy mounting, a higher seating position. Great for people getting back into cycling or even those starting out!

[jonroberts in reply to Thumbpick]

Way type of symptoms did you experience after your auto accident? I had DBS a year ago and many symptoms were blocked. I was in an auto accident in January and my head hit the airbag that deployed. My symptoms returned and its been very frustrating. I am exercising daily and going to physical 2x/week. My PD Movement specialist noticed there was not enough electricity going to the right brain that controls my left side. She reprogrammed me and thinks we may have to put a new impulse generator depending on the X-rays and how the current settings work. Any complications with your accident and DBS?

[Norton1]

Hello Thumbpick,

Thank you for your reply, it seems cycling can be a dangerous pastime whether or not a PwP has DBS.

A trike seems a good idea though.

Regards

Norton

[jeffmayer in reply to Norton1]

I have been cycling 30 years come off Saturday nothing to do with pd hit some cowmuck straight down

[billw91]

I would be concerned about him falling and hitting his head and if this might cause the electrodes to move. I really think he should talk to his neurologist about this.

[Norton1]

Hello billw91,

You know what? You're right.

Thank you for the suggestion.

Regards

Norton

[froggatt55]

"Who Dares Wins" is the motto of our SAS. If you go off road - disused railway lines are best - take a friend or Mobile (cell) phone - Wear a hat and let people know where you're going and you'll be Ok. Cycling is good for you - I haven't had DBS but I do have balance problems but following these guidelines (oh, and take a chocolate bar - I take a Mars bar - and water) you'll be OK. On a cycle track, falls - providing you are not trying to break the sound barrier - are not so bad - my worst was last summer when I toppled over trying to turn ar low speed (I now get off and turn) and landed in a bed of nettles but only my pride was really hurt

[Norton1 in reply to froggatt55]

Thank you froggatt55 for your considered response to my question. Like you, I think cycling is a wonderful thing to do, especially 'off road' as you suggest. However, I am coming round to the fact that having DBS puts someone into a whole new ball game re hitting your head and damaging the electrodes? In the brain. Of course, its not only cycling that can lead to this, but I am thinking of damage limitation with my question.

Kind regards

Norton

[froggatt55 in reply to Norton1]

Hi Norton

I must confess that I hadn't fully taken into account, the very natural concern about possibly disturbing the electrodes. You would need to discuss this with the specialist - although I would still favour some gentle cycling if it's possible

Let me know if you ever get a medical opinion because DBs is still a potential for me in the future

Take care and all the best

Bob

[Norton1 in reply to froggatt55]

Thanks froggatt55 for your follow up post. It just goes to show that whenever we decide on a treatment action for PD we should always take into consideration the consequences of doing so in respect of impacting our lives.

Regards

Norton

[froggatt55 in reply to Norton1]

I agree Norton - but we should always do what we consider what is best for us and none of us can see into the future

How long have you had Pd? I am just entering year 11 of diagnosis and strongly believe that my exercise routine has played a large part of my still being relatively fit (although I cannot manage a full day of activity / socialising without a sleep at some point nowadays)

If you wish to google it, there is exciting potential coming from various researches into alpha-Synuclein which appears to offer the chance of killing off the protein which does so much so much damage to our cells. This could halt the progress of the disease or maybe - just maybe - reverse it. I had kind of lost faith in research because it seemed that the researchers were spending billions without a coherence that could shorten the time to a cure but this research has got me very excited - fingers crossed!

Kind regards

Bob

[Norton1 in reply to froggatt55]

Hello again Bob,

I am pleased we agree. You are someway ahead of me in respect of diagnosis (7 years). I follow the alpha synuclein research with interest. In fact, I take curcumin every day of late as some people claim it stops the build up in the brain. May I ask if you take anything such as curcumin to the same end?

Regards

Norton

[froggatt55 in reply to Norton1]

Hi Norton

No I don't take curcumin because until now I have never heard of it!

I'll do some googling myself to bring myself up to date. I wonder how they know that it has such properties because I am not sure that they can measure it in live beings?

Where did you hear about it?

Just one other thing, a local (Sheffield, UK) neurologist started that if he was diagnosed with Pd, he would start using Nicotine patches because of his belief in the neuro-protective properties. I am finding this tantalising but can find nothing substantive - I have tried emailing researchers but none have responded thus far) I think I will speak to my GP (I only see my neurologist once a year) to aid my research

I'll return after google session!

Kind regards

Bob

[froggatt55 in reply to Norton1]

Hi Norton

I have just googled curcumin and read a lot of stuff that is beyond me at the moment but I have copied this quote for you - perhaps you might tell me your experiences with the supplement?

Quote - Kawanishi et al. remarked that curcumin, like many antioxidants, can be a "double-edged sword" where, in the test tube, carcinogenic and pro-oxidant effects may be seen in addition to anticancer and antioxidant effects

My Email address is [e-mail] if you would prefer that

Kind regards

Bob

[rons]

I love cycling but the only time I get to try I am with my six yearold learning on his bike. I find the starting and stopping the hardest and with kids don't get much chance

To practice cycling. Hence I am not confident anymore stop its more dangerous. My advice is to practice off road on well paved paths a lot before venturing on the road but that means getting there first.....

Good luck I'd keep trying even with Dbs. Put it this way, if you have a head injury when cycling its bad anyway.

Ron

[Norton1 in reply to rons]

Thank you Ron's for your post. The two times my friend fell into the road it was while starting off. It has knocked my confidence, so what has it done to him? Life with DBS is improved immeasurably for those that have had the procedure, but we surely must be aware of the consequences of exposing ourselves to some situations even accepting that life is for living.

Thank you for contributing to the discussion.

Regards

Norton

[Pelley]

The reason I persevered through two post surgical staff infections and five freakin' brain surgeries in one year is so I could have my quality of life back. It's so I could go cycling, or skydiving, or scuba. If one has to constantly be on guard and "careful" not to do anything that could possibly.... or might just cause injury, what have I gained?

[Norton1 in reply to Pelley]

Hello Pelley,

Thank you for putting your attitude to life so eloquently. I admire it in some ways, but without knowing all your circumstances it is difficult for me to understand entirely, but supposing you were to severely injure yourself, say, as a result of skydiving, do you have someone to look after you? My friend fell onto a busy road, luckily when no car was coming; had it been otherwise and he was paralysed, I hate to think of the effect on his wife and children and rather selfishly on me because I encouraged him to go for a ride out! No, take risks by all means, but think of the consequences for others too!

Regards

Norton

[Bobbyzee]

I have a 27 speed tadpole trike. You be amazed by how much you can enjoy riding again. Fear and Pd don't mix.

I can ride with a friend on a road bike. You go up hills as slow as you want. Do yourself a favor and go to utahtrikes.com

Bobby zee

[Norton1]

Hello Bobby Zee,

Thank you for your enthusiastic reply. The person concerned is not me, but a friend. You are co right, a trike is the answer, trouble is Bobby, he lives in an apartment and only has one space allocated him for a two wheeled cycle, so a trike is not an option. Anyway,I have shown him the replies to this question an he accepts total responsibility if anything happens to him, but he will not be cycling on the road, because of the added danger. Thank you again for you helpful reply.

Regards

Norton

[hopptimisten]

Www.christianiabikes.com

Go, go, go...

Don’t give up, there are always more possibilities. I had DBS November 2016.