I am new here. Corticobasal degeneration has effected my family since June of 2015. My mom (57 year old) first started showing symptoms that we could not identify a cause: weakness on one side, dragging her leg when walking, difficulty speaking/ word finding what she wanted to say. She had a trip to the ER. Things were ruled out, stroke. We saw a neurologist who diagnosed her with Alzheimer's, however, no CT/MRI/PET scan showed any evidence of it. She did more tests, spinal tap to rule out MS. We finally went to Loyola Medical Center in Chicago where she was given the diagnosis of CBD. It fit the signs/symptoms she was exhibiting. The CBD diagnosis was given in July 2016. November 2016, her verbal communication declined. She used a rollator walker from July 2016 to February/March 2017. She has been using a travel/lightweight wheelchair since March 2017. She is not able propel herself. Her left arm is bent at the elbow the majority of the day/night, it is rigid when we try to stretch it. She often leans to one side, leans forward, head down sometimes. When standing, she needs to hold onto something, someone needs to hold her up; she stands with her heels of the ground, knees bent, and leans forward/bent at the hips. I think standing causes her anxiety about falling, she might not feel she is strong enough to stand. Her communication is very limited at this time. She says "yes", "oh my god", the "i" and "e" sounds (typically when she is crying out). She has been on anti-depressants for about 25 years; she has switched types over the years. She still takes anti-depressants and has anxiety medication for when she needs it. One of the biggest and most frustrating issues is that she can't communicate her needs/wants and can really only communicate by crying. It is sometimes a guessing game for why she is crying, what the trigger was. She can't tell us when she needs to go to the bathroom, when she is hungry. This has to be frustrating for her. It is frustrating for me. I hate when I become frustrated with her because she is crying and I can't help her or I don't know what she wants. I don't like when I react badly towards her; I get mad at myself. It is even hard to apologize to her because that can start her crying all over again.
A little background about myself: I am 26 years old, living at home with my mom and dad. I have an older sister who is married, has a 2.5 year old daughter, expecting another baby this fall, and lives 2 miles from my house. When symptoms started becoming apparent, I was starting graduate school for occupational therapy. I have recently graduated and started my first job in March 2018. It has and continues to be an interesting journey. It was nice to be learning about how I could help my mom be as independent as possible while going through school, but at the same time stressful because I had so much on my plate with everything that goes along with being in grad school. My family is a great support. My sister is a stay at home mom and comes over to my house every day for about an hour before the caregiver comes (my mom is unable to be by herself because she needs help with all daily tasks). I have 2 aunts that spend a day each at my house to sit with my mom. My dad has been good at being there for my mom. He works full time, but helps a lot in my mom's care. My mom did the majority of the stuff around the house and finances so my sister and I have taken that over. I do a lot of the day to day things around the house: dishes, laundry, cleaning. It can be a lot. It is hard trying to balance everything, trying to take care of myself so I feel good and living my life while having the added stress.
My biggest frustration at this time is my mom crying and I don't know why. I am trying to work on controlling my reaction when I get frustrated so I don't take it out on her and make matters worse. My mom and I are very close and so part of me thinks she knows I am trying to help her and we are just both mad at what this disease is doing to her.
It has helped to say all this. Thank you
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kkess
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Oh wow, kkess, that's a lot on your plate at a young age. We're new to CBD(?) in my family, but the people here will have advice. There was an excellent post a while back about caregivers' emotional reactions. . but I can't find it. Maybe someone else can help with the link?
Hope you find all the help you need. People here will understand.
You have so much to deal with right now, demanding caring role as well as the emotional trauma of your Mum's state and the loss of who she was too. That is a lot!
Rule one of caring: Take care of yourself. Seriously. If you start to burn out the whole thing starts to fall apart. So please get breaks away from the house with friends, if you can.
It sounds as if you are well organised and with care coming in too. Great! ( but no surprise given you are an OT.
Communication wise: Have you tried question / answer? Ask a question and get a hand squeeze or a sound to say yes. A no is not needed if it can't be managed. We use this and with practice it is really quite efficient.
So, I will always ask the immediate things first?
Do you want the commode?
Are you in pain.
Do you want food or a drink.
Then go to global groupings and when you get a yes, drill down to the precise issue.
An issue with care needs?
An issue in the house?
A clinical issue?
Something about family?
Something worrying you?
Something you want to convey?
It works - We have even managed end of life fears and concerns working like this.
I'm sorry she cries so much. As you know she will be experiencing massive loss with this illness. I find hugs and assurances that she is loved and will be kept secure and safe throughout works for my wife.
Now, I have probably told you everything you already know.
