My sister 59 yrs old diagnosed with CBD a ... - PSP Association

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My sister 59 yrs old diagnosed with CBD a yr ago

Summerdays6 profile image

Last New Years Eve we invited my sister and her husband over to play games and that is when we realized there was something terribly wrong with her. She was diagnosed with CBD soon after. The dementia part came first for her, a peculiar dementia because her memory is still sharp and she is happy, never moody. But, her thinking process has wilted to that of a three year old, maybe less. She is coming to a place in her journey where we can no longer leave her alone because if she falls she cant get up and she is becoming a danger to herself. She has no tremors but her gait has become awkward. She shows very little emotions, she shows no signs of pain, she can feed herself but has to be told to eat and can no longer fill her own plate. No medications work, they make her worse. We have tried diets, herbs, oils, detoxing the body, and nothing works. She can no longer dress herself and we now have to take her to the bathroom. It has been an extremely long year filled with stress and discouragement for us but she is happy 100% of the time. It is a blessing to spend time with her but at night such as right now at 1:48 am I am filled with grief knowing that she is no longer the sister I once knew. As bad as 2016 was I dont see 2017 getting any better but only worse. We take one day at a time and count each blessing. This disease has brought me closer to God and has humbled me. Teresa is on my mind 24 hrs a day 365 days a year. Let me end with this, There is a song that has become my "go to" song throughout this sad journey and I sing it often, the first and last verse of Amazing Grace.

8 Replies

Hi Summerdays6 . Welcome to this bittersweet site where you will find friends, answers and aplace where you can 'kick and scream' and we will all understand!

My husband died from what was considered to be CBD, but without any positive diagnosis even after death. He was given Parkinsons meds but they did nothing to help. Heart disease, diabetes and asthma could well have masked symptoms for some years.

Your sister sounds in a 'happy place' if such can be found. It is merciful that she is not fully aware of the change in her mental ability. Seems like her symptoms are more Altzeimers than Parkinsons., and my husband had traits of both too.

However it manifests itself, it is hardest for those who have to watch, wait, care for and determine what serms to be happening, often before medics are aware of what is going on as you see your sister at all times of day and night.

I found my husband best and brightest first thing in the morning. Your experience with your sister may be different. It seems to vary with everyone, but you will find info on this site of what to expect, not necessarily in order, or speed, but just what to look out for and where the crisis points are.

I have assumed you are helping to care for her, but you may not be. Get your brother in law to sign on to this site to as I think he will find it helpful. It will depend on his frame of mind too. There is help for him here as a carer and information on where to find help along the way.

I hope it helps you all! We are a close knit and sympathetic group with a walth of understanding among us of what you have to face.

Keeo in touch!

Big hug to you all. Stay strong!

Jen xxx

Please read my posts and you will see how close we are in our caregiving to our loved ones. I also live in constant fear of a debilitating fall and it is so difficult to accept the inevitable road that is ahead. I have promised myself that I must stop trying to get my Joe to recognize me and I have reacted too much in the past.

I really feel for you and I can only suggest you take time for yourself even if only an hour now and then. I have lost myself in this sad journey.

Warm wishes for peace to you and yours.

Hi Sumeerdays6,

Welcome to our site, I found it by accident but you know the saying 'he works in mysterious ways'. This is a place where you will get all the real information and help you cannot find anywhere else.

I am so sorry to hear about your sister, my mother in law also has CBD. As I am reading your post it is like I am reading my mother in laws story. Yes, the dimentia is exactly the same, she remembers everything but she is fixated on the strangest things like the remote for the TV, her meds had to be within reach and all the lights in the house had to be turned off and she cannot be left alone ever. If she does not see someone near her she becomes anxious and throws fits. SHe is scared.

We also had the same experience with my mother in law, we realized something was wrong a few years ago and started a battery of tests, nothing came up they were not looking for movements disorders. It wasnt until a bad fall resulted in a broken ankle which required surgery. Thats was when the downward spiral began. Her shuffling gait (noticed by a new doctor, her previous doctor like to give her pills instead of finding out what was wrong) was what prompted a movement specialt appointment, but her bad fall delayed that for about 6 months.

After keeping her home for a year with 24 hour care we have now had to place her in a home for her own safety. Her apartment was not safe for her and not wheelchair friendly. Her bathrooms in particular were too small to navigate safely. But, we still have carers her during the day, we take turns to go at night.

The emotional part is common, but I somehow have been able to make my mother in law smile, an awkward smile, but a smile none the less. No tremors, we havent had any as well. As for the medications, the movement specialist put her on a few pills to help with the stiffness and mobility but took them away after only 1 month, they did nothing. The only thing that is giviing her some peace now is that she is sleeping the night. At one point she didn't sleep more than 2 hours a DAY!!!! Once we regulated her sleeping medication she has become a little less anxious, but the anxiety was the worse part of this journey.

