I have Atypical Parkinson’s & my issues are mostly my mobility. I suffer with “Gait Freezing”. Not now & again but all the time. These instances happen when I stand still for more than 2-3 minutes. Of course I try not to get into situations when I have to stop, like crossing the road or queuing for anything.
So today I stupidly went into my local bakers for bread. I leaned against a wall & waited, half resting on my walking stick. Three minutes passed & when it was my term to be served I could not move an inch. Having bought the bread I had to be helped to the door & once I was moving I was ok.
But I did feel so stupid & it does put me off going into shops . It is a Godsend that supermarkets do home deliveries, otherwise I could not cope.
Hello Steve2
I too have ‘freezing feet’ not as frequently as you it must be said and it doesn’t take much imagination for me to understand not only how frustrating that is for you but also how it can rob you of confidence to do everyday things like going to the bakers. My answer when out is basically not to stand still - a classic is getting caught by the level crossing barriers near me coming down which can result in a wait of several minutes if they don’t lift between the trains going in both directions - I should be able to avoid this since I know the times of the trains but such is life - and I just move from one foot to the other or take a couple of steps forward then back.
It can happen to me at home too usually when the doorbell rings ‘unexpectedly’ or the ‘phone rings and there is a need to move fairly swiftly so people don’t think I’m out or I miss the call; not always successfully it must be said, The doorbell is the worst thing as I try to keep a phone near me.
You mentioned online deliveries, if possible I will name a time slot so that I can be in the bedroom (nearest to the front door) or if it’s an all morning/afternoon delivery keep an eye out for the delivery van so that by the time they get to my door I have got my feet moving and don’t keep them waiting for what seems to me to be ages. Regulars like my postie and some couriers know I am slow and kindly wait for me to get to the door. Where there is space, when ordering, I will always write that I may need time to get to the door.
All of the above has become so much a part of my routine that I don’t even think about it now. Incidentally I have found several small techniques that can get me moving - looking up and ahead (particularly if moving through a doorway or similar), swinging my arms as if marching, saying ‘big steps, big steps’ out loud (but under my breath if needs be), and depending on where you are and what you can easily reach, drop something light on the floor to step over or kick along the floor - this I have found to be ;particularly effective. Have you found anything that works for you?
I hope it doesn’t deter you too often from going to buy a loaf or pint of milk. There is no need to feel stupid. I just say something like ‘sorry to keep you waiting, my feet will move when they are ready’ or if someone is ‘tutting’ behind me because I am being a bit slow I will turn to them and say very deliberately ‘I know my Parkinson’s frustrates me too, it is such a pain struggling to get my money out of my purse (or whatever is making you slow) they usually instantly back track ‘…don’t worry, take your time …’ etc. In your shoes I would probably say something like ‘would someone please push me towards the door so my feet know they are meant to be moving, they’ve gone on strike.’ You didn’t choose to have Parkinson’s Steve2, none of us did. So don’t feel stupid or apologetic. Stand proud, do what you need to do to live the best life you can and if others don’t get it then they are the ones with the problem not you.
Tot
Personally this is the worst part (so far!) of this darn disease. But I do find that people are very understanding and want to help if you’re struggling. It took me a while to stop feeling embarrassed about getting “stuck” and have found what i always felt to be true. Asking for help provides a
positive experience, for both helper and the hlpee.
I totally agree Rabbit1, but you can only do that when you reach that point, as you have found, when you stop feeling embarrassed, or alternatively accept having Parkinson’s is simply the cards fate has dealt so there is no need to feel apologetic, embarrassed, stupid, a nuisance or a 1001 other things we can think and feel that stops us asking for help. Easy to say, not so easy to do.
Tor