So I would say welcome to this supportive and friendly site.
I am so sorry you are all having to deal with this.
Thank you, it is nice hearing what other people try and also to get another perspective on things. I do try to meet up with friends at least twice a month and I also enjoy going on bike rides to clear my head/ take a break.
We typically try to ask yes/no questions and if she doesn't say anything, we assume it is a no. Sometimes she will be too quick to say yes and we are unsure if she meant to say it to the question we were asking. We have found a routine helps her, when she eats, having a snack in the afternoon, etc. I try to give my mom hugs and reassure her that she is safe, that I am there for her. I feel because my mom and I are so close, that she sometimes cries with me because she is frustrated with this disease and that I am the one that she can express that with. At those times, I try my best to tell her it is okay to cry, (sometimes crying myself) and I'm not trying to find a cause or reason why she is crying. It is just not easy to hear her cry.
Thank you for your advice. I am appreciative of this supportive community .
Well - It sounds like you are already doing what we do. Yes, the frustrating lack of squeezes often here too. Liz tells me that sometimes its just too much effort.
Bike rides sound good
Yes, this community is my lifeline.
Well, its sunny so I will go and dig a hole for a fig tree.
On a side note, do you have figs? I have one tree that is loaded with figs for this summer (it's about 10 years old) and I planted two more fig trees this spring! Things like gardening and bike rides are so important for caregivers !
Hi Khartt! Thought I was replying to Kevin (I just love to "tweak" him... But I hope you enjoy figs this year I was just on the CBD Caregivers Teleconference with Kary Forsythe - She's in East Texas. Have you ever joined that telecon?
I don't think so. Kary cared for her mom who was diagnosed with CBD, but after brain donation upon her death, it was discovered the mom had PSP all along... Kary was a participant on the CBD teleconference that Janet Edmunson (author of "Finding Meaning with Charles") set up, and eventually took over running the teleconference from Janet.
If you are interested in the teleconference, contact Kary at:
Thank you. I was teary-eyed writing the post, but it is comforting to be able to share and receive these supportive messages from this community. I am on the outside, seeing how CBD is effecting my mom; I remind myself to try to imagine what she must be going through (especially when I am becoming frustrated), how she is feeling.
I don't have any words of wisdom about the crying but want to send you a hug.
I care for Mum also with CBD and it is so easy to get frustrated with the whole situation. I also hate myself when I react to difficult times but we are human and not robots.
It sounds like family are helping out where they can.
I appreciate you sending a hug We are human and we will react badly from time to time. I try my best to move on from those situations and not dwell on how I should have reacted. There are good days and not so good days; I think showing the person you are there for them is important and what matters.
My husband has cbd. I'm so sorry your mom got this at such a young age. Re the crying: She may well be experiencing the "emotional lability" that kevin and patrick referred to. It can be common with cbd. One thing the Neuros cant tell us is whether one's patient will experience more or less of the "fronto-temporal" symptoms..guess it depends on just where the Tau proteins are doing their overfolding thing in the brain.
Communication sounds like an urgent issue right now: this site has historic strings that talk about adapted equipment for loss of speech. You can search via the search PSP Assoc window in the upper right corner of the screen. My hubby has lost 95% of his speech - word finding is terribly hard yet he has comprehension and a great vocabulary!
We are working with a SALT : Speech & Language Pathologist (being an OT, likely you know that.!) They cant bring his speech back but they have strategies both high tech (adaptations & apps for ipads) and low tech (client/family created picture books) to assiat communication. I urge you to invest time & effort into getting SALT assiatance wirh your mom. It may also help give your mom a focus and exercise her brain.
Please keep in touch: ask all your questions, or just rant! We ate here for you.
We did day rehab with PT, OT, and speech after she was diagnosed with CBD (3 days a week for about 3 weeks in October 2016). The speech therapist did recommend a device for communication but I felt the high tech option was too much for my mom (she has a hard time navigating the devices the vendor brought to the session). I did try a low tech version: a piece of paper with pictures and words of common things she may need/want (bathroom, food). Lets just say follow through was difficult due to a number of different people helping in her care. I may try the paper again; have her use it with me and if it works, then train/educate the other caregivers why it important and helpful.
That is great that you are working with a SALT to help your husband in communication. I definitely see the value in the strategies that can help people communicate.
Hi, I am so VERY sorry. You have a great deal on your plate. Thankfully, you also have family that are helping where they can and a caretaker.
I cannot give you experiences with the CBD. My 55 year old son died in May of 2017 from PSP. They are different brain diseases but also similar in many ways.
I too live in the United States.....Los Angeles, CA.
