What's going on....

Well, Jim has actually been feeling pretty good. He got a TENS unit to help with the pain in his side - trick it getting him to use it. He says the pain hasn't been as bad - but I am not sure if that is 100% truthful. The last time he used the unit the patches bothered him so he may not be using it because of that. We'll see.

I have had a couple of interesting "observances" with the kids. Ruthie was with a friend of mine when she told her "Daddy's muscles hurt him so he don't walk good." So yes, she does notice. On the flip side Mikayla resently told my mom that "daddy's medicine must be working because he's remembering more." Not sure how true that is. I'm not seeing it - but at least the incidences of him throwing out important papers and homework seems to be on the decline.

We return to see the FTD neurologist on November 23. I am eager to hear what he has to say. We also have a follow-up with pain management coming up but I am not expecting much news from that.

As for me apparently my body has decided that we don't see the doctor enough. SO after about 2 years of increasing symptoms I was diagnosed with fibromyalgia last week - 2 days before my birthday. I have been trying to pass all the symptoms onto first working so much then all this with Jim. But really things are calmer when it comes to him. I am experiencing extreme insomnia and other sleep issues, headaches and body aches. I feel like I have the flu but never get the other symptoms. The doctor wants me to return to the sleep center for follow-up to see if we can work on the sleep issues first. He would also like me to follow-up with a counselor or psychologist. Personally, I tried that and quit after feeling like all I was doing is explaining ALS and FTD to her. My FTD group is great therapy. I will stay with that for now. I will also be following up with a few more doctors. Nothing scheduled yet - but working on it.

Other then that things are as normal as they get in our house. I am now volunteering 2 days a week at Mikayla's school. I help with their accelerated reading program and am proud to report that Mikayla is leading the class in the program. She is not a strong reader but she loves to read and be read to. She has completed the most books in the class. She reads to daddy a couple times a week. She retains everything - sometimes better then I do! She is also being tested for ADD. I am not sure if she has it yet or not. That appointment is also coming up. Sometimes I am convinced she does other times I am sure she doesn't. Either way I think that it is good to get it addressed early before it becomes a real problem.

I also have decided to volunteer one day at Ruthie's school. (Mikayla's is just a couple hours/week. So Wednesdays I leave her school and go to Ruthie's.) Ruthie is having some anxiety issues at school (that's my kid alright!) She has much improved since the beginning of the year but I hope this will get her there the rest of the way. I have made many little friends in her class and it is pretty fun. I get to eat lunch with them and everything. The teachers are rotating which of my new friends get to sit at our table since they fight over it. Ruthie is getting a kick out of me being there so I enjoy doing it.

Well that is all for now. In case I don't check back in before - Happy Turkey Day!! Remember, be thankful for every day and what you have not what you want.

FTD vs Alzheimer's Disease

Clinical Features of Fronto Temporal Dementia (FTD) and
Alzheimer's Disease (AD)
(information according to the Alzheimer's Association)

AGE OF ONSET:
FTD: 50-60's, rare after 75. Younger than AD. (Jim was in his early 30's)
AD: 70's and up. Increases markedly with age.

EARLY BEHAVIORAL PROBLEMS:
FTD: Common. Often mistaken for a psychiatric disorder.
AD: Unusual, other than irritability, usually unchanged.

SOCIALLY INAPPROPRIATE BEHAVIORS:
FTD: Common early in course. Often mistaken for a psychiatric disorder.
AD: Not common early in course. Usually seen later in disease.

MEMORY IMPAIRMENT:
FTD: Less prominent in early course.
(Jim's short-term memory was less than 50% 1 yr ago. His long term memory is good.)
AD: Early and profound impairment.

LANGUAGE PROBLEMS:
FTD: May have early speech impairment (progressive nonfluent aphasia type) becoming mute.
(Jim has some impairment in voice projection and "slurring.")
AD: Usually associated with memory impairment (recall of names, words.) Speech affected later
in course.

VISUOSPATIAL DEFECT:
FTD: Rare in mild to moderately impaired person. (Jim can get us out of downtown better than GPS!)
AD: Common. Gets lost in familiar territory.

MOTOR SKILLS:
FTD: More common in FTD with motor neuron disease (ALS). (no explanation needed I think)
AD: Less common until late in course.

MOOD:
FTD: Marked irritability (Jim -check), loss of pleasure, difficulty understanding or describing emotions (check), euphoria, lack of guilt (check), apathetic (check), lack of empathy (check)
AD: Sadness, tears, loss of pleasure, apathy, guilt

PSYCHOTIC FEATURES:
FTD: Usually jealous, may have bizarre behaviors, obsessive/compulsive behaviors, rare persecutory delusions. (Jim has mild OCD tendencies)
AD: Usually have delusions of misidentification (not recognizing family) or persecutory. Usually occurring in middle or late stages.


Also, check out the FTD documentary "Planning for Hope."
http://www.planningforhope.com/ password: ftd2010