I was wondering if anyone can help & possibly offer some advice on what stage we are at with dad. We are getting no where with the neurologist. I appreciate CBD is rare but to be left in limbo is horrible.
My dad started to show symptoms around 2017.
In 2021 he was diagnosed with CBD.
Today: he is fully wheelchair bound.
Requires standing aids for transfer.
We need to place medication into his mouth (he can't coordinate the hand movement).
Food needs cutting.
Urinary incontinent (catheter in place).
He is very rigid especially on the right side.
He struggles to find his words and speaks slow and quietly.
Late afternoon he becomes very disoriented & confused.
Neuro nurse believes he is at the start of the second stage. I feel he is more advanced.
Anyone able to offer an insight.
Many Thanks 🤗
One other question, my mom is dad's main carer. On my non working days I help and support where I can. The days I'm not there I feel riddled with guilt. I have currently taken 2 weeks off work. In this time I can see how much things are deteriorating & how shattered mom is. I'm not sure what the answer is? Any ideas on helping out or strategies would be good. Does anyone else struggle with guilt.
Thank you again 🙂
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RW22
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Hi RW22 . Welcome to this site. You will find it a life saver and a valued source of info and support, as I did. I am Jen and I live in New Zealand! Warning! This is a long post, but I hope you can find some pointers to help you all.My hubby was diagnosed with CBD a few months before he died in 2016.
I knew nothing about this disease, nor did any other specialist, except one, until I found this site and began to come to my own conclusions.
I think hubby began to have symptoms around 2012.
You can read my posts if you long press my symbol at the top of this reply. I was posting for a couple of months only as his was a fast progression. Your dad's progress may well not be as quick!
I learned to trust my suspicions, and to watch hubby's progress and its speed as a guide to how much/little time he had, and to post comments on apparently unrelated symptoms that others have now also observed: autonomic responses such as scaly itchy skin; apparent times when the body was unable to maintain a normal blood pressure or temperature. Ask for physio to keep his limbs as mobile as possible, and massage to keep sensation alive.
I urge you to do the same. Note how quickly your dad's abilities change, the frequency, however small they are. This downward trend and its speed showed me a possibility that maybe we had little time, much more clearly than what doctors were telling me. I learned to think ahead of hubby's needs, as the ward worked on a weekly progress plan - and that was too slow for hubby's progression.
If I noticed he was not managing to eat lumpy foods and needed a soft or pureed diet, any change would have to wait until next doctor's round nearly a week away and no-one would listen to me!
Hubby was also brightest in the morning and could eat his breakfast and understand the doctor when he spoke to him, but when I arrived late morning, he was asleep and not always able to communicate clearly. So again they did not understand!
It was fast. I understand there is a CBD that is slow to progress, and a CBD that is much faster. He ended up in hospital suddenly as he lost use of back muscles and we were unable to manage at home. In 6 months he went from ambulatory without a walker in January, to being unable to mobilize, read, use a remote, feed or toilet himself in early May, and was discharged from hospital to a nursing home at the end of June unable to leave his bed. I was told at discharge that he could have another year to live.
I noticed his swallow reflex seemed to be deteriorating within the next few days, but this was not observed by staff at the home. He died from pneumonia 4 days later.
I didn't have a job or other family who needed me so I was able to put my life on hold to fight for what I sensed my hubby needed at the time. Your mum will value your help and support. She will be exhausted and bewildered and frustrated and angry, and grieving all at the same time.
Get nursing help if you are able, although paperwork is likely to be laborious and slow and frustrating! I think you might get some help through Hospice or MacMillen nurses in UK. There will be advice from other UK carers on this site too.
If at all possible, I urge you to give your mum as much of yourself as you can, talk to your dad even if he is non-verbal and show your love and support and HUGS! Make him smile! Some of him will still be listening and be frustrated he cannot communicate easily. There will be fewer "If only ..."s afterwards.
Your mum will be grateful for support and love too. I understand what she has been going through and it is OK to rant and shout here as we understand too! Show here the supporting posts, or get her signed on too.
Yes, we have all got angry at our loved one, and we have all felt that guilt you ask about! It is "normal", especially without sleep and cleaning a bathroom for a second time in a few hours!
There is a very rocky road ahead for you all, and it may be long or short. However it goes, I know you will get help and support and knowledge from here, and will no doubt make friends too. Before Covid, there were meetings and area support groups in UK. Some are starting up again now. I wish you all a safe journey.
