My husband is 68 years old and has been diagnosed with Progressive Supranuclear Palsy and frontotemporal dementia. Our neurologist suggested that I look for support through the Alzheimer's web site as there are no groups for his exact diagnosis and the symptoms are so very similar. He takes Namenda and Seroquel. He is fairly calm most of the time but he can not speak and becomes very frustrated when he wants or needs something and cannot make that need known. We are kind of learning as we go along (he was diagnosed a year ago) but I would be very interested in any input on ways to help him communicate
Welcome! ehamilton. You are among close friends now. I, myself, am not much help but OH OH OH are you in for a Surprize. There are going to plenty of people who can empathize and been there done that with you. When you have time, read some of the old threads. Again Welcome!!
Welcome to my website. Frontal Temporal Lobe Dementia has some of the symptoms of Alzheimer's Disease, and yes, we have plenty of people here dealing with it. Please go to the top of this page and click "search". Type in FTD. Make sure the "topic" circle is filled in, and click search again. There are at least 5 different discussions on FTD. You can also type in "aphasia", making sure the "comments" circle is filled in, and click search.
Has he been seen by a speech therapist? They can make him a picture communication board. When I worked as a sp/therapist, I made them all of the time for non-verbal children. Shoegirl is a member here, and she is a speech therapist - any ideas, Shoegirl?
Also, be sure to log onto the home page of this website - www.thealzheimerspouse.com, and read some of the "previous blogs". Although many of the symptoms of AD and FTD are not exactly the same, the emotions spouses go through are the same.
Welcome EHamilton! we have had alot of new members lately, its good to see so many finding this site for spouses who suffer some form of dementia. even though i am not familair with the n palsy dx, there are many here with frontotemporal dementia. i saw a post about making having cards like flash cards or something to that effect for a person to show for communicating ideas. even with one picture you may know what hes trying to say? others will come along with better suggestions i am sure, glad to see you found a place among new friends who understand. divvi
Welcome ehamilton...glad you found us. Do you think having some simple pics for him to choose from to show what he wants would help? Ie drink, food, hot, cold, more, hungry? would he recognize pictures and be able to point?
I worked with Mayer Johnson pictures, which are more symbolic, so probably not appropriate for AD patients. Is there any speech site where ehamilton could get a booklet of basic colored photos- food, clothing, ADL stuff?
The ways that can be used to communicate with patients suffering from aphasia depend on the region of the brain that is affected.
Some patients have had some success with speech and language therapy, and there are several centers that specialize in this for dementia patients. There are also some products for home use, such as the one developed by Lingraphica (which may be covered by Medicare and other insurance): http://www.aphasia.com/patients/product.aspx
I've also seen recent reports that music therapy can be helpful. Because many songs utilize short phrases in their lyrics, songs can be used to strengthen areas of the brain that store language retrieval and language recognition capabilities. Since it may not work for all patients, approach the therapy as a fun game rather than a treatment that must work to be successful ... otherwise you and the patient may become frustrated.
Some patients with primary progressive aphasia (a type of frontotemporal dementia) can use a computer to communicate -- type out messages, send emails to relatives, etc -- even when they're having some difficulty speaking.
Picture boards, or a series of cards that display specific messages such as common requests, or a word book (used by pointing to the words that can't be articulated) can be used at later stages when the ability to type words on the computer is lost. Or you can store words and phrases on a computer (laptop may be best) that the patient can click on.
People who have lost speech, reading and writing skills sometimes can learn to use gestures, pantomime and drawing.
Some people have reported that the following books have helpful hints for patients suffering from aphasia:
Talking to Alzheimer's : simple ways to connect when you visit with a family member or friend Claudia J. Strauss
Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia by Nancy Pearce
I shall do a little googling to see what else I can discover...
My husband can only use a few words and sometimes even gets yes and no confused. When he wants my attention, he claps once. If we are sitting in our recliners in the evening, he'll hit the side of his and raise his hand to let me know he wants my attention. Then if he points to the back door and the dog is outside, and I'll ask him if he wants to let the dog in, and he'll smile and get up and let her in. He can no longer read words and grasp their meaning, so cards wouldn't do him any good. It is a guessing game, and I phrase everything in the form of a yes or no question, and even then I might not get the correct response. It is so very frustrating! I know that my hugs and kisses and smiles go a long way with him now. He is very frustrated if I can't figure out what he means, but he usually gives me a couple of chances to guess correctly before giving up. I'm lucky that he is easy to please and is not prone to anger and rages as some others are.
The people at Northwestern have a big program in this area. There's a recent article on computer-aided script training ... they worked with different types of chronic aphasia, but the senior author might be someone who could help you: Dr Cherney, email <lcherney@ric.org> Center for Aphasia Research, Rehabilitation Institute of Chicago, Northwestern University, 345 East Superior Street, Chicago, IL 60611
Mayo Clinic also has a strong PPA treatment program ... don't know if that would be feasible for you, since their locations are in Rochester MN, Scottsdale AZ, and Jacksonville FL.
There was a recent clinical trial on galantamine for treating frontotemporal dementia patients with behavioral problems or with primary progressive aphasia (PPA). The drug was not effective in the behavioral variety of FTD, but did show efficacy in the PPA group -- the language scores for the PPA patients remained stable in the treated patients while the placebo patients declined:
Kertesz A, Morlog D, Light M, Blair M, Davidson W, Jesso S, Brashear R. 2008. Galantamine in Frontotemporal Dementia and Primary Progressive Aphasia. Dementia and Geriatric Cognitive Disorders 25(2):178-185
Sunshyne, I read them (thank you!) however, my husband is so far along with AD that I'm already doing those things he can still do. I love your research!
Uh ... you're welcome, Mary, except I was doing some more research into E. Hamilton's question. You already appeared to have a pretty good handle on developing ways to communicate effectively with your husband. (It constantly impresses me, the level of intuition and creativity that the caregivers on this board exhibit in finding ways to understand and care for their spouses.)
Don't I wish!!! I'm still trying to sort out who owes what to whom for my company going belly up. (This is part of why I temporarily went high-order over WaMu this morning ... more financial problems I do not need.) I've never been on a cruise and would love to go on one ... but on top of money worries, my husband has been on three or four cruises, and simply loathes them.