Freezing


#1
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

#2
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

#3
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

#4
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.

#5
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.

#6
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.

#7
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

#8
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

#9
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

#10
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??

#11
I've had enough near-catastrophic falls lately - my Neuro has offered the option to try "sub-cutaneous apomorphine. It's a dopamine agonist (a DA previously made me hyper-everything; some really damaging side-effects) but I understand the different 'flavours' of DA can affect us differently.

Anyone out there with experience of sub-cutaneous apomorphine???

#12
i dont have freezing (yet) and i am not giving advice, but i am very interested in the cause which i believe to be sensory overload
http://www.prd-journal.com/article/S1353-8020%2808%2900251-4/abstract
i was wondering if anyone had tried just shutting one eye and seeing if the reduction in competing signals reduced the freezing? its a bit rude perhaps to ask fellow pwp to be a guinea pig but i would be very grateful if someone would give it a go. the puk sheet already suggests closing your eyes and taking a step but i suspect monocular vision mightbe safer!
t

#13
Dear Turnip,

I am not at all sure that this will make much sense, but I can but try.

For some time prior to my pd dx in 2009, I had an inclination to close or at least squint my left eye.At the time I had no experience of freezing, it was more to do with a Q of balance. I had no rational expanation for doing so - it was simply instictive, and it did seem to help with the spinning sensation. I do not have the same inclination or experience when it comes to freezing, and in neither instance do I think it would have been a good idea to close both eyes. I am pretty sure that I would simply have fallen over.

Hovever, a very recent diagnosis of a Bell's Palsy ( caught early as I was aware of the symptoms, since both my parents had the same thing, although I understand it is not thought to be inherited,) and therefore expected to resolve within a couple of weeks has, as one of the symptoms a "droopy " and weepy left eye, which has to be taped up at night.

I will let you know if this enforced closure of one eye is of any help to the problem of pd freezing. Hovewever,, I would not recommend it as primary treatment


.

#14
thank you AB

the theory goes something like this

the thalamus is the Heathrow of the brain, signals come in, are aligned, cross-referenced, impulses go out. An important fast-cycling loop for adjusting movement takes place - perceptions - adjstments to movements - perception. that loop can freeze (it is by the way sub-conccious). a lack of dopamine may cause the alignment of different perceptions (eg from the left eye and the right eye) to not be processed in time to catch the adjustment train which gets stuck in the station. by reducing the input to one eye, much less processing needs to be done so the visual processing can fit into the adjustment loop's timescale.
I believe a similar thing has happened to people with two hearing aids - the brain has trouble synchronising the two inputs and so the control of the tongue and mouth is affected causing slurring of speech.

it will be interesting to see how theory matches to reality.
thanks again

#15

When I freeze usually in our small kitchen I need to hold on to the worktop as my whole body quivers and shakes.
Mostly in tight situations,I hate going to busy places and need to see a way out or I’ve had it.
I still manage to support my football team, as I go in early and have my carer with me,and wait till the crowds go out before I venture.
I do struggle but my team is top of the league and I cannot give up.
I get dropped off 20feet from my turnstyle so I’m fine
It’s the shaking all over when I freeze that’s my biggest problem ,my tremor has receded with meds.
Falling is a terror though