Screeching

[GeorgeMMXVI]

Hi, I'm new here. Mum was diagnosed with PSP in March of this year after displaying symptoms for three years. She has recently started screeching when she gets frustrated about being understood. Has anyone else experienced this with their loved one?

[Hidden]

Welcome George... you will find a group of knowledgeable understanding folks here. If you are like me... you had never heard of PSP before your mom was diagnosed. This is a good site to find information. My mom did not have the same issue your mom is having... l can only imagine how frustrating it is for her. Hope someone else has more information for you. Sending hugs to you & your mom... Granni B

[timbowPSP]

Sorry to hear your predicament George, and more so ur mum. I was diagnosed 3 yrs ago and still function OK. Here in UK its not simple to find out about PSP, and how to get help, etc. So I am making a resume of my experiences, with advice to help you.My latest update is about 3-A4 pages, so better to send by email with attachment. Takes up so much space here I am embarrassed to put it here on Forum! But will do that if you do not wish to tell you email address.

Best wishes to you both. TimbowPSP

[Stephanielayell82]

Yes my loved one gets very frustrated about not being understood when trying to communicate. Her hand writing is bad as well. We use a white board, a communications board provided by hospice. We have also made index cards with things she needs or questions she frequently would ask. We've all care takers receive verbal abuse when we can not understand her. I've tried explaining to her we are trying our best to understand her but she rather process it as we just don't care to hear her. Best wishes with your Mum.

[LuisRodicioRodicio]

Hi GeorgeMMXVI!These are our experiences an information about.

I am sending you by internal mail of this chat our experiences after 8,5 years fighting with PSP.

Hug and luck.

Luis

Changes in the character of the patient.

People with PSP are affected by changes to their thinking which become more apparent as the disease progresses. There are currently no licensed treatments to help with these cognitive problems. A study (2021-07-16) based on MRI by doctors Rittman and Whiteside from the Cambridge Center for Parkinson-plus indicates that PSP patients have less flexible and less efficient brain activity than normal, the more severely the disease affects them. The changes in activity affect not only functions related to the areas most affected by PSP but also affect the entire brain, even when the examination or "tau" pathology appears to be normal.

*Communication:

One of the symptoms of PSP is that its speech becomes slower and more difficult to understand but generally its intelligence remains. I reproduce some reflections of Kevin_1:

“As the illness develops their mental processing becomes slower. That is they think slower, but they still think as adults and draw on a lifetime of experience and most likely using all of that wisdom which comes with it. So the way to speak is in a straight forward manner, not fast, simple language, but not slow as if talking to an idiot as in a movie, and to give them time. Ask them of they understand if it is complicated and if they want you to clarify anything. This is basic good communications practice. It works.”

For a time we attended sessions with a speech therapist until the disease progressed and no advantage was obtained, at the same time we combined it with exercises at home with a "Breather" (you breathe with some force in and out through it and it has adjustable resistance). Martina_MP uses a free app (great for iPad) called TalkPath Therapy by Lingraphica which has easy to follow speech and cognitive exercises.

On our case, we intend an App but It was not possible to use it for more than few months. As her dexterity deteriorated, she had problems placing her finger on the appropriate word or letter and we were able to buy a plastic screen cover that had an opening for each key on it; this helped to direct her finger and keep it one the right letter. Another problem she developed was the inability to tap her finger in a key or letter, and as such she would often have several letters in a row. For example if she tried to tap the letter A, it would show as AAAAA because she could not get her finger off the letter A quickly enough.

Some have successfully used for some time a cheap iPad plus free software text-to-talk program called Claro (claro.com) with a BigKeys keyboard that attaches to the iPad through an Apple device that is used for connecting to camera to an iPad . A voice comes from the Claro program. It's like a GPS voice.

On our case we have used a plastic laminated A3 sheet with the alphabet in large letters (40x40 mm) supported on a music stand at the height of the patient's eyes. She points to the letters and another person writes on a blackboard the letters that patient indicated.

You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. Over time the pictograms become useless and it is necessary to use only letters, as large as possible.

Speak to the PSP patient as you would anyone else. When it comes time to ask a question try framing it to a yes or no response. It's not that the question is hard to understand but forming/finding the words for an answer may be difficult.

The communication with a patient of PSP is one of the most difficult problems to overcome.

When the patient can still verbalize it is important to know that saying NO requires less muscular effort than saying YES.

When verbalizing is almost imposible and the “communication panels” don´t work, to say YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a squeeze is YES and no squeeze is NO.

There will come a time when the answers are slow and even erratic. In this case, it may be better to prepare the patient and tell that you are going to ask for a response later to a question that you are verbalizing at that moment. When the disease progresses, the response is slower, until making a thumb gesture or squeeze your hand may need at least 20 seconds.

To write down a big YES, NO on a sheet of paper and the patient could point to the correct one seems to be a good alternative.

When all fails, sticking out the tongue to indicate "YES" can be a solution.

Recently there has been an information related to ALS: Voice & Message Banking (Susan Mast ALS Foundation) that may be applied to patients with PSP.

youtube.com/watch?v=WCkjbiD...(Not working as expected?)

[oilman1]

I am not sure if screeching is the right word but my wife will get fits of screaming and crying. Her speech is getting pretty garbled now and she is very difficult to understand and I am sure this frustrates her. Does anyone have any input as to how long someone has when they get to this stage? I would hate to see her go a long period without being able to communicate.

[Birdman42]

Hi GeorgeThere could be several different causes to the screeching but first and foremost you must remember that every persons journey through PSP is different. One of the early things to deteriorate with my Margaret was speech, you must also remember a symptom with PSP is laughing in inappropriate places. So with my Margaret speech deterioration with attempted laughter caused a very strange sound indeed, could this be happening with your mum. You must always remember that your mother was used to being the strong one, the pillar of the family and she is now physically dependent while still able to process everything cognitively - it is very frustrating for her. Please be patient, love her, and try to understand the situation from her perspective. This is a horrible disease that takes years to come to fruition and leaves everybody close scarred. Please love and respect your mother for what she was and take care of her. Alan