My friend's head falls forward permanently - PSP Association

PSP Association

9,176 members11,302 posts

My friend's head falls forward permanently

MyLittleMate profile image
14 Replies

My friend is 63 and was finally diagnosed 2 years ago. She has no family but between 4 friends we take it in turns to look after her. She can walk but falls constantly. . Her falls are because she loses balance. But she also can't see where she is going because she doesn't lift her head. We finally have an OT who is no expert in PSP but has taken Lynn on to help in every way she can to remain living on her own. I'm reaching out for her so any help please. I have loads of questions.

Written by
MyLittleMate profile image
MyLittleMate
To view profiles and participate in discussions please or .
14 Replies
Cinnylou profile image
Cinnylou

She is blessed to have friends willing to step up to the plate and help her. This is no disease to try to battle alone. You’ll find lots of good information if you look through previous posts. First and foremost, if she hasn’t already, she should designate someone as power of attorney to make decisions for her when she is unable to. You never know when a decline is coming or how incapacitated it will leave her. Find out now how she feels about various things like should she get a feeding tube if she eventually can’t swallow. Or if she wants to go to a nursing home when she gets really bad. Not pleasant conversations, but best to find out her wishes now while she can still communicate. My husband lost his speech fairly early, so I speak from my own experience.

It’s a hard road being a caregiver, but even harder for the loved one needing care. Take one day at a time…don’t be too hard on yourself when you think you’re a failure at caregiving…and try to fill the moments you can with love and laughter and good memories.

BBW85 profile image
BBW85 in reply to Cinnylou

Yes indeed, and when those irritable comments come out, unintentionally, don't be hard on yourself the strain does things to you.

Mariawatters profile image
Mariawatters

What an amazing person you are to help your friend . Total in awe of you 😍

MyLittleMate profile image
MyLittleMate in reply to Mariawatters

I segmenting of feet turning in and pain in the foot?. LL has this. She says the pain is in her toe. Where was your pain?

Hi MyLittleMate!

I'm sorry PSP/CBD/ etc. has entered your environment .

The attitude of your group of friends towards the patient together with the attitude that I see every day in this chat fills me with hope in the humans. ¡¡Chapeau!!

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you, the patient and the team of friends I am sending our experiences and our informations by the private mail of this chat hoping are going to be useful for you and friends.

Hug and luck.

Luis

AJK2001 profile image
AJK2001

What a lucky lady to have such good friends to support her. Agree with Cinnylou important for her to appoint Power of Attorney for both health & finance and make clear her wishes for her care. Difficult conversations which I must admit when our Community Matron started them I thought it was too early but Mum was OK with it and it helped so much later on, when locum GPs would have admitted her to hospital if it hadn't been her wishes were so clearly stated. Mum lived in sheltered accomodation where someone was on site 24/7, which was a godsend when she fell. I hope your friend is somewhere similar or has a reliable falls alarm, With plenty of carers visits (4 a day) and myself visiting everyday Mum was able to stay at home, but I must admit it took alot of hardwork & determination.Does your friend have problems with her eye movements? This could be why she has her head down when walking, it's the only way she can see her feet. Poor eye movement leading to the person moving their head to see things and double vision (because the eyes don't move together) are common problems with PSP.

Ask away with your questions, you will normally find someone else has experienced the same, even though a Dr may tell you it's not a PSP thing.

knittingannie profile image
knittingannie

Physio could provide a neck support but you would need to push for it in Rochdale borough as not much forthcoming and it might help pre ent it becoming excessive Had anyone experience of continuing healthcare team in Rochdale borough (covers middleton and heywood also )

For the neck my loved one is doing botox to help where the muscles aren't strong enough to keep neck up on place. And like everyone has mentioned find other wishes for the future of her life span and beyond that. Someone will need to be power of attorney to help her make sure she can live her life as she chooses or a social worker whom won't know her will make the decisions for her. Best wishes on your journey. But don't hesitate to ask questions here everyone is so supportive.

MyLittleMate profile image
MyLittleMate in reply to Stephanielayell82

Botox. seems to be used for an awful lot of things!! I thought it was just aa beauty aid!

MyLittleMate profile image
MyLittleMate

Thank you I dealt with Power of attorney some time back! Thanks for all your copious information. Trying slowly to read through them all. Please accept this as a Thank you to all that have replied!!

LFG3 profile image
LFG3

Hello,The dropped head syndrome is caused by weakness in the neck extensor muscles. It can occur in neuromuscular disorders. You might try using a neck support (or two) turned backwards while she is sitting. The kind they use on airplanes for sleeping. Another option is look into getting one of those white soft neck supports often used after neck surgery.

MyLittleMate profile image
MyLittleMate in reply to LFG3

Thank you for this. Does it also explain her foots akward angle? What is your knowledge of use of Botox?

LFG3 profile image
LFG3 in reply to MyLittleMate

HelloI believe with PSP there is weakness in some muscles and contractures of other muscles. The foot angle may be caused by this. I don't have any knowledge about Botox.

Others may be able to give you info on this. If the foot angle is causing falls, it may be time to use a wheelchair. Falls are a serious hazard to PSP patients and preventing them is the best way to preserve health. So many injuries, broken bones, trips to the ER, surgery and hospitalizations. All can be avoided if you prevent the falls. With the head drop and foot angle problem, a wheelchair or medical transport chair may be your next step.

MyLittleMate profile image
MyLittleMate

The problem all along with my friend is she has mental capacity. So all along she has resisted the inevitable until either made to do it by an authoritarian or finally as just happened , unbelievably a fall landed her in hospital where she was diagnosed as having self abused.

Despite this she refused to follow our advice to now be taken care of in the same care home as her mother of 95 (her only relative) who I had moved to be right next door to Lynn's one bedroom flat.

As the NHS authorities deemed her to have mental capacity they followed her wish and organised 24 hour care in her one bed flat. This has all happened so fast. I was on holiday for a week and another friend couldn't fight Lynn and the authorities. I said we had to go with it. Yet again following Lynn's resistance to wanting to face reality.

We have therefore decided to withdraw. (Lynn is at least cared for now) I have told Lynn we are not DOING anything other than visit her like a friend. Everything else she, via the carers or the authorities, will need to be controlled by her. However, we will help her move to the care home next door for her to have some quality of life that we feel would be better for her. Her flat which she rents with redundancy money that will run out is one bedroom only and needs rearranging completely into something quite different.

You may also like...

Head protection for falls?

Hi everyone, Mum has had a nasty fall over night, she had got up to check that the lights were out...

Balance and Falling Problems

said she couldn't see her because of her being a risk to the facility. Also she had to be taken out...

Eating is optional for my sister

and she said yes. So, I fed her the 10 bites she would eat and the water and milk. She can barely...

Falls

vulnerable points are but she still falling bad and is hurting herself My daughter is her main...

Sending warm wishes to my friends

Grief is not linear, and I have days of missing her deeply, but never once have I regretted the...