I know you are busy and barely have time to breathe, but I would encourage you to continue to use this site for information, for venting, and for shared experience. If time provides, start a daily journal with notes of how your mom did that day, and don't forget to tell her each day how much you love her, how sorry you are for what she is enduring, and how grateful that she is YOUR MOM. I think it will help you both.
Just a suggestion. .make a chart with the words Toilet etc. All the words that she would use if she were able to talk. When she needs something point to the words and ask her to nod when you have selected the one? That may help
Thanks Kim. I have done a version of this with pictures and words of common things she may need/want. I may try to use it again and see if it helps our communication and then can educate the others who provide her care.
I helped my mom take care of my dad from the beginning of his disease, I left in the last 3 years for a job outside my country (that was the only option I had) but came back when he was bed bound bound in the last 8 months of his life - gave up a career and a good life - I don't regret it at all since only a child or loving spouse can take care of their parent properly in this horrible disease, it's very rare for someone else to do that, though I've seen one wonderful niece doing amazing help with her aunt too
The reason I shared this is that it's a hard struggle, there is a saying "I wish I could say that it gets easier" (but unfortunately it doesn't) - I would recommend reading up here as much as you can and feel free to ask any questions or just express your frustrations
A couple of tips - please look for "teepa snow" on YouTube, she has great videos for communicating with dementia patients - also, if she keeps lying down a lot, look for an air mattress, keep checking for sores on the areas where she sits or lies down, these can take only hours to form - if she is not taking meat in her diet, look for protein powder supplements, that helps against constipation - is she taking sinemet? That may help with motor movement, swallowing and speech - pour luke warm water over her hands and elbows, that may help in her opening and closing them, helping avoid strictures - and lastly, study A LOT and take a decision on the PEG option and when you think would be a good time to stop further interventions, patients usually die from a chest infection or UTI, one that keeps recurring and you want to stop further treatment after the 2nd or 3rd or 4th one...
I am sorry if I sound harsh but these are the exact challenges that I faced with my dad and I wish I had considered them earlier
Thank you for all the suggestions and advice. I have actually seen one of Teepa Snow's videos while I was in OT school, but will look back at the videos for a refresher.
She eats a fairly well balanced diet and also loves her chocolate treats! She is not taking Sinemet. We have an appointment with a new neurologist on 5/17 (her first neurologist moved to Florida and the one after him passed away suddenly). My sister and dad are going, but I will send a list of questions with them.
My mom does not like showers, I have thought about how that warm water would help her joints. Showers are a little difficult... I am looking into getting a moist heating pack. I have a friend who is a physical therapist who I am going to talk to about it.
Kara, it sounds like you are taking great care of your mom - best wishes for the future
Sinemet is a bit tricky, it doesn't help some people at all but for my dad it was a life changer, he could speak and swallow properly till nearly his end - but a dose that's too high can also cause terrible leg spasms
My dad had strictures in his hand and he wouldn't open them at all, then one day I took him to the washroom, I turned on some lukewarm water from the tap and he put his hand (which was perpetually a fist) underneath and just opened it himself - I was so surprised and happy... so maybe just pouring warm water from a pot can help or a warm, wet towel
Teepa Snow gives some good tips on communication so those could come in very useful plus there is a special technique for holding a dementia patient's hand, without hurting them
A few tips I am reminded of: some patients love physical contact so Teepa Snow's technique of holding their hand may come in specially handy - some patients develop a strong sweet tooth, my dad hated sweets but in the later stages of PSP started craving them - my dad was always hard of hearing in one year but developed a very strong sense of hearing later on
I am sorry that we have to welcome you here, but I think you have found a great place for support and information on this terrible disease. My wife’s story is almost identical to your mom’s. They are very similar in age, which is very young. My wife just turned 59 in January. She too was misdiagnosed with Alzheimer’s, but the symptoms did not completely match. We received the CBD diagnosis last fall after seeing a neuro specialist here in Houston. She has the same leaning, speech, and limited left side use as your mom, however the worst thing is the crying. She is on anxiety medication, but I don’t see any benefit.
I usually ask her if the tears are happy or sad. Surprisingly she is sometimes happy. Sometimes I am able to comfort her, but often she is just agitated. I understand about 5% of what she says, so I never know why she is crying and can’t do anything. At first she would cry only when we were alone, after some time she would cry when our kids were around, now she will often cry in public. People often try to help, when there is nothing they can do.
I am no doctor, but I believe that the protein build up in her brain are in the area that control emotions, which causes this. So, all I can do is just try to comfort her. It is heartbreaking for me.
