This is my first post. I have occasionally spent time reading other people’s posts, but would then stop myself because sometimes ignorance is bliss. Even for just a fraction of time.
My mum turned 65 last month and if you knew her you’d know that she is a young 65. She always cared about her appearance and would regularly get her nails and hair done and making sure she looked nice in her clothes.
In March 2019 my mum’s symptoms began and they haven’t stopped. She has constant pressure in her head that causes dizziness and her eyes have Nystagmus where they move side to side on their own. She is sensitive to light and wears multiple glasses to combat this, pain in her right foot and her speech is slurred. After many scans and appointments she was diagnosed with CBD 2 days ago, although we were told that they suspected she had it in March 2020, just before lockdown.
My mum is amazing. She comes over to my house 3 times a week to use my peloton bike for an hour so she can keep active, and also goes for walks with my dad the other days. Everything is an effort though and she sleeps a lot to try and restore her energy.
At her diagnosis appointment the professor told her that she has years, not decades and that eventually she will not be able to speak so she should get all her affairs in order.
How soon before she is unable to speak? We were told that she would understand everything, just would not be able to communicate that.
Is there anything that we can use like ‘pecs’ to help her to communicate with us when that time comes?
Thanks in advance x
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Opals
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So sorry to hear your news. It's impossible to say how long before she cannot speak. This disease progresses in really different ways and pace. Being familiar with possible symptoms can help you to plan and prepare. But I've also found that when I've got something new sorted the disease has progressed too fast to make use and then other symptoms have stayed very stable. My mum's mobility deteriorated really quickly but her speech hasn't changed much.
Hello Messier, thank you for your post. I briefly looked at your profile. Where in the UK are you and your mum based? Has she had a diagnosis yet? I looked at you original post and to answer your question about leg compression machines, albeit a year late, I have got this for my mum as her legs are so swollen. This has helped her dramatically and she uses it regularly and says she feels so much better for having it.
Although we have known that CBD was the likely cause of mum’s illness, now the diagnosis is confirmed, I just can’t imagine her getting worse and potentially not being able to speak to us. I’m scared and just want to help her as much as possible.
Losing the ability to speak was one of the things which scared me most when my Mum was diagnosed with PSP. As with many things it crept up on us, sometimes it was more Mum couldn't find the right word, then her voice got quieter & I could no longer hear her unless facing her & quite close, her annouciation wasn't good always but she never completely lost her voice, though she might only have said the odd word. I often had to act as her voice when other people were around & I could understand Mum much better than others as we were tuned into each others thought processes, so yes it was awful and our communication was limited but there was still a connection between us.
We used a portable microphone when quietness was the issue, it was like a telephonists head set with a battery pack attached. This enabled us to talk in the car & when I was pushing Mum in the wheelchair. I know people have made picture books for people to point at.
Look at the latest edition of PSPA magazine, downloadable from the PSPA website, there is an article there about a lady banking her voice. I don't know how it is used once it's banked but it's worth investigating.
Thank you so much for your reply. I just can’t fathom her getting worse, or most likely, I just don’t want to contemplate it. All in all she is good. She is able to walk and drive even, the most debilitating symptom is the dizziness and pressure in her head. As I said, she rides on the Peloton 3 times a week and then walks on the other days. I can understand her completely. She is much slower and sometimes jumbles up the words and says the wrong thing, but this just tends to be quite comical at times.
Her legs are very swollen but using the leg compression machine has helped. She sleeps regularly and spends most of her time watching boxsets.
From what we can establish, she is very much in the early phase of this illness.
Our plans as a family are to return to Australia, where we originally lived. This was supposed to be in 3 years time but now we are unsure how she will be in 3 years and whether it will even be possible.
Any insight would be greatly appreciated and I understand that everyone is different so it may not be the same for her as it is for someone else.
I will be looking into voice banking as an option. Thank you for your experience and hope that your mother is well all things considered
I am so sorry to hear about your amazing Mum and welcome to this site that no one wants to have a need for. It is so good that you have posted because people on this site will be able to give you more support and suggestions and answers than any professionals will ever be able to give you and all will understand where you are coming from, even if it is when you feel that you have to unload. There are no time frames. Everyone is different, but there are stages. In the UK the PSP Association have great leaflets on CBD that I found very useful especially when dealing with other people involved in my husband's well being. You will need to live one day at a time from now on but I know there are people who use this site from Australia so it might be worth reaching out to them if you still wish to return there. Big hugs AliBee x
Thank you so much AliBee1. It’s comforting to know there are people out there that understand and I’m sorry to hear that you and your husband are also going through this. I will definitely reach out and visit the PSP association. Big hugs to you too, Opals x
Hi Opals sorry to hear about your Mum, my wife who is 75 has CBS which is Cortico Basel Syndrome which whenever I said to the Neurologist it is CBD he said no it is CBS very confusing. She started to have problems in about 2015 in 2016 she had an MRI scan which indicated severe shrinkage in the left side of her brain. She has also had a CT scan and a SPEC scan which all indicated the same thing she can no longer articulate anything or write anything, but she still can walk ok but is now having problems on her right side ie putting shoes on or gloves. She cannot instigate anything so most of the time she just follows me out in the garden to do a bit of weeding or watches television. I have as a consequence of reading about PSPA asked to see another Neurologist who specialises in CBD there are two who work in the Southampton Hospitals I was pointed in there direction by a lady on the PSPA help desk. After a video link and a telephone conversation we will now have a face to face in March but I do not think there is much to be done but just take each day as it comes.
