I’m new here I’d really appreciate your experiences on how you are communicating as a caregiver with a patient who cannot speak.
We were introduced to 3 forms - 1. basic printed flip sheets with phrases 2. Using a intermediary device - eg push that replicates a mouse to select and generate speech3. Tobii eye gaze
There are so many models out there as well as permutations in combining the software and hardware
It’s been exhausting just with the caregiving - and I’m not tech savvy but my husband likes to play simple games eg sudoko and I’m not sure which set up allows for communication and games
He can’t talk with and has very little movements that can be erratic If anyone can recommend what they’ve been using with some success - software and hardware - I’d be so ever grateful
Many thanks in advance
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Dankhl
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we tried a few different methods with my mum, although not too technologically advanced. We’ve tried apps, place cards for her to hold up but we’ve found the simplest form of thumbs up or thumbs down in response to a question. She’s managed with this for a couple of years now but it’s obviously prompted by us asking her a question. Sorry I can’t be more help.
Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.
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 support of a GP and the "trial and error" method, you could 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 and if the those notes-document with our experiences and our informations are of your interest, do not hesitate to let me know to send it by the private mail of this chat.
Hug and luck.
Luis
Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.
we've made index cards with everything my loved one would want and attached to a tri fold board she uses a pointer to point to it. We tried apps and so forth but hand isn't steady or strong enough to use. Best Wishes!
thank you for your reply. Unfortunately my husband is unable to hold a pointer. But based on your experience - I might just make index cards with all he wants and he just needs to close his eyes or squeeze my hand to ‘yes’ or ‘no’
I am very literate and can type but when my speech is at its worst I’m too tired to even think. I use a laminated page with simple pictures to point to what I want
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