Cortico-Basal Syndrome

[racewalk]

no question. want just to learn more about Cortico-Basal Syndrome (CBS or CBD)

[honjen43]

Hi racewalk and welcome here!This is a great forum for gaining knowledge and support, whether you are the patient or the caregiver. There are some who have CBD who have contributed in the past. If you search for "corticobasal syndrome" or CBD, you should find related posts.

My husband was diagnosed with CBD-FTD. He died in 2016 but I still contribute here from time to time. My posts can be read if you long touch my emoji.

I learned through Googling, as I was suspicious my hubby had something other than Parkinsons disease because I could see symptoms that didn't fit. He had an MRI which indicated damage to his brain. I asked for him to see a neurologist and he finally gave a diagnosis of CBD. Hubby was encouraged to keep up fitness and movement as his abilities deteriorated.

PSPA have leaflets on CBD. Ask on the "help" menu if you can get one.

Hope you find some answers.

Hugs

Jen xxx

[racewalk in reply to honjen43]

thanks. how many years your dear had the problem? at what age he died?

[honjen43 in reply to racewalk]

When I look back, I think he may have had symptoms from around 2012. When we travelled to UK in 2013, he had a lot of trouble with back pains. He was also suffering from a heart problem. After collapsing while we were away, he was fitted with a Pacemaker on his return.He was able to increase his gym attendance then, but there was a noticeable drag to one foot as he was on the treadmill.

By the end of 2015, he needed a walker and had difficulty getting to the toilet on time. He was managing his own care. He was having difficulty processing information, using the TV remote and calculating, as well as finding all activity difficult.

By the end of April 2016, his body was showing signs it was not managing various autonomic actions, such as blood pressure in general and on standing. His back muscles suddenly stopped working and he could not support himself.

He was admitted to hospital on May 1, and I watched him in 1 week, lose his ability to read, feed himself, to walk. From then on, he gradually lost his sense of presence and was more confused. He had pneumonia on June 1 which was successfully treated. After that he did not walk again.

He was discharged into a nursing home mid-June, it being suggested he could live another 12 months. He died the following week as a result of a total loss of ability to swallow, with resultant pneumonia. He was 77.

During that traumatic period, the only person who made sense to me was the neurologist, who showed me the devastation in hubby's brain MRI scan. His brain was a mass of black holes rather than a healthy white. He was someone who was researching rare brain disorders and diagnosed CBD. It was never confirmed by brain biopsy.

Thank you for reading.

Hugs

Jen xx

[racewalk in reply to honjen43]

thanks Jen, all my sympathies. Hope we do better on my side. My best.

[honjen43 in reply to racewalk]

I think it could help if the patient accepts what is happening, and does his/her best to follow advice.I suggest the first thing to do is to put affairs in order so that someone is able to manage finances on their part. I did not find the medical side of Power of attorney system helpful since the doc continued to insist my hubby was 'compus mentis'. He may have been first thing in the morning - but it was very difficult for him to think clearly, and he was totally unable to move.

None the less, a POA should be set up.

The patient, above all, needs an advocate to speak on his/her behalf, communicate his/her thoughts, and request his/her needs. I found these could change in any 24/7 period and I had to grapple with a hospital system that managed the patient every Monday!

If at all possible, discuss with the patient the possibility of donating brain to research after death since this is the only way to clearly determine cause of dementia. The paper process needs to be completed beforehand so that correct harvesting can be carried out.

I understand how difficult this is to contemplate. I myself have papers for me, but have yet to put in place!

Hugs

Jen xx

[ARutzen in reply to honjen43]

Hi Jen, I am new to this board, my name is Amanda and my Mom (Linda) was diagnosed with CBD Dec 2019, but has told me she has had a long journey to her diagnosis. I am now her majority care-taker and after reading your post about your husband, I just want to say I'm so very sorry for your loss. It's heart-breaking to read and hear what happens to our loved ones with this evil disease. Mom is having incontinence trouble now, and in 2020 she rapidly changed, the left foot drags and her words slur a bit. I've had a hard time emotionally keeping it together as she is so upset as well and knows she's having a harder time. I fear this may be a challenging year for her physically. I know this is a rare disease, but is that how fast it happens at the end? I don't want her to suffer any longer than she has to. I've been praying about it, but honestly I just feel hopeless. I started giving her cbd oil and it seemed to help her relax her muscles some, but all of the medications they've tried don't work.

Thank you for sharing your story, and again, so sorry for your loss.

-A

[honjen43 in reply to ARutzen]

Hi Amanda. No, it is not always as quick - but be prepared to expect the unexpected! There is a type of CBD that progresses more quickly than another. If there is escalation, be prepared to advocate and fight for your mum as I found the medical profession is not always understanding of what you can see happening. Their programmes often do not fit with these sudden changes. I judged how much the disease was advancing by how quickly new symptoms (or changes) appeared.Find as much info as you both can and do the best you can supporting each other. No 2 cases are even similar!

This site was a Godsend for me, very supportive, responsive, and kept me sane. I began to understand what was happening to hubby when no-one else did. There was very little on CBD help I had found until posts began here.

Get powers of attorney in place while mum is able to do so; make a bucket list and complete as many as possible.

We had a very late diagnosis, after I had searched everywhere trying to make sense of what was happening to hubby. I may have drawn wrong conclusions as to how long he had symptoms, but there was no-one to ask, and I felt very alone until I found HU. Latterly, when I realised CBD could affect any part of the nervous system, I felt I could relate all sorts of weird symptoms to the disease!

Keep notes of anything unusual. It may go away again, but it may show a pattern.

Watch out for infection, especially urinary tract.

