hi l am 77 years young and l was diagnosed originally in 2022 with Gait Ignition failure ( eg freezing and falling ) a form of Parkinson’s, as condition worsened eventually paid privately for a diagnosis. Consultant had done research into Parkinson’s and PSP CBD and l was told l had PSP in August 2024 2 years of wasted time but prognosis would still be the same. To date l am still fairly active but the condition is deteriorating and activities are getting more difficult, I try to keep upbeat and positive but have my down and frustrating days.
l have an amazing group of friends whom help me to still go on holiday with help of mobility aids ie walking stick, stroller and now a folding mobility scooter. Just had to complete a driving assessment forms for DVLA as l informed them as advised of the condition , so awaiting an appointment fingers crossed l shall pass, but hey ho-another bridge to cross,
l try to go to physio Pilates at my local hub also arm chair yoga both once a week. I used to walk a lot but over the past month or so am finding increasingly difficult. I am trying so very hard to keep up beat but am struggling as so used to being active. Cannot do swimming anymore as co ordination non existent in the pool even frightened the life guard ha ha,
Is there anybody who can advise how they cope with the freezing gait l have tried singing, counting, marching, stepping side to side but nothing seems to help. It is frustrating and anxious time yptrying cross a road or getting stopped in lift doorways and other obstacles etc
Sorry to waffle but that’s my story to date l know others are at a different stage but interesting to see how individuals cope
Written by
Grandmadippy
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Hi there and Welcome to this marvellous forum. You will gain a greater insight into the disease from this site than elsewhere as this community are a source of knowledge and reading the posts is so informative.
As a background I am the main carer for a gentleman in the Uk who has PSP-diagnosed March 2023 after three plus years of mis-diagnosis. He is single ,age 72 and there is no other family to assist.
The freezing has only become evident to me in the last year so basically a year after diagnosis. The problem is that he knows he should move right or left leg but it is the build up of tau proteins in the part of the brain that controls movement that prevent the movement so sadly there is no way to overcome this. Like you my relative had been incredibly active until 5 years ago.
The only advice I can offer is to keep as positive an attitude as possible and use your friends to assist you. Also make sure you appoint a trusted relative or friend as a lasting power of attorney for you . We took this out in 2021 and it has become invaluable as the condition has progressed .
The PSP association in the Uk is a fantastic support network so give them a call -they are an incredible source of knowledge on this very rare condition which very few medics have encountered.
Hi there and well done for joining this forum, I hope you find it helpful.
It sounds to me like you have the variant
PSP-Pure Akinesia with Gait Freezing (PSP-PAGF):
- Characterized by severe difficulty in initiating movement, particularly walking, without significant tremor or rigidity. Patients experience frequent freezing of gait.
My husband had PSP-Frontal so I have more experience with behavioural symptoms and less experience with severe gait freeze, however at different points in time we experienced it and tried the techniques you already mentioned.
At early stages, co-careldopa (Sinemet) had a great effect for my husband and made his movements and speech fluent for 4 hours at a time. Later on we had some success with floor strips (as advised by Parkinson’s UK) - it would stop my husband from getting stuck in the doorways at home - but harder when you’re out and about.
The Ustep 2 walker (weighted Neuro walker) was great for my husband and I wish we’d got it earlier. These can be fitted with audio queue (like a metronome?) and a “laser guide” that will project a line in front of you - I don’t know if it would work for you, depending on sight and eye movements, but perhaps you could try it. Have you asked an occupational therapist or physiotherapist about this kind of aides?
The other thing that made a huge difference to my husband was regular sessions with a (private) neurophysio. We were lucky to find one - and when she retired - a second one! They were both very knowledgeable and experienced with PSP - and were local enough to do home visits. This helped my husband stay mobile far longer than he otherwise would, and he kept learning new exercises and techniques to overcome whatever symptoms he struggled with. Worth every penny.
Good luck with your driving assessment. My husband passed his, which he was very happy about, and it gave him more time to prepare for the inevitable time when he had to stop. Do consider stopping before you have to!
If you don’t mind sharing what part of UK you live in, it might be easier for us to support you.
I'm on the Herts/Essex border so not very close, but there are others on the forum that can give you local recommendations. I remembered one more thing. The Neurophysio recommended a mobile app called "Clock yourself". Imagine yourself standing in the middle of a clock face. When the app says "3" you move your right foot to the "3" position and back to the centre. You keep moving your right or left foot to the number that the app is calling out.
There are different speed and difficulty settings - eg it could call out "May" or "25" instead of 5 to challenge your brain further. The main thing is it gives plenty of practice to the brain-body connections. The more you use those connections the more likely the brain is to be able to maintain (or recreate) the neural pathways (neuro plasticity). It's a paid for app but hopefully useful. Xx
I can only give the insight of what we tried with my Mum, she went through a phase of freezing. Initially she was able to move herself eventually using some of the techniques that you appear to have already tried.
Mums on Sinemet which helps slightly but as her illness has progressed (PSP and CBD - so slightly different to yours) the freezing got worse and less able to get herself moving without me tapping on the limb that she needed to move. I don’t know if you have someone who lives with you? Initially Mum lived in an extra care flat which mean the warden could help when she froze and couldn’t get moving. But after two years she had to move to a nursing home as the falls became every time she tried to stand and move,
Mum tries so hard to be positive but she was diagnosed at 67, and has struggled with not having a retirement or any of the plans she wanted to do such as travelling as at diagnosis she was already using a walker and couldn’t do most things on her own. Mum smokes and even with all her difficulties she still has a couple a day, which she finds helps her mood (not suggesting you take up smoking) but is there something simple that you find gives you pleasure?
Interestingly my Mum gave up driving before we knew she was ill as she didn’t have the confidence anymore - I do wonder if she already had vision and coordination issues at that point.
As postie mentioned make sure you have your wishes recorded as what you want in the future as this is important.
Sounds like you have some great friends which is a blessing.
Hi, I too am a sufferer; I’ve found most on this site are carers. Unfortunately my PSP came after a stroke so I didn’t start from scratch. I cannot walk unaided and need a carer or family member on one side and a quad stick on the other, but do recall freezing when I just needed the stick, but it obviously can’t have got to your stage because I could overcome it. It’s strange thought, isn’t it? Sorry I can’t be of any help but just wanted to say hello
thank you sorry that you had a stroke and wish you all the best. It’s not a nice condition and not many doctors are aware although now have a designated GP so hopefully moving forward more aware
HELLO GRANDMA, I am so impressed with ur action and progress. And doing best for urself!
I am 82 M, diag PSP 7 yrs ago and still able/active, but less so as the disease takes more grip. It seems the later in life it strikes the slower development, and also theres about 8 variants all with different development rates. Reckon I am a slow trajectory! Exercise seems an important key to regular maintenance.
I have written a whole raft of notes from past 6 years with advice, info and suggestions, 7 pages. If uou like me to send happy to do so, but need ur personal amail, as too bulky for this platform. I am in Malvern..... you?
Very best wishes and P S P "Please Stay Positive". TimbowPSP
Thank you l would be very interested as l also have kept a journal of my events and progression into the PSP . I hope to live to see my youngest granddaughter reach 18 at least and she is 13 this year
my email l would rather not post as suggested on here is there another way
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Any advice please!
continuing care
Update on Dad 
FREEZING GAIT - DO YOU HAVE IT?
New to the site.
