No no no no no

vez976

Hello everyone.

My dad was diagnosed with Alzheimer about 5 years ago. Two years ago he was also diagnosed with normal pressure hydrocephalus: actually the normal pressure hydrocephalus was already there when he was diagnosed with Alzheimer but considered to be not serious. It goes without saying that we are now living with this terrible regret that 5 years ago the Alzheimer's diagnosis was wrong and that the normal pressure hydrocephalus could have been treated at that time. Now it is too late and too risky to go for the surgery.

Anyway, his condition has become worse and worse during these 5 years. He is not able to read and write, he can easily remember persons and facts from 30 or 40 years ago but he is unable to communicate, unless someone solicits him. He can sing songs (again, only when someone starts the song) and follow movies: we have noticed that, if someone says something funny in a movie, he reacts exactly at the right moment, smiling. He has now other issues like incontinence and he needs help to get washed and dressed.

Since a couple of months another problem started. He now repeats 10000 times a day "no". This happens at any time and without any solicitation. Very often it sounds like a song, a jingle "no no no nonononono...". He can keep going forever, even while we are eating at the table. "No" is the only word that he can say without being solicited. He can say many other things but only if someone helps him with the first letters or with a hint like "the sister of xyz is...". 

I am wondering why he is now repeating thousands of times "no" during the day and if there is anything that we can do to stop/limit this, because it is really difficult to hear it all day, especially for my mum who spends the entire day with him. My guess is that, being "no" the only word that he can say without any solicitation, it is his way to communicate something to us.

Any help and tips will be very much appreciated.

Thanks!

[Deleted User]

The user and all related content has been deleted.

Anya Sac.

Noise cancelling headphones for your mom. Or one of my go to's with my mom's often continuous talking is earbuds listening to music or audio books. Most if not all public libraries have audio books that can be downloaded onto a smartphone with the Overdrive or Libby app. and borrowed for free. You can put holds on newer and more popular audio books too. Easy to use once it is set up. Most likely it will be easier for your mom to adapt with the help of some tech. than trying to modify your dad's behavior.

vez976

Victoria2020 wrote:

It is possible he has both diseases. And in that case having brain surgery could have been very upsetting for him.

I wouldn't look back, getting a firm NPH DX is hard , the surgeons want to operate, the neuro types waffle.

I don't have an answer for "no"problem  , except to say with a wry smile, he could have been stuck on a more embarrassing word . At least if he picks up the phone he won't ok 400 pounds of dog food being delivered.  

Glad you found us, sorry you had to.

Dear Victoria, thanks a lot for your kind reply. Yes, you are absolutely right: we should not look back. The problem is that, for the time being, it is hard for me not to do it. 

I had not seen the bright side of the "no" problem... thanks also for making me smile. 

vez976

Anya Sac. wrote:

Noise cancelling headphones for your mom. Or one of my go to's with my mom's often continuous talking is earbuds listening to music or audio books. Most if not all public libraries have audio books that can be downloaded onto a smartphone with the Overdrive or Libby app. and borrowed for free. You can put holds on newer and more popular audio books too. Easy to use once it is set up. Most likely it will be easier for your mom to adapt with the help of some tech. than trying to modify your dad's behavior.

Dear Anya, thanks a lot for your kind reply. Yes, that could be indeed a good option. I will talk to my mom and see if she wants at least to try. 

JJ401

I have a friend who had a massive stroke. Her only word now is “no”. She repeats it in a conversational way and her tone is appropriate for a response to what was said to her. I’m not sure she realizes that she isn’t saying what she intends. 

My only advice would be to try to consider the “no” similar to a baby’s babbling and react by tone and circumstance.

vez976

JJ401 wrote:

I have a friend who had a massive stroke. Her only word now is “no”. She repeats it in a conversational way and her tone is appropriate for a response to what was said to her. I’m not sure she realizes that she isn’t saying what she intends. 

My only advice would be to try to consider the “no” similar to a baby’s babbling and react by tone and circumstance.

Hi. Thanks a lot for your kind reply. Yes, it is true that reacting by tone and circumstances to those "no" is very important. The problem is that doing this hundreds of times a day is quite a challenge.

acsmith412

Hi, the first part of your story is very similar to my fathers. He was diagnosed with EOA over a year ago. He has trouble getting his words out and stumbles then often times just does not say anything. He also can remember people and facts from 30-40 years ago... did you get a 2nd opinion 5 years ago and how would one be diagnosed with hydrocephalus?

vez976

acsmith412 wrote:

Hi, the first part of your story is very similar to my fathers. He was diagnosed with EOA over a year ago. He has trouble getting his words out and stumbles then often times just does not say anything. He also can remember people and facts from 30-40 years ago... did you get a 2nd opinion 5 years ago and how would one be diagnosed with hydrocephalus?

Hi. Thanks for your message. When he had one of the first brain scans 5 years ago, the doctor spotted the hydrocephalus but he was not concerned as he said that it was very limited. No, we did not get a second opinion and this is indeed my biggest regret.

About 1.5 years ago, while he was walking with my mom on the street, he suddenly started walking fast and with short steps, with his body unbalanced forward. Then the incontinence started. These are all symptoms of the hydrocephalus. We were alarmed by that episode and we went for another check. They found out that the hydrocephalus had become quite serious. He started a therapy with pills that help getting rid of the excess of cerebrospinal fluid with the urines. This time we checked with two doctors but we got contradicting indications: one said that surgery was still an option, another one said that it was too risky because of the quantity of fluid in the brain. We decided not to take the risk, also because timing was not so good as the mess with covid-19 started. I read a lot of articles where they say that quite often Alzheimer's diagnoses are wrong and it is instead hydrocephalus. Of course this made me feel even worse. My advice is to make sure that the diagnosis is correct and check for hydrocephalus when you see those symptoms. Surgery is always risky but nowadays VP shunting has become a routine intervention. 

acsmith412

Thank you so much for your reply and telling your experience. I am so sorry you and your family are going through this. I hope you get the answers you are looking for!