Hello Mary. I don't know how else to contact you but to post here. I just Google searched 'FTD specialist Montana' and one of your posts came up from this message board. My DH just was told yesterday probably FTD...typically long story...his neuro had the bed side sensitivity manner of a mack truck, now DH refuses to see him again or anyone else for that matter and he needs neuropsych and eeg. Thanks, Marise
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease/dementia has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
Regarding FTD - Go to the top of this board - click "search". Type in FTD, and make sure the "topic" circle is filled in. Hit search. There are at least 10 topics, probably more, on FTD that may interest you.
You can post this request for Mary in Montana to contact you under the "sticky" topic above - "Use this topic to contact each other." Just in case she doesn't see it here.
Hi, Marise. I just saw your post. Did you happen to read my comment a few months back about DH last doctor visit? I am not going to be much help for you in regard to doctors, I'm afraid. As I mentioned in the post that I am referring to, this was the first visit where I think the doctor got the message that there might be something wrong with DH that isn't related to his hormones. We are not diagnosised yet and will probably not be for several years. Depends on how fast things like calendar confusion happens. I figure that we are 8, 10 or may be longer years from the start of problems. probably around the time when he got the tumor. May be related, may be not.
I have not tried to locate a nuro in Montana. We have a poster in the Flathead Area. One of our few male members. May be he has more info on a nuro for you. I think he is dealing with AZ rather than FTD.
Did you put your age and location in "sticky notes"? I'm assuming that you are from Montana also. We also have many members in Washington state and Idaho State. I think that Fran is from Oregon or Washington. Possibly, one of them can help you with names.
At some point, I will call you. I can't do it from home and would need to get some private alone time on my cell or from work. Private alone time is a contradiction when talking about FTD and AZ, isn't it.
Take care and please let us know, if you get any information.
Marise, now that Mary has your information, I would advise you to erase it here for your safety...you can keep your e-mail address in your personal information. We don't know who all lurks here.....
Hi, Marise, I found this while doing a search. It states that FTD is one of 50 "compassionate allowances" illnesses for SSI. The number to refer to is "DI 23022.170 Frontotemporal Dementia (FTD), Pick's Disease -Type A" Here is the link that I found. I am just wondering if you happened to see this article. Has anyone told you about FTD being one of the 50 illinesses?
When you do fill out the disability paperwork, make a copy of the documents from the Social Security website and include them with your paperwork. I did this (my husband has FTD) and he was approved through the compassionate allowances (I asked)---the clerk at the office actually asked me where I got all the information and seemed surprised when I told her it all came from their website.
Deb, thanks for the follow up. I think you actually mentioned the Compassionate allowance "thing" previously. I was surprised that FTD is one and AZ is not. I read something that said that there were hearings scheduled for late-July 2009 to make AZ a compassionate allowance illness.
Mary, you're correct. There will be a public outreach hearing in Chicago on July 29, 2009. The subject of the hearing is Early-Onset Alzheimer’s Disease and Related Dementias.
Here's the website for Compassionate Allowances -- http://www.socialsecurity.gov/compassionateallowances/