PSP Association
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Cbd

Hi, please help...our mum has been diagnosed with this awful illness, she has almost lost all her mobility now, can’t sleep, agitated is confused and seeing strange things, constantly needing to wee, where are we at this horrible disease, help please xxx

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Hi, I am sorry to hear of your mom. This site offers all kinds of help, but you may need to be a bit more specific.

1) What country do you live in?

2) Does she live at home with you or in a care facility?

3) What does her Neurologist say?

4) How old is she?

5) Presently, what are you specifically asking and need help with ?

I would take whatever time you have to get acquainted with this site.

At the top you will see a SEARCH BAR, "Search PSP Association". Write in a topic, perhaps "CBD", and past shares will come up.

I live in the USA, Los Angeles, CA. I am a 77 year old mom who I lost my 55 year old son to PSP last May 4, 2017.

There are many on this site whose loved ones suffer from cbd.

Perhaps you can add more to your initial introduction or write a new post.

Blessings...............

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Hi thank you for your message 😄

We are in the Uk

Been living at home until past week then had a fall and went to hospital for check up and have kept her in, now want her in a nursing home to rehabilitate for a few weeks.

Diagnosed last month although had symptoms for last three years

Only seen neurologist twice once for scan then got a diagnosis.

We would like to know what stage we are roughly, we understand everybody is different but has anyone had these symptoms and it was final stage, we are all very scared xx

So sorry for you loss 😢😢😢 xxxx

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Hello Codd Family; Welcome to this site!

I'm sorry about your mum's diagnosis. I'm guessing you're in the uk? I am a spouse of a CBD patient.

I you've received the diagnosis from a tertiary neurologist or movement disorder specialist he or she is best able to tell you how far along your mum is - though they may decline to speculate as the progress of symptoms seems to vary so much patient to patient!

When I first started to ask what was wrong with my husband because he had lost his speech, no-one came up with CBD (for years) because he was mobile, seemed well overall and loss of communication is seen as a later stage symptom. But eventually orher symptoms caught up and CBD it was.

Some CBD patients have cognitive loss and even fronto-temporal symptoms like you're describing - some are mentally intact until they die. Again, this doesnt help tell you where in the progress of the illness your mum is

There is no cure for the disease but there are lots of ways to address all the symptoms. If it were me, I'd want to address the agitation and fear first. Hopefully your mum's doctor can try antidepressants or appropriate meds to help her achieve calm. There are solutions to most of the symptoms - too many to list here - but if you type a question or topic inro the search window, you'll start to get some info.

Also, as Margarita suggests, ask the.community a question about a specific symptom and you should get a response!

And if you just want to rant, that's good too! Its scary at first, but you have support here and you can get through it, and help your mum through to the end as kindly as possible.

So keep in touch, and ask away!

Anne G.

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Hi

Thank you for the message 😀

Mum is currently on anti depressants and recently upped dose to help with anxiety and agitation.

She is constantly stressed still though and can hardly move her body around anymore.

We are just starting to get outside help now from Ot’s etc since her fall, we made her go get checked out as ambulance guys were going to let her stay home.

We as a family have been looking after her but she’s 24hour now seen as she’s up all night too now.

Since diagnosis we have read up on it and that’s all we know from the internet, bad I know...

Such a hard time for families coping with this 😢

Wishing your family all the best 😘😘 x

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Thanks for the kind wishes Codd Family :-)

In the midst of all the sorting out what clinical needs your mum has, do take time to think of things she may enjoy that would help soothe her and demonstrate the persistence of your love and care for her (,,,and that OTs, RNs, etc DON'T provide -) e.g. a back or leg or foot massage; lovely music; something beautiful in her room like fresh flowers or some art she's always loved; more photos of people who love her; Hugs and kisses. When we're anxious and trying to be efficient and focused on clinical, some of that "soft" stuff goes unheeded....

Another question I have is: Does your mum know what is happening to her? Was she cognitive when the diagnosis was received and was she given an explanation that she could understand? Depending on how fast the onset and diagnosis, some patients may never actually know and understand what is happening to them. Some family members may believe that withholding facts is "kinder" to the patient.??

Best wishes as you cope with this struggle!

Anne G.

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Hi, Thank you for advice 😀

We found out last month and had never heard of it until then.

We are aware of all the symptoms and how they differ greatly to one person to the next.

Mum said she didn’t want to know but then she has started to ask questions now and then.

I answer them truthfully but her anxiety is bad so I say things like there is medication for everything so don’t worry.

I hate seeing her get worked up 🙁🙁

As this progresses I not sure what we will say, we have family meetings and we are a big close family but it’s hard on everyone as she has been our rock and an amazing mum to us all.

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Welcome to this site.

I found it a life saver as there is always someone who has experienced your problem. It is so good to not feel alone when you are living a nightmare. We rant and rave, exchange tips for coping and often manage to find some humour !

I remember the feeling of shock. Its not good news and no-one can make it so. It is good that you are a close family and you can all pull together to make it as good as possible for your mother.

She needs to feel loved, as I'm sure she is.

