Wednesday, April 23, 2008

frontotemporal dementia resources (& ginger too)

Yesterday, I received the book “What If It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia” and started reading it. It’s not a quick read, but from what I’ve read so far, it gives a careful, detailed presentation of what FTD is and is not, what happens in the brain, the different types and symptoms of the different types. I’m only a couple of chapters in (I just started the chapter on genetics) and I already understand things better. It’s not a pretty picture and it’s really distressing to read the details, but I much, much prefer to know the whole truth about everything than to bury my head in the sand and have hope not based in reality. I sent a copy of this book to Dad and he should get it in a few days.

Another resource is a private support group: FTD Support Forum. To join this, you register and post a message to the moderators to tell them why you have an interest in joining and within a pretty short period of time, they approve you (if your reason is legit). You will see me there as “wordsilk” if you join.

The Association for Frontotemporal Dementias has a lot of resources, though it’s a confusing site to navigate.

Though this information is for medical practitioners and not specific to just FTD, I found it very useful: Dementia: Update for the Practitioner. It’s not as dense as some medical articles I’ve tried to read.

Frontotemporal Dementia Caregiver Support Center is very useful. It’s a great place to start.

The Pick’s Disease Support Group is a British organization, but has lots of useful information. In particular, reading Pick’s from the inside out by Dr. Bob Fay really helpful—it’s his own story as an FTD patient.

Neurology Now, while covering a broad range of neurological problems, makes its articles available online. I think you can subscribe to a print edition of it for free.

What I still need to find out is what kind of resources are available in Michigan, such is there a way to get a referral to a social worker in my parents’ neck of the woods who can help them get what they need in terms of in-home or respite care or any other things available. That’s my next task, unless someone else in the family can find this information faster than I can.

GINGER
Last week, the onco vet told us that since her white blood cell count was down so much after each treatment, she was worried that the lymphoma had gotten into Ginger’s bone marrow or than Ginger had a genetic predisposition to drug resistance and would need to be tested for this if the WBC count was low again on Monday. Which really depressed me, worrying about this (on top of worrying about Mom and Dad and my brother). Fortunately, the WBC count was perfect on Monday. So the chemo is working and she’s officially in remission. She has one more weekly treatment next Monday, then every other week for six treatments, then it’s every three weeks until she’s discharged. I feel much better now. She gained three pounds, though, so now we have to cut back a bit on the food again. It won’t do her much good to be cancer-free but unable to waddle up the stairs!

And my brother got a diagnosis for a problem he is having that is not the fatal, incurable disease they thought he had, but one that is treatable—I am immensely relieved by that.

posted by lee on 04/23/08 at 09:14 AM

frontotemporal diseaselink-a-rama • (1) commentspermalink 
Page 1 of 1 pages