Jen covered so much, but I wanted to underline her statement that feeling guilty is part of the experience - try not to let it get in the way, just do what you can and know that this stage, whatever it is, is temporary. Hang in there.
The old bag was diagnosed in2009 and we have found there are no stages to CBD . It is just that days can change for better or worse. It is awkward but for your mum push for home carers.
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 and your family I am sending these notes-document with our experiences and our informations by the private mail of this chat.
i have the same question about myself! I too am getting nowhere with the neurologist!
I was diagnosed may this year in May. I am currently still mobile but I am starting to have difficulty swallowing and have some problems with memory and other cognitive stuff. Jx
I'm so sorry! It really is upsetting and frustrating.
My dad was referred to the specialist neurology nurses October 2021 (we live in the UK) . This was organised via the GP and the hospital.
I also referred him to the local hospice after talking with the PSPA helpline. He attends once a week, the group supports living well, social activities, events etc. While he is there he is seen by the physio and speech and language therapist.
Maybe this is something you could look into if you felt ready?
Hi, my mum has CBD and I am really not sure what stage or how advanced it is although mum is not in a great way now. My gut tells me in the advanced stages but really no real way of telling as after reading many of the posts on here every journey seems very different. Against my profile name I have placed a record of mums journey to date which may be of interest to you. Hope you are ok as it’s a horrible place to be with our beloved parents.
Thank you for replying. I have ups and downs. Its just so cruel this past week has been pretty naff. I need to get in the mind set, my dad is here, things may be very restricted but he is here. Where as others are not so fortunate 😔. My dad is a similar age to your mom. I also hope you are managing OK
I think being fully wheelchair bound counts as advanced, but advanced includes a broad range, and could last for weeks, months, or several years. I often review the descriptions of stages, and I realize the real question in my mind is, how much longer will this go on? And how much more function will my mother lose? There is a likely range of remaining survival time, but no one really knows. Also to consider is the person’s age and other health conditions and risk factors.
We are from Belgium and my wife (age 64 now) has been diagnosed for CBD also beginning 2017 and the symptons you describe are similar. Few weeks after first symptons in 2017 the neurologist at that time already diagnosed her with CBD.
As husband I take care of her at home. She gets ergo and fysiotherapy 3x times per week. Occasionally swallow problems and coughing afterwards. I prepare food in fine parts and try to make it delicious as possible. She likes to hear music and that really activate her mindset. I do everything to get that smile on her face daily. I also try to get her outside as much as possible and go somewhere for a drive for shopping, sight seeing (not more than 1 hour drive because more is too tiring). We started hiring a standing aid because helping with transfers is getting bad for my back. Neurologist was helpful in order to get the right medicin (baclofen for muscles) and duloxetine(for anti depressiva). The latter was too temper her tending crying mood.
This is my first reply on my first day on the site. Hope it is helpful for someone.I have had CBD for 5+ years and live in Wisconsin, in the US. My biggest frustration was the specialists referring me to the internet anytime I asked about timelines, exceptions, or average expectations! I blame it on lawyers in the US. It is probably just - they don't know.
That said I have a GREAT GP doc! His wife had MS so bad she had to quit as an orthodontist. Now you can't tell she has anything after 15 years. So he specializes in alternative approaches to brain disorders. I had 30+ years in the organic food industry (BIO in Europe) so I was very familiar with alternative medical approaches both in the US & Europe as I lived in Belgium.
My research indicates it varies a lot for individuals. Maybe an average of about 6 years and I believe the longest was 13 by a woman who was also the youngest to get (I think at 41).
Exercise, diet, and SLEEP can effect it greatly!! So my goal is 14 years. It was triggered in May of 2017( at 64), diagnosed June 2018. My speech is declining, balance getting worse (I wear an Apple watch with fall detection - it works!), and I have to be more careful eating. Worst is I laugh and sometimes can't stop. Seriously --- recently a problem at a movie theater.
Exercise - Anything is good. Built a gym in the garage - with a foam mat for falls. Indoor bike, hand weights, etc. I do a LOT of yard work because I use all muscles & if I fall its grass.
Sleep - All the usual things I do. But, when I went on a carnivore code diet 2 years ago, I sleep sounder!
Diet - MOST doctors will not recommend my diet. But I think they are wrong. In short eggs, fish, grass fed beef, & more beef, hard cheese, some chicken , ham & pork. NO grains. Reducing inflammation is the goal.
Lastly read LIFE FORCE by Tony Robbins. Medicine is changing VERY quickly.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
It is probably just - they don't know.
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