Lizbeth, Yes, Dylan participates in play therapy and traditional therapy as well. Jim's anger reprieve, was just that. It did not last long, but thankfully we got some help at the VA Hospital. He is started on Seroquil Wednesday night, 50 mg in the pm and again in the am. The geriatric psychiatrist was terrific and very interested to hear what I had learned about FTD. She chose Seroquil over Exelon for now. She said, "you are very knowlegdable and seem to have a good head on your shoulders, so I'm going leave it to you to adjust the dosage, just keep in touch." I said well my knowledge comes from a great group of caregivers who all deserve MD's with all they've been through! I used the FTD symptom list that we all discussed to help me put together a printout of his symptoms, put an astrerick next to new symptoms since we were last seem and any symptom that I was particularly concerned about I typed in bold. I printed out the list (4 pages) and a med list for each of the 3 docs. This was a tremendous help for me, as it eliminated having to make notes and try to remember all his changes. I highly recommend printing out such a list with severity of symptoms and changes for all dr visits, along with an updated Med list. BUT Jim and I were TOTALLY UNIMPRESSED by our new neurologist. He was very old school, which isn't always a bad thing, however, he admitted to only having 4 hours of study in FTD!!!!!! That was in the form of lectures, he went on to tell us all about his trip to Salt Lake, who cares! I was in obvious pain and Jim was stressed and tired (he was our 3:00 appt the third since 11:00). He did not know why we were there, he couldn't find Jim's MRI or CT Scan Discs and kept trying to inject humor into the visit. We left with no information, no prognosis, no opinion on his exam, NOTHING! So needless to say, we will not be going back to him. Now that my battle with medicaid has resulted in us having MaineCare again, I will be calling our former Neurologist and we will happily be going back to see him. So I guess that's it for now. Dylan is quite pleased to hear that Papa is an a new medicine to help him be less angry. We got him an Air Force Cap as a thank you for being such a good boy. Thank you all for your love and support. S
I'm going to second both the med lists and the symptom lists. I've been doing med lists for years. I take them to EVERY doctor's or testing appointment both for my husband and for me. I had a neurology test myself, looking for dead nerves, which I have, and had a list with me. Turned out one of my symptoms WASN'T neurological. I needed more magnesium. The person doing the testing was a doctor so he put me on magnesium and I informed my family doctor about that, and that the symptoms were no longer a problem about a month later. So do med lists for YOU too.
I've done symptom lists. Both the family doctor and my husband's neurologist were very impressed by them, and I think they helped make it clear where my husband was.
Susan, my dh also has FTD. I have been educating myself on this issue for a year now, plus educating our neuro. I am curious as to what FTD symptom list you have come up with and where it was located. Would you share with me?
SusanL I agree with your neurologist that from your posts you do have a good head on your shoulders. Dylan and Jim are blessed to have you. The reason I asked about Dylan getting therapy is that my DH has familial EOAD and his mom was DX'd with AD when he was 13. She probably had symptoms prior. I know it was devastating for him but he did not get the support that you are giving Dylan. Also, has anyone pointed out that Joan has a link or info on the main page for support for young ones whose parents have dementia?
MMarshall, search under Thread, "FTD Stages" There is a great list of symptoms and stages. I print it out, then created a word document with all of DH's symptoms, then the next visit all his symptoms since our last visit have a star next to them and especially concerning ones I print in bold. This helps us track his progress and helps ME Remember.
Lizbeth, I will search out that site for the young ones, thanks.
What a great idea. My DH has AD but it would still work. Do you also enter a date that the sympton appeard? I wish there was a blank to get us each started to prevent us from re-inventing the wheel. PLease keep us informed. Thanks, Ann
Yes SusanL, the FTD Stages listed here are very enlightening. However, I was hoping that you uncovered some new information to share. I am always on the lookout for the newest papers and discoveries on FTD. I have found that it is always a wise idea to educate yourself on this subject as very few people, professional or lay, understand this disease to any extent. It's the best you can do....M
Susan - that sounds like the first neurologist we had in Vegas. He did no prep work on information before we got there, asked what test were done; didn't even know about the MRI of which we were there to find out the results of. Thank goodness the VA has it so the doctors can access the information no matter where they are. (I am against all this push for medical records to be electronic but in this case it it good). We sat there while he read the CT results, MRI and nueropsych report. Then I had to 'pull' what little we got out of him. He asked hb about five questions, checked reflexes and diagnosed possible early Alzheimer.
We had not faith in him and since we had ended our jobs in Nevada, came back to Portland VA where we have a little more faith. The neurologist we got here specializes in AD and was very good at answering questions. Of course I have many more for her now.
If you put him in a VA home you will need to use the VA doctors I think. I would work on finding a new neurologist through the VA. I know you really liked the previous neuro you had, but you need to check whether he will be able to use him if going into the VA home. I know my FIL, when he was admitted, all his doctors had to be VA.
What does checking the reflexes do? Our neuro does it and I always have to stop him from doing it on my husband's bad leg. Sunshyne??? WHERE ARE YOU when we need you?
I'm not a neurologist, but I can't see much point in checking reflexes every visit. It should be done at the beginning to check for other problems, and then based on symptoms after that. Some doctors do that, or listen to the heart and lungs, so the patient thinks "something has been done". I've had patients complain, after I have spent 1/2 hour going over their symptoms and lab work and then made my recommendations, that I didn't "do anything", meaning I didn't examine them again.
Sunshyne has been a magnificent source for us here for a long time on a myriad of AD issues. her input and knowledge has been an invaluable source for many here-. i know Dr Marsh may be able to give us his valuable opinion on this as well. i am not sure we have any other doctors with us still? divvi sorry! we crossed marsh!
I asked S. because this seems NOT to be part of a regular exam: this is the neurologist, and he did it AFTER giving the MMSE, looked carefully into his eyes, etc. Because my husband's still very verbal (though scoring 16 on the mmse, and having many other confusion problems), the doctor won't say he has AZ, I think he's always trying to identify what KIND of dementia it is. I know this isn't Marsh's area of expertise but Sunshyne HAS investigated all the dementia kinds, more than most.