As a father, I am glad that you are helping your dad as much as you do. My 3 kids help, but not as much as you. I retired early at the end of last year to care for my wife full time as she was never comfortable with her paid caregivers. I get support from my kids, my wife’s family, and her friends. They make this cruel disease bearable.
Take care of yourself and your dad. This disease drags down the health of the loved ones around the one with the disease. I find that sharing on this site helps me immensely.
My thoughts and prayers are with you and your family. Take care,
Thank you. I am sorry to hear you and your wife are going through a similar situation. I think my mom cries more with my dad, sister, and I. She has started to cry with the caregiver a little too. My mom does not get out of the house very often. She gets anxiety in the car as well and it can cause a very stressful drive for the driver and her. Luckily the weather is getting nicer here and we can take her outside or on walks around the block.
I have also thought that the protein build up is related to her emotions being effected so greatly. Can I ask if your wife was taking any anti-depressant medication prior to the diagnosis of CBD? My family and I have often wondered if the medication had some role in this disease. Prior to the diagnosis, she was taking anti-depressant medication for about 25 years. She rarely cried. She felt sad. I remember at funerals, she didn't cry. I have a cousin who said she took anti-depressants and didn't cry while taking them either. I have wondered if, because she spent so much time not being able to cry, that now she can, she does so very often and it doesn't take much to make her cry?? If that makes any sense. Just more questions, but not many answers. My mom is still taking 75 mg of an anti-depressant in the morning and 10 mg before bed. She has Xanax for anxiety, but we don't give it to her unless her anxiety and crying is very bad. She gets sleepy and is almost "out of it" when she takes it. I don't want her to be in a fog all the time.
Your question makes sense. I have tried to find causes and relationships with this disease and have found none. My wife did not take any anti depression meds prior to her Alzheimer’s or CBD diagnosis. She started the anxiety medication when she was first misdiagnosed with Alzheimer’s. She also showed signs of anxiety so that neurologist prescribed it then. Prior to that she showed normal exhibition of emotions. The crying has become worse in the last 4-5 months. This was about 5 to 6 years after what I believe was the initial symptoms of CBD started. It appears to be the progression of the disease.
I too don’t want her to be in a fog all the time, so we have not pushed it (medication) with her neurologist, but have explained about the crying. I just try to reassure her and comfort her when she has those emotions.
Really empathise with everything you have said my mum has very similar symptoms it was like reading our story .... mum cries uncontrollably and no one knows why she cries when we arrive to visit but very quickly changes to more aggressive behaviour it’s very hard to understand what is happening in her brain is it because she is in need of something or it’s the condition and hallucinations . My heart goes out to you and your family it is so difficult,.... we have difficulty getting used to the condition and how to deal with the twists and turns follow your instincts and seek advise here I have found it invaluable x x loves and hugs 💕
So similar to my mum although were 4 to 5 yrs in mum is slowly deterioatin her breathless ness is a problem shes fluid in her legs and her bad hand she bites heads off quickly hate this im from northern ireland isolated to this as its extremely rare here
Hi kkess I have CBD I was diagnosed last October although was 4 year ago this summer when I first noticed the first symptoms! I now 61. I think I understand why your mum cries. You go from being an independent person who has brought up a family and run a home to someone whose life is slowly taken over by this disease. You grieve for what you had and lost because you can't do it anymore. You grieve for the future you will miss. A friend's daughter is getting married and all I think of is will I see my daughters wedding days ? Wii my new grandson know me? I am unable to look after him as I did with his brother. The list of things which make me cry is endless. I cried when I discovered that my eldest daughter is raising money for the PSP association in lieu of birthday presents. Her Facebook post has been shared many times. My daughter like yourself is so strong and loving. Next time your Mum cries give her a hug . She knows you are there for her. it's not an easy thing to come to terms with. Thinking of you and your Mum.
Thank you so much for this message and your insight. I am so terribly sorry to hear that you are going through this disease. I have thought about this path that our lives are taking now and what the future holds. I am not married, will my mom be there? When I have kids? My mom was so excited to watch my sister's daughter, but is unable to. She is able to see her granddaughter grow, but I know she would love to be able to be more hands on in playing with her and spoiling her. It helps me when I give my mom a hug that she gives me a squeeze back.
You are doing an amazing job. My wife Ruth is 58 with CBD but at an earlier stage than your mother. She has been taking SSRI anti-depressants since diagnosis and they seem to be helping - keeping her reasonably happy under the circumstances and not dulling her brain further. She is currently on 25mg of Sertraline in the morning and 30mg of Mirtazapine at night. She has tried Citalopram and Fluoxetine but prefers the current mix. It may be worth looking at switching drugs.
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But I hope you enjoy figs this year 
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Mom is at her wits end.
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