Now she is completley dependant on someone for everything other than eating, she eats well the food has to be moved on her plate and she cannot use her left hand, it is twisted up against her, another CD gift. She has difficulty swallowing liquids, even with thickners added fruit that bursts like grapes are not given to her anymore as well, they cause her to choke.

All told, I think the first symptom was about years ago when she complained about having something in her throught, she was not able to talk for long periods of time, that was CBD. After that was anxiety, falls and dizziness.

This is a hard road less travelled, I would suggest that you get some help to care for her. I dont know where you are form but there are different agencies in different countries that will provide assistance. Read through some of the posts, they are full of help. We are in Toronto Canada so we opened a file with the CCAC, at the time we didnt think we needed it but thank God they insisted.

I wish I would have found th is site earlier on, the support and guidance is incredible.



Skye04 profile image
Skye04 in reply to pzagy

Hi Ysanty..My sister has just been diagnosed with CBD and I have just joined this site and read your post regarding your sister but also see this was written two years apologies if your situation has changed.. We live an hour outside Toronto (Rockwood near Guelph) and was wondering how you got CCAC (now called something different) involved and did you have to pay for their services? Thanks for any info you can give...

Thank you for your post. Your sister has many of the same issues I have experienced with my mother. I feel the same as you in that this disease has humbled me. It has changed my way of thinking about things. I want to write a book...I want to volunteer for the good of mankind...I want to be a part of a greater cause. These things and happy memories are what are becoming more important to me now.

Summerday, I am so sorry for your sister and her family to have to go through it....Sometimes I don't know who to feel more sorry for, the patient or the carer.

My husband who has PSP, is like your sister in that he experiences no pain or fact apathy is a symptom of PSP which he started to display about a year into his diagnosis. I too have long nights before I sleep and then get up at around 7, making for 6 hour nights....and this is new since before the catheter, It was every 15 to 30 minutes only to wait for him for that long so he could pee.....and the walking to the bathroom became very dangerous! Last night B decided that he was peeing(?) with bears! I am sure this hallucination was from the movie the Revenent which he has watched (yet again) in the last couple of days. But then about 4:30 or so this morning he had to go "watch the nightly news".....When I asked why he said , "I'll show you" Well tired but curious, I gave in (and if I didn't he would do it on his own only to crash through what remaining uncrashed wall we might have) And I was right, no news...just a man hallucinating......I went to bed he watched for 20 minutes and I could hear him moving , I leapt up to save him, got him all the way from living room to the bed. His last stand before rest was once again ours, and back he flew into the corner of the chest of drawers with some part of his worse for the wear than he was when he first left the bed....I on the other hand.....

Well its 2:40 pm and I'm still in my pjs and I feel no need to go any further than to my family here on this site. I am too tired and I find you guys don't usually mind how I'm dressed! Lol

I am so glad to hear that you are finding solace in the spiritual ways of life. I too find my Lord to be a constant comfort (though there have been and will be many times I forget He is there) I pray that those times are few and far between for you and that you keep a constant focus on the Maker. My go-to song is, This World is Not My home.....Like Amazing Grace,the words are beautiful, meaningful and the song is not a dirge but is strong and light at the same time....

So I welcome you to our neck of the woods where you can scream cry get answers and give answers....we are all hear for you....And remember always to pray daily thanking your Lord for the amazing grace he has bestowed upon us because this world is not our home and greater things abound with and through our Lord !


Evening, and morning , and at noon, will I pray and cry aloud: and He shall hear my voice Psalm 55:17

For whatsoever things were written aforetime were written for our learning that we through patience and comfort of the scriptures might have hope Romans 15:4

So then faith comes by hearing and the hearing by the word of God Romans 10 17

If ye abide in me, and my words abide in ypu, ye shall ask what ye will and it shall be done unto you. John 15:7

AVB are you alright or have you hurt yourself? I don't know how on earth you manage. I hate that my husband can't walk but when I hear tales like yours I have to say it's a relief. I really couldn't cope with it.

Lots of love to you.

Marie x

My sister is in her 8th year of CBD. She has been happy most of the time also. I recently posted my encounter with my sister at 4:00am - it was a blessing because for some reason, My real sister was there and I got to see her as I remembered her. since that encounter, I have looked at her a little differently - because I know my real sister is still 'in there' - trapped by the disease. I hope you will have some touching moments with your sister as you and your family go through this.... by the way perfect anthem for our CBD group: Amazing Grace.

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