There will still be good times. You will all survive this.

Love from Jean x

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Hi. We are in a similar position. Called twice. Basically not mobile anymore...not able to sleep at all...this is the worst thing ever for my mom. She's always believed sleep heals you but she can't heal now then. And anxiety through the roof. It's progressed so quickly...was basically almost "normal" in December. I think my mom has the rapidly progressive form...think it's called the Richardson type...and progressed to this in less than 6 months. I do believe a fall is a major set back. What I get angry about is the lack of support from Neuro. Not sure if they themselves are nervous as they can't help much. Anyway...thinking of you. Here for you. In fact right by your side. Lots of love. Xxx debs

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We hear you and are here for you on this journey!

Lack of sleep is exhausting and probably because your mum can't fathom what is happening to her. Have you tried 5HTP which is the precursor to serotonin, or soft gentle music? It must be a result of her fears, so she needs reassurance and no doubt, it would be helpful for you to get more help from neurologists. Maybe others may have suggestions for others to contact.

There are links here somewhere on conferences recently in the States and there may be info and contacts there. However, I think best help, knowledge and grassroots advice may come from people here on this site.

Hang in there! Listen to your gut instinct and fight for you mum's wellbeing. Don't be put off by neurologists with apparently little knowledge. Ask your questions and demand they find an answer if they don't know! It is an exhausting fight so don't forget to look after yourself! And keep assuring your mum you love her!

Big hug

Jen xxx

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Hi, sorry for your situation 😢

Our mum is very similar and now on sleeping tablets, it’s a long night for everyone 🙁

I think you are right about neuro’s, and they know what’s to come so easier to avoid the patient. Never heard of the Richardson type, will try to look into it but there is not much about cbd on the internet it’s mostly PSP.

Much love and strength to you 😘😘😘😘 xxxx

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Hi i have also been diagnosed with CBD though i think in earlier stages. Where in the UK are you? I am im Cornwall

Jo x

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Hi, sorry to hear your news 🙁🙁, we are in Plymouth xxx

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Hi Plymouth isn't that far away. I live in Mullion and come Plymouthoccasionally by train. Jo xxx

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No it’s not, it’s quite rare xxx

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?????

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Also theres someone who lives in Exeter who is on the forum . Think his name is george. Xxx

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Oh bless them, unless you are on this site it seems cbd only exists in America xx

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Hi Codd family, I wrote a long screed this morning, only to lose it cos the phone rang! So will try and make this shorter!

My husband was diagnosed with CBD 3 months before he died after I had looked everywhere for a reason for his sudden old age.

If you long press my emoji beside my name you will be able access all my posts and replies. You may have found how this site works already.

Ours was a short journey because of late diagnosis, and was traumatic, but in truth, there were subtle changes up to 5 years beforehand.

He had high blood pressure, diabetes, a heart problem that was improved with a pacemaker, severe back pain, stiff limbs, poor gait leading to Parkinson's diagnosis, an MRI which showed a benign? tumour, and frontal temporal and mid-brain gaps, and a dry skin problem we called psoriasis. His voice became quiet and he complained of not hearing or seeing well. There was minimal dementia until near the end when he had pneumonia.

No two people seem to have similar journeys, all different symptoms in different sequence. It is a hard road to travel but with support from family and this site you can get through this!

Give your mum lots of love and hugs and assurances that you will be there for the duration, however long it takes. Give her simple answers if she has questions. Get carers in if at home and contacts with Hospice if possible so that she gets used to others looking after her and being away in other company during the day, so that she understands this need early on. You will also need this "down time" to catch your breath, do necessary things, or have family conferences as time goes on.

Talk to her and the family regarding will, power of attornies if these are not in place. I find it easy to talk about these things having already gone through the process, but you may find it more difficult. It is not easy to broach but is necessary while your mum has good state of mind. Later is much harder!

Think outside the square for ways to communicate if speech becomes difficult. Hugs work well! As do hand signals and hand squeezes, and thumbs up or down. Smile as best you can.

Stay with this site and tell us how your mum is, ask your questions and shout out your frustrations and grief. We will be here for you, and we know how it is!

Big hugs

Jen xxx

from New Zealand

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Codd family,

I am so sorry for this diagnosis for your mom. I lost my wife and my kids lost their mom last weekend. CBD is a cruel disease and appears to progress rapidly.(any speed is too rapid).

You have come to an excellent forum for support and information. Especially for UK residents and information to manage what appears to be a very confusing health system.

The most important thing is to love her as much as possible while she is with you and make her as comfortable as possible.

Wishing you wisdom on how best to deal with this disease,

Bobby

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😢😢😢😢 so sorry for you, it’s a horrid disease ☹️☹️, thank you for your advice xxxx we will do our best xx

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Hi i have sent you a message lower down in replies. Jo x

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????Xxx

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Hi i have 3 messages i think from you but cant actually see them in entirety ?.Jo xxx

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Hi, I didn’t message you, just wrote on here xx

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Didn’t receive one from you either xxx

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Omg. Let me know if you receive this okay Jo xxx

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