Probably a recurring subject, but I’m looking for advice, tips or just similar experiences that you may wish to share on this problem.
I’ve found that recently my freezing episodes have got more difficult to deal with. In particular my left foot will stay stuck where it is, which can cause me topple when trying to turn on the spot or move to my left ( e.g when in the kitchen and trying to turn or move to an adjacent work surface). Freezing affects both sides of my body but the left side is where most risk lies.
I’ve spoken to my neurologist and as I have a DBS (Boston Scientific) my neuromodulation nurse will see if any additional fine tuning can help, but a face to face appointment is unlikely for the next few months.
Hence the topic and question.
All thoughts and comments gratefully accepted.
Hi @col1210, I have exactly the same problem which came on about 2years ago. i am 75years old and was dx with PD in 2015 after living “in the slow lane” for around 5-6 years before that.
The last time i fell was 4 days ago , i was on my to bed having just turned off the lounge lights then tried to walk towards the door but found my left foot hadn’t moved but the rest of my body had. Fortunately I fell on carpet and no harm was done. The time before however, I fell outside on the concrete driveway , same thing having just got out of the car and tried to step away and close the door, only this time it hurt !!
I have seen my Neurologist who said it was a breakdown in the nerve system and explained that the message sent from my brain to the foot was for some reason interrupted and did not get there but the same message was received by everything else, hence the falls. He went on to say that it was not treatable by medication and referred me to a physiotherapist.
I have tried everything from counting, singing and moving from side to side, putting one foot in front of the other or starting with the other foot, as well as stepping over imaginary object’s.
The only thing that seems to help me is concentration, which may seem obvious to most people but not easy when it involves every step you take and is therefore constantly with you.
Slow down, take a breath and remember the danger. it catches me out when I go into what used to be normal mode and take it for granted that I can walk OK!!
I now use a 4wheeled walker when outside, it helps me to step out instead of shuffling but its too cumbersome to use indoors.
I am sorry this is probably nothing new to you but I thought you may want to know “you are not alone”
I feel that my next move would be DBS, however I admit to being very scared.
How is it working for you?
I’m sorry to hear that you’re having more trouble with freezing lately, but I’m glad you reached out. Sharing is a big part of this community and I’m sure many of our wonderful members - just like @malcT - will be reaching out to talk to you about their episodes and what may or may not work for them.
We do have some resources on the website that you might also find useful, including our freezing webpage and some community-mentioned tips for managing freezing.
I hope this helps!
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Thanks for the reply @malcT. I appreciate there is no easy solution to this problem but your experiences ring true with my own difficulty.
You mentioned DBS, I will try and reply separately but having scanned a number of DBS threads they already cover much of what I’d say. I had my op 5 years ago having been dx 8 years before at the age of 46 and primarily presenting with tremor. Hence DBS was recommended by my Neurologist and for me been a successful procedure in virtually eliminating tremor.
I think it could be the meds- I used to have the clawing before my meds were due but haven’t had it for a couple of years after they upped my Sinemet. It’s terrible I know - especially if you’re wearing closed in shoes
Not sure how much help this might be