Another change

[Meykat4]

In the past two weeks my husband who has CBD has been non responsive twice. People would talk to him with no response. They would touch him or shake his shoulder with no response. His eyes were slightly open but he wasn't seeing. This only lasts for a few minutes but it's scary. Has anyone experienced this?

[Dadshelper]

Yep dad had episodes like that, he'd just zone out. They'd last maybe a minute to maybe 6-8 minutes. The episodes occured in what I'll call mid-stage for dad's progression and it did stop eventually. It did happen during a doctor appt but even the doctor had no idea what caused it. I was told to document them and try to make sure he didn't fall out of a chair etc.

Ron

[Meykat4 in reply to Dadshelper]

It's kind of scary. Is it nothing to be concerned about?

[Dadshelper in reply to Meykat4]

Doctor didn't seem overly concerned since there didn't appear to be any harmful effects, just a possible CBD symptom. If the episode lasted say into 10 minutes I'd call emergency services, that's just my opinion.

Ron

[Meykat4 in reply to Dadshelper]

Thanks. Hopefully they will stop eventually.

[Hidden]

Larry had one. I had read about it on here. Waited a few moments for it to pass.

[dollydott]

This has happened a few times with my mum also .

First time very scary I couldn't get any response. Probably passed within a few minutes but it seemed longer at the time.

I have just put it down to another symptom of CBD

Lynda 😊

[Meykat4 in reply to dollydott]

Thanks.it's good to know it's not something serious.

[JCRy]

Not sure whether it is the same, but Ian sometimes does this after meals. The doc said it was a rapid fall in blood pressure that can occur after eating. Not much one can do about that, other than eat slowly! He has done this several times when we have been out. Frightens everyone else, but we take it in our stride now. To be honest, it hasn't happened for a couple of months now.....maybe that stage has passed. Who knows. We press on.

Not sure if that helps.

Juliet.

[Yve2018]

Do youuu mind if I ask how long ago was he diagnosed.. I also have CBD and just don’t know what to expect.

[Meykat4 in reply to Yve2018]

My husband was diagnosed about 2.5 years ago. He had symptoms for about a year and a half before the diagnosis. His journey with CBD has gone at different speeds. At first the progression was slow. He had a mild limp with his left leg. Then his left arm started to bother him. After 6 months or so he started falling. We got him a cane which helped for a few months but it became clear soon that he needed more support so the doctor ordered a walker. That did help lessen the falls. Over the next year his left arm and leg continued to move slower and slower. He had trouble with dexterity of his left hand. The doctors thought he had a stroke even though t it didn't show up on the scans. He had to stop working because of the falling 1 and a half years into the progression. Then his right arm and leg started to move slower as well. Which the doctor said can happen. He needed help getting up out of bed and chairs. I got him a lift chair to help him.it probably took another year for his right side to decrease significantly in mobility, although his right side continues to be better than his left. It wasn't until the 3rd year that i noticed his speech getting slower. He took longer to form his word. Spoke more deliberately, like it took time to get the thought into a word. Now in the 4th year he has had difficulty swallowing his food and liquids. He started coughing a lot when he was eating. Liquids were going into his lungs when he drank. They tried thickened liquids for 6 months but he got pneumonia and they told him he couldn't drink liquids any more. They put a peg tube in his stomach on the left side of his belly button. They put his liquids and meds through that. His is now on a pureed diet only. His speech is very soft and slow. He has had speech therapy and physical therapy which does help him a lot. He now has an I pad with a text to speech app on it so he can type out what he wants to say and it speaks for him. That helps a lot. He can no longer be left alone. I hired carers to be with him while i work and sometimes at night. He needs help with all activities now. I'm sorry to tell you all this unpleasant information. This is his journey. What the doctors say is everyone travels this road differently and at different speeds. Some have a much slower progression than my husband. Some are faster. All in all a terrible disease. Keep moving. The longer you do the better off you'll be.

My very best to you and your family.

God bless.

Kat

[Erialcw in reply to Meykat4]

I’m sorry to hear all of the above. My mum is at a similar stage accept she isn’t having the breathing/swalllowing problems yet and her speech is still ok however a lot slower and muffled. Her memory is there on the whole but she is getting a hell of a lot more confused these days and sleeps about 70% of the day. That is when she isn’t needing the toilet. I take her on average 6 times during the night and am utterly exhausted.

My guestion is at what stage did you apply for CHC? Our nurse practitioner says she will let us know when she thinks we’ll be accepted for it but how much more dire do things really have to get before we get the extra help? This country is a complete and utter disgrace. Also, if you or anyone reading knows of a medication that helps with the spasms but doesn’t make you wee all the time please let me know!

Many thanks,

Claire

[Meykat4 in reply to Erialcw]

When my husband started aspirating fluids and got pneumonia. I stated the paperwork for medicaid because my husband needs 24 hr care now and i need help i can'tafford. It will help pay for help so i can get some rest. I hope you can finda way to get rest also.

[Dadshelper in reply to Meykat4]

Search to see if there is an Agency on Aging in your area. They can possibly offer some guidance to resources available to you. If your husband is a vet the VA may be a good place to investigate also.

Ron

[bazooka111 in reply to Meykat4]

This has been quite eye opening; it’s like a carbon copy of our journey so far with my Mom ... one day at a time. When hiring Carers - did you do this Independently? I’m going to start looking for help, and not sure where to start. We are in the US, so it may be a different approach.

[Meykat4 in reply to bazooka111]

We are in the United States too. I have been lucky. We have a good friend who is a retired nurse and wants to help. But now my husband needs 24 hour care and we are applying for Medicaid because they will pay for carers to come to your home to care for your loved one. It is a long process but i feel it will be worth it because we can't afford 24 care. Good luck to you.

God bless.

[bazooka111 in reply to Meykat4]

Thank you for the insight - I’m going to begin looking

[PSomani]

Hi. My mom has PsP for a while now - about 8 post diagnosis. Her eyelids initially were drooping and she had difficulties seeing and keeping them open. That somehow changed to a situation of eyes being open all the time now even when sleeping .

She tends to fall asleep in a chair when we can manage to move her. As per the doctors it appears that she has sleep apnea and thus when sitting she sleeps with eyes open. Not sure if your husband also is sleeping when sitting.

Do check if swallowing / speech is a issue since when the muscles of the throat get impacted or nerve signals stop - it gradually leads to sleep apnea / loss of speech / inability to swallow. My mom has all these issues now.

Take care

Anshuman

[Meykat4 in reply to PSomani]

Thank you for your reply. My husband also has trouble speaking and swallowing. It is a terrible disease. My very best to you and your family.

[Tttp]

My brother has psp he started to have episode’s like you mentioned, that started a couple months ago, now he has been like that for 3 weeks, he is in his 8th year and is on comfort care, all of these symptoms are of course the brain, all these disease’s are so terrible. Nettie

[Meykat4 in reply to Tttp]

I'm so sorry you have to go through this too. It is awful. I never know what is going tio happen next.

God bless.

[Greens]

Hi mum has CBDAnd in her 4th year she stated having same symptoms about 22 months ago and we thought she was having a stroke but no definitely CBD whole left side now incapacitated and struggles with right side shuffling as walking . Problem is she has vascular dementia also so is not sleeping just wants to walk all day her behaviour is getting worse again so trying to get meds checked feel your pain it’s dreadful x

[Meykat4 in reply to Greens]

It is dreadful. Keep strong.