It’s been a long time since i posted on here, my husband was diagnosed 14 years ago at the age of 26. In 2014 he had the DBS op due to dystonic like walking. The only way of describing it is that his legs just flail outwards while he is walking, he describes it as walking like Basil Fawlty, he just can’t control them. The DBS worked really well for a long time. It came back occasionally but usually went again. Then more recently it has gone really downhill again. We contacted his Parkinsons nurse who specialises in DBS and changed some settings, but nothing worked. He is due a battery change soon, that may help although the nurse doesn’t think it’s anything to do with that and says is balance and gait. This last couple of weeks I have noticed that if we are somewhere quiet, he seems to walk fine, if its busy his walking goes again. Yesterday, we were walking, and he was fine until we saw someone we knew, when they had gone past his walking was normal again. I’m beginning to think this is anxiety causing this walking problem.
I know that he feels very self-conscious, especially when his walking goes as people stare at him, the irony is that when he is walking normally no one pays any attention. We went to Greece earlier this year and despite choosing a smaller hotel for him to get around easier and less crowded, he spent the whole week walking badly and feeling horrible and self- conscious. Despite having it for 14 years he is still only 40 years old. I hope this all makes sense.
Has anyone else ever experienced this and have any advice for me please? I will be very grateful for any ideas. Thank you for reading and sorry for such a long post.
I keep reading your post and wanting to reply with some constructive suggestions but in all honesty, don’t think I can help much. My feeling is that anxiety is probably not the cause as you suggest but it may well exacerbate the symptom and it is not hard to understand his anxiety when he feels so self conscious. There is no easy answer to that, things that look unusual or that people don’t understand inevitably draw looks and/or comments and it is my personal view that it would cross the minds of few if any, that the cause might be a neurological condition such as Parkinson’s. None of which helps you. The only thing I can suggest is that you ring the help desk for advice and hopefully they will be able to set you off in the right direction in getting the right help for your husband,
I am sorry I can’t give you any answers or suggestions that might help apart from the help desk. If I have a ‘light bulb’ moment or come across anything that may be relevant I will be sure to pass it on.
My best wishes to you both.
Thank you for taking the time to reply. I know it’s a difficult one. We are still trying to work it out with PD nurse. It has been a good few months now. It’s so complicated.
Hi yeah i definitely know what it feels like i got diagnosed at 36yr I’ll had been told that i had it for 4trs before that mine was very aggressive had dbs 10yrs now i went through abit of a moment couple years ago i went all to shit.Then they introduced Entacapone as a add on or so amantadine this really worked but my walking getting better day by day go to local fitness centre exercise in pool all so sauna, steam room doing low weights morning and night getting stronger. I’ve felt worse since cold weather byut stay strong i also had rechargeable dbs .
Hi, thank you for replying.
My husband has just been out on to antacapone, so we shall see if that helps then. He goes to the gym also. He is due to have his battery changed soon and he will be changing to the rechargeable battery, which will be much better. I can’t help feel like it might be the battery running down but his nurse says not.
Thanks again for your advice, that’s really helpful.
I wrote a really long reply to this which showed up as “pending” and then disappeared. Frustrating.
Anyway I was diagnosed back in January but have probably had PD for about 4/5 years. First sign was a shaking leg and then walking became more dystonic. Bottom line is I have the same issue as you describe. If I’m in the countryside with no one around walking is generally ok. In London for work it’s fine inside the house, but go onto the street and toes clamp up and walking becomes funny. I sense anxiety and a negative feedback loop and so try various mindfulness techniques such as focusing on sounds but have very limited success. I also vape a bit of CBD while walking which helps loosen the limbs a little but it doesn’t help with the gait. Things can slightly improve after 30 minutes or so. It also makes me think that anxiety has an element to play, as by that stage walking has become more “normal”.
Strangely running is actually not so bad. Not perfect but considerably better than walking. Recently when it’s really bad I even run 10 steps and walk 4 and those walking 4 are ok. Thinking I could look at increase the number of walking steps, basically trying to retrain the neuroplasticity of brain in a way that is supposed to help with Dystonia.
My meds are generally very low, 40mg Propranolol and 50mg/12.5mg Madopar both three times a day. Not been so bad I need to consider DBS yet but interesting how similar things sound.