No. There is no treatment we found effective. We did not have access to CBD oil, but I think I would have got some to try if it had been. Others here feel it has been some help. Use the search feature to find those posts.

We were advised that coconut oil is good for the brain and were given some by the neurologist; common organic stuff off the supermarket shelf. Take care though as it has a laxative effect even in small quantities!

You will both be grieving, but don't give up on life! Do as much as you can for as long as you can. If an activity is difficult , invent a way to deal with it.

Be positive, aggressive, determined under all difficulties. Never give up! Don't accept limitations when they appear; think of a way around them. Quality of life can be improved with attitude! Use whatever aids are offered to keep your mum active.

Read other posts from those with CBD who have been determined to remain as independent as possible. They have left demonstration of how they overcame various obstacles.

I note: 'Bargiepat' kept walking with help of 2 long poles and his son and partner ( have not seen a post from him in a while); Bazooka111 looks after her mum in Ohio and their attitude has always been so loving and positive! Look at their posts. You will find others too.

Being a caregiver means devoting your time to help your mum - sometimes you have to put your life on hold - and you need the support of your family. It is not for ever, and you will know you have done your utmost at the end.

Saying that, remember you need to have time out yourself, relaxation periods to recharge.

All the above was manageable in an era before Covid! I understand how much more difficult this makes life now. I suggest you get help at home that is safe wherever possible, and stay clear of the situations that separate you from mum - if at all possible. At home, you can stay in control!

I wish you both well in your battles!

Hugs

Jen XXX XXX

[racewalk in reply to honjen43]

Hi Jen, we live in France. So, is this CBD oil of some help? i will search where to find it. Concerning whether to let her alone for some time, i see that it can be risky but in the meanwhile it shows her that she can manage things and this is encouraging....sorry not be more clear...

[honjen43 in reply to racewalk]

Suggest you keep in touch with her daily at a regular time, and visit her as often as you can. Make sure your mum is aware of what to inform you so she can stay safe, and in control of her life with your help.Make sure your mum can use the phone, as at some point she may lose that ability. Same with use of TV remote.

Tell her to let you know if she is finding any problem.

Is she able to cook for herself? Is she eating enough?

Or is she too tired to bother. My hubby took a 3 hour nap instead of having lunch. I needed to make his lunch and make sure he ate it before his nap.

Can your mum carry out daily tasks without losing track of the sequence of completing them? My hubby stopped helping round the house - when he was clearing the dishwasher, he stopped because he had loaded some dirty dishes before removing clean ones. These are simple things that may seem inconsequential, but show progression.

Be prepared for the unexpected! If you have a good rapport with your mum, you will perhaps spot changes to ask her about. I hope you get the idea.

CBD oil, or cannabidiol, is one of the good oils that comes from cannabis. I have never used it. It may be difficult to get hold of, and possibly illegal to import.

If you can get hold of it, I understand it can help. In what way, I am not sure. Be careful how you use it. I understand dosage can be as little as 1 drop. You will have to research use, dosage and repetition. It may be available through a doctor, or there may be others here who can help. Ask ARutzen above.

Use the search function and see what turns up on other posts and replies. If you have other questions, write a new post and then your thread does not get mixed up with another one.

I hope some of my comments help you and your mum manage.

Hugs

Jen xxx

[ARutzen in reply to racewalk]

Hi there - I wanted to see if the oil would help my mom who has Corticobasal Deg. and in October we started at 20mg twice a day. She used to play the piano and with CBD has lost that ability, but we still have the piano for her to use when she tries for Physical Therapy. After giving her the oil, she could move each individual finger on her left hand (her left side is the side this started on) and it was amazing to see! But... now 20mg helps to relax her so she's not so stiff. I don't think it's as affective now, but I do have 40mg oil she's going to start trying now. I hope it helps like it did in October.

If you have any access to some, try it and see. If anything it may at least give a relaxed feel to the overall body. I know my mom has a lot of discomfort (not pain) being so stiff all the time. She takes it as soon as she wakes up now so she can feel a little better before we get her dressed.

[Cianodude in reply to ARutzen]

Is it the medicinal cbd or the health shops cbd which is more effective

[ARutzen in reply to Cianodude]

In Georgia it's in the smoke shops right now. I'm hoping it all gets legalized soon so we have the medical version as well, but that's what I'm using now. I'll be honest, it did help her in Oct of 2020, she went from 20mg to 40mg, but now she has CBD gummies that are 300mg and I'm not sure it's doing much. Try it out though and see. Sometimes it just helps to relax and with anxiety.

[ARutzen in reply to honjen43]

Thank you Jen, for your encouraging words. Last March we went to her Attorney and set up all of her end of life ordeals. I'm now her POA and hold her Health Care Directive power as well. I have found this feed a godsend too. It's so hard to get help or answers or anything, but this does help.

I did want to ask - you mentioned to watch out for infection, but said "especially urinary tract" - which stopped me. Mom has been dealing with a UTI since October. (She wasn't living with me until the end of October) and was put on a few different antibiotics over the course of the last couple months. She is up in Iowa with her boyfriend right now, but coming back home in a couple weeks and I think I need to take her to the urologist to see what's going on. Last we spoke, she said she thinks it's better but she still has incontinence issues, so I'm not sure if it's really any better.

Luckily with Covid, she's either been with her boyfriend in Iowa or with me at home. But unfortunately, it's becoming harder for her to do the long car drives back and forth and (this year) won't be going back anymore. We try our hardest to stay positive and my wife is also a great care-giver so I have good support with her and the rest of her family and my dad's side. But - it's a new year and of course with her getting worse - I try to find as much info as I can when I can.

Thanks again