I have not really found anything to help only second guessing what she is trying to say, most times it works but not always.
Stay strong and keep reading the posts as it sometimes helps.
I was just reading a guide to CBD and came across a paragraph that may help you from CurePSP - ‘What are the various subtypes of CBD? - The microscopic brain abnormalities of CBD can affect different parts of the brain, producing different sets of outward symptoms in different people. The first variant to be described in the medical literature is called corticobasal syndrome and is the most common. It affects about half of all people with CBD and is the archetype of CBD’.
So it appears that it is another subtype of CBD and from what I understand, CBD is a subtype of PSP. All vert confusing and not everyone has the same symptoms.
I’m so sorry to hear about your wife and also what you are having to go through to. I hope someone is looking out for you, just as you are for your wife.
I’m trying my hardest to check in with my Dad who is definitely finding it tough too.
I figure my mum is at the very early stages as she still has all her speech and mobility, albeit , it is different to how she was. Her walking isn’t great as she gets very dizzy and loses her balance.
We live in Essex and my mum was referred to Addenbrooks hospital in Cambridge where they have a specialist department that deals specifically with CBD/PSP. She has also been attending the hospital for a clinical trial, but not that she has been officially diagnosed, she is likely to stop the study as she will be starting medication to try and reduce her dizziness.
All we are doing now is trying to prolong her quality of life for as long as possible. I saw her this afternoon and she seemed happy and contented and will come over to use my exercise bike tomorrow.
Is your wife able to communicate in other ways? Could she respond to yes by raising her thumb, and maybe tapping her palm down for a no? That would just leave you asking her closed questions though and must be extremely hard.
I’m so sorry you are going though this. I’m dreading this journey.
As everyone has said, it is different for each person but you probably want to hear examples anyway. My mother’s first symptom of PSP/CBD was slow speech in 2013. It is only this year, year 7 (age 81) that she is down to maybe 5 words on a good day, for example, ‘good morning,’ and occasionally, ‘no,’ or ‘bye.’ She has yes-no confusion so even having her point to a yes/no sign is unreliable. We have to guess a lot. We have another sheet with pictures of her bed, the toilet, the TV, outdoors, etc that she can point to where she wants to go—that works pretty well. This year she is also in a wheelchair, after using a walker for year 5 and 6. She has kept her sunny disposition and still has a lot to enjoy in life. We make sure she has a good haircut and is dressed nicely with earrings on, lipstick, eyebrows, so she feels like herself and has a sense of dignity. Though a few pajama days are allowed!
I do occasionally have anxieties about the future but reassure myself that we’ll be able to manage, and I count our blessings because things could definitely be worse. It is important though to have the legal paperwork in place so that your mother’s wishes for her care as well for her estate are known and can be carried out.
Exercise is one of the best things you can do to help maintain quality of life. I hope your mother has slow progression which makes adjusting to changes a bit easier.
Thank you so much for your post, and I’m sorry for my delay in replying. I really appreciate your insight and experience with this illness. I suppose what I have gained for reading others responses, is that we can’t plan for every eventuality as we have no idea what she will be like in months/years along this journey. I do hope she retains her sunny disposition and still enjoys that same things that she always has. I’ve noticed that she had changed a little already as she would rather stay at home now, and before, she always loved to go out for various activities.
Wishing you and your mother all the best. Thank you again x
I understand this is a tough journey for everyone involved, sometimes more stressful and emotional to the caregivers than the patients themselves. I asked the same question when mom's symptoms started to get worse, to doctors and other people whom walked this path, and unfortunately, the best everyone could tell you is it varies from person to person.
We have seen three different neurologists (2 of them being movement disorder specialists) and they all told us that my mom is in the middle stage, very vague, but here is a general picture of her conditions right now so you can compare and know what to expect:
1. needs walking aids, gait belt, someone behind her all time if possible (but can still stand for showers with grab bars mounted)
2. falls backwards/sideways at least 2-3 times a week
3. significantly slurred speech
4. swallowing difficulty (needs thickened liquid and 80% pureed food)
5. fingers and toes curled up (needs feeding help)
6. body rigidity, needs help of getting out of bed, sit to stand, etc
The main reason of her still being in the "middle" stage is the fact she can still walk, even very short distance, and encourage your mom to maintain whatever independency in her daily living with enough safety measures.
Now all this started to progress rapidly starting March 2020, before that, my mom was fine with some "clumsiness" in her walking, falls 3-4 per year. She was still speaking clearly in July 2020, later in August, I needed a lot of guessing to understand her. Fast forward to now, early November, she is barely speaking at all, complaining about "tight throat" and hard to come up with a full sentence.
From what I learned, my mom is on the "fast track" of this horrible disease, her symptoms seem to develop or worsen in a monthly interval.
Best wish to you, your family, and your mother, may her maintain the quality of life for as long as possible.
Thank you so much for taking the time to respond to my post, and in such detail explaining what your mother has been going through. It has really helped to have some understanding of other’s experiences and I’m very sorry that she and you, are having to go through this.
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