Diagnosed at 38 - had baby at 41 - now only 42 and everything seems to be progressing way too fast. Freezing first started about 8 months ago - it last virtually solidly for two weeks during which time I stayed at my mums, it also coincided with me being given stalevo which made me mad, twitchy and wired. I stopped it and am now back on rasagline, pramapexiole and senimet. The freezing stopped for a few month and i went back to work as a single mum - it nearly killled me - now the freezing has started again always just on the hour when i am about to take my meds. it can last 5 mins or 2 hours - it severity can range from stumbling steps to full on walking stick action which with an active 1 year old is a nightmare - it happened at nursery yesterday and i have been awake all night worrying they will call social services! God i hate this so much - it is an illness that robs you of dignity, independence and basic human rights of passage - my little girl is 1 - i dread she will grow uo hating me for my illness and itty so hard to make things normal. I thought i would meet someone but who wants to date someone who freezes - i am beginning to hate myself.... any help,, advice or encouragement most needed x

You can only address the issue of freezing through your neurologist/parkinson's nurse. I'm sure many people can give you strategies to help you cope with it and get moving again, but ultimately, it must be a medication solution. I think they gave me ropinirole to stop freezing but that throws up a whole load more issues/side effects!

Would physiotherapy help?

You have it extra difficult being a single Mum, a working, single mum. Do you have supportive family members, as well as your Mother, who you can turn to?
I know independence is a key issue for all of us but there are times when you have to stop and cry for help. Will your cry be heard?

Where do you live? If was nearby - I would help you if I could - there must be people reading this who would say the same. Any parkinson's support groups near?

What is your job? I hate to say the dreaded 'B' word (benefits) but could you reduce hours? Perhaps work is your lifeline to normality as it was mine, but it adds to the stress levels something shocking!

You need someone 'real' to talk to but I don't know who to suggest - family member, GP, your boss, PD nurse, PD welfare worker, Citizen's advice?

I am thinking a lot about you and your predicament -I do hope someone can help you soon.

Lin
xx

Hi mariposa,
I'm sorry to hear that you're having such a tough time.

We have a new information sheet on Freezing in Parkinson's which you can find here: http://www.parkinsons.org.uk/default.aspx?page=10510

It does include some information on techniques to cope with freezing, including when it happens in public places.

Still, Lin is right. It is a good idea to speak to your specialist or Parkinson's nurse to see if maybe you need changes made to your medication.

I hope this helps.

Ezinda

That factsheet is very helpful and well worth reading.

My neuro recommended a laser pointer pen (couple of quid from ebay or pound shop) which you point at the ground in front of you; you get a lot of strange looks, but you only need to switch it on during stop/start manoevers.

It occurs to me that frequent freezing is a possible justification for stopping work and going onto Disability benefit. Wonder if the Neurologist has discussed this with you.

I told everyone about my freezing. Now I have the problem where everyone hangs onto the back of my jumper or feel the need to stand in front of me.

When everyone bellows "big step" or "sit down" or "left right" or "heel toe" all at the same time it can exacerbate the problem.

I think the info sheet should be updated to include bouts of over helpfulness.

STOP: calm yourself
TELL: everyone around you to shut up and keep your way lest they will be flattened
WAVE: your walking stick round your head
THINK: what do you want to do?
PLAN: how are you going to do it?
DO: complete the task or movement.

By eck, eck - you've got it just right. Sometimes I feel quite rude -if I see a clear path to the way out -I'm off! Never mind goodbyes or thank-you's! If my path is clear and I think I can get moving - you don't see me for dust!
Such relief to manage a doorway!

Lin
x

Oh! I forgot to ask. How do you manage a walking stick? If my brain isn't sending right message to my legs - there's no way a walking stick will obey. I end up falling over it.

Lin
x

Hi mariposa,

I too am so sorry to hear that you’re going through such a tough time. Unfortunately I can’t offer much help in what regards how to handle freezing as have no experience with it yet. But thought I might anyway comment on what I can in case you might find any of it helpful.

Firstly, in what regards your concern that your little daughter might grow up hating you because of PD, I thought I’d just say that my experience as a father of 2 (a bit older) kids gives me some hope that you may be up for a good surprise. Clearly, until she’ll be 8 to 10 years old, I find it really hard to believe that she would hate you for something like that. Until that age, kids seem to be so amazingly attached to their parents that I can’t imagine something like PD changing that. After that age, kids's perspectives tends to change and parents go from super hero to super villain. But then again, I’m not sure PD will make a difference to that. Any parent is up for a challenging time at that period anyway. Not sure all the kids are the same, of course. But mine (and those of my friends) seem to go along those lines.

Secondly, I’m just guessing that as single working mum of a 1-year old, you’re probably not getting too much free time for yourself. If you can manage to find a couple of hours every week, I’d think that a bit of regular sport (plus any other activity you might enjoy doing) might be very beneficial - it probably very tough to be able to find the time, but if you can pull it off, I'd bet it's likely to be worth it.

All the best to you,

lfs

My freezing/stumbling/tripping is rapidly getting worse!! From 2pm onwards every day I can almost guarantee several episodes, where it is as though my shoelaces have been tied together, and I'll take a dozen, rapid, mini-steps and fall flat on my face. One time I got caught unprepared with a tray of food in my hands, which went flying (that was upsetting for me and my kids).

I'm going to see my nurse/neuro soon, but in the meantime can anyone tell me; is it a sign of medication overdose, underdose, or is it just my body telling me to get my meds reviewed??