Hi KDW, I have a similar issue. My left leg only will suddenly start flailing out when I walk. The odd thing for me is that it does not happen when I am off my meds. So last tablet of madopar at 4.30pm by 8 my walking is fine. In the morning I often go for a walk about 7.30, again no meds and I am fine but if I take my meds at 7.30 then 15 - 20 mins in I will have a problem. However at this point. If I briefly stop go onto my tip toes and start to walk again with a slightly sideways crab like gait it confuses my leg and I can recover to walk normally. That’s 1 aspect but during the day when I am on my meds it can be worse. About 30 mins from my next dose I get a wobbly leg which is a sure sign of an imminent walking issue. It’s not a tremor just my body seems to lose confidence in my left leg and the walking issue starts. I see it as a withdrawal issue. Then there can be some improvement and the 30 mins into the new dose it can kick off again. It’s like a changing of the guard my medical dopamine is conflicting with my natural dopamine. When either is in charge I am ok. Just some other observations breaking in into a slight run can fix it for me. I can be walking with a problem but stairs up or down can be ok. Changing incline can set me off negatively or positively so making adjustments. If I stumble it can either fix or break my stride pattern. I have absolutely no doubt that anxiety is a huge contributing factor but I categorically don’t believe it’s a low meds situation. Just 1 last thought my problem started when I first went on to entacapone. I came off it and had no problems for c 6 months before it came back. So I concluded that the entacapone was magnifying the impact of the madopar which my body was objecting to. I think overall it is some sort of intolerance to madopar. I find the problem humiliating at times and it puts me off going out in public so I know exactly where he is coming from. Sorry I don’t have anything more enlightening to add.
Really interested to see this conversation. This is something I’ve been struggling with for at least a year. My symptoms started with a dystonia like presentation in my left foot , toes curling over etc. So when my left foot/lower leg started to misbehave my assumption was that it was not enough meds that was causing the problem. Fast forward a number of months and a number of changes in meds, including the addition of opicapone, the symptoms are worse. My neurologist and neurophysio both seem to think it’s more of a dyskinesia kind of presentation.
I definitely find it is exacerbated by even a tiny amount of anxiety. I can be walking along the road fairly normally and then I see someone coming towards me and my leg seems to do it’s own thing, which at it’s worst make’s it look like a ministry of silly walk contender.
Tempted to see what things are like without the opicapone?
I have the toe curling issue but think it’s separate from the silly walk as it does not seem to manifest together. It’s interesting that you think opicopone exacerbated the problem as entacapone seemed to do the same to me
Another aspect of the wobbly unstable leg precursor to walking problems is I tend to lock my left leg for stability almost hyper extending my knee. I found some relief by forcing myself to stand with a bent left knee rather than a locked knee and wearing strapping designed for knee hyper extension
Totally agree. I think toe curling is more of an off symptom whereas the funny walk is more of an on symptom.
Also totally identify with the hyperextending my knee. I had a session with a neurophysio recently who picked this up and cautioned me to be careful about this. Interested to know whether you have tremor dominant PD?
No I don’t have a big problem with tremor at all
Have you seen this article?
No I hadn’t seen that before - really interesting thanks. If you fancy a chat about our similar experiences I’d be interested?
I have the same walk. 100x worse when i take my co careldopa.
No medication = no strange walking. It does rear it’s head sometimes if im walking in public and someone walks past but usually only a few steps and this doesn’t always happen.
Less meds means stiffer movements though.
It really does baffle me.
I’ve recently been upping my intake of CBD drops and that seems to help a bit. Early days but…
It’s so strange as mine doesn’t seem connected to medication. Yours seems more like a medication induced dyskenesia:
For me it’s one of the most frustrating things about PD that everyone’s symptoms seem different. It feels like it’s really up to me to find out what works rather than there being a solution to a specific symptom.
Interesting idea about the CBD oil. Any recommendations for where to get from. The other thing I’ve wondered about is the CUE device. Although this is often used for freezing the articles seem to indicate that using some kind of artificial cue may help. Another thing to think about!
@buzbyc There are quite a few places nowadays but I’ve settled on Hempura. Not masses of choice but CO2 extraction, reasonable price and UK based company. Once you’re on their mailing list you hear about their deals (3 for 2 etc).
Have also read about CUE and sounds positive but I’m not really freezing.
Reminds me though about music and how that can help with movement. Someone was recommending listening to dance music from your youth!
Do you mean the Cue 1 from Charco Neurotech? I have 1 but I have put it aside for the moment. I am absolutely convinced it helps with my fine motor skills but I find after a while the adhesive patches cause an irritation for me and the vibration can be come irritating