Hi. I am new to the forum and would like to be in touch with others who are dealing with Pick's disease. My family is trying to develope a plan of action to help my mother who is in the early stages of this rare dementia related illness. I thought this may be a good place to start.

Kristine

Hello Kristine. Welcome to the forum. I am fairly new here myself.

My mother has frontotemporal dementia. She is not diagnosied as Pick's, but rather as a non-specific FTD.

However, the damage is in the same areas of the brain. We have been having quite a time with her behaviors.

As you are aware, this type of dementia, for some time, leaves the individual alert, oriented, and lucid. They further retain a lot of their executive funcition and can interact with their environment.

Mom is easily irritated, gets agitated, has dreadful judgment, has lost empathy, is impulsive epecially in re to spending.

Well, there's quite a bit more; but it is all so perplexing. Mom does NOT believe she has anything wrong with herself. It infuriates her to hear a physician tell her she has dementia.

I think a good neurologist who you see on a routine basis is key. The next is to get all your ducks in a row with DPA for healthcare and finance if you have not already done that.

All the bills now come to my house. Initially, I would go over everything with her before checks were written, however; she no longer can do that with any degree of interest.

Mom at this point is living in her own home with a 24 hour caregiver. I don't know what the future portends, but it is a real concern.

By the way, have you gone to the AFTD website?

Let me know how you are doing. You are the first person I have seen here whose loved one had FTD.

Hi Kris & Johanna

My wife has an FTD I speculate to be Pick's, she is 45. She has a bother who also is dealing with the same and is in NH. I lurk around here from time to time to get info as there are some great caregivers here that are very knowledgeable. Here is a great site that may have information you may find useful. http://www.ftdsupport.com/

Take Care, Mike

Thanks for responding. I have been in touch with the AFTD and they have been helpful. I have also reached out to the the Alzheimer's Association and they were very responsive. I hope to form a memory walk team this year and designate our pledges for FTD and Pick's Research. My mother has had some stange behavior for a couple of year's and it is progessing but she is very stable and manages ok on her own when my Dad is at work. She left work last year at 59 whcn she was diagnosed with Pick's at the Dent Institute in Western NY but little scheduling has been done for follow-up or a plan for managing her illness outside of visits to her GP. She is currently on an Alzheimer's drug and is now having hallucinations. I am not sure if this is a common symptom of the illness, or of the medication?

First: Mike; thank you. Wish that the FTD site had an ongoing forum like this one as the boat in which we are rowing is a bit different and leaks at different points.

Second: Kristine, perhaps having the GP manage your Mothers FTD is not the most optimal. Most GP's are not on the cutting edge of this complex and tortuous disease.

If this were my mother, (and it has been), I had her GP take care of her physcal issues such as her BP and UTI's, but would use a Neurologist to handle the FTD/Pick's. Neuro is so much more on the cutting edge and this is part of their professional focus.

Let us know how it is going for you. The stress will only increase as the disease advances, so your personal and medical support teams are critical.

Thinking of you, Johanna

Hi, I am a caregiver for a lo with a FTD or Picks disease. There is a Picks Disease support group online as well as a new site called ftdsupport for caregivers.

I know it is very difficult to find support as this disease is very different from Alzhmeirs and a caregiver can feel very alone. We do not fit in with Alzhmeirs support groups because of behavioral and safety issues with a person who is oriented to time and space and may have an excellent memory but very poor judgment and impulse control. I guess this is scary for others who are not dealing with a frontal dementia. We really need more Picks Support groups in our individual cities.

Just type in Picks Disease support or FTD support and you should find some online support sites.

Annie A

Kristine - My wife had FTD/MND and when she was on the Alzheimers drugs she had hallucinations. Once we took her off they stopped.

quote:

Originally posted by Kristine:
Thanks for responding. I have been in touch with the AFTD and they have been helpful. I have also reached out to the the Alzheimer's Association and they were very responsive. I hope to form a memory walk team this year and designate our pledges for FTD and Pick's Research. My mother has had some stange behavior for a couple of year's and it is progessing but she is very stable and manages ok on her own when my Dad is at work. She left work last year at 59 whcn she was diagnosed with Pick's at the Dent Institute in Western NY but little scheduling has been done for follow-up or a plan for managing her illness outside of visits to her GP. She is currently on an Alzheimer's drug and is now having hallucinations. I am not sure if this is a common symptom of the illness, or of the medication?

Hello to all. My father was recently diagnosed with Pick's disease. This is a horrid disease that until my dad was diagnosed I had never even heard of. We are still in the early stages of figuring out what to do, he has only had one neuropsych evaluation so far. I am having difficulties getting him in to see neurologists. I am looking for any information and suggestions that anyone can give me. Does anyone know how to determine what stage of the disease he is in? Also, he seems to be deteriorating VERY rapidly lately. Every day he goes downhill. Is this normal?

Thanks for your help!

Hi Kristine,

My husband (53)was diagnosed at the Dent Institute last December also and continues to see his neurologist at the center every 2-3 mos. It is very important to see a neuro rather than a GP because they are the most current on treatments. My husband does not hallucinations yet but it is common. He does have paranioa that rears it's ugly head occassionaly.

If you are in the Buffalo area, maybe we could do the walk together.

quote:

Originally posted by Kristine:
Thanks for responding. I have been in touch with the AFTD and they have been helpful. I have also reached out to the the Alzheimer's Association and they were very responsive. I hope to form a memory walk team this year and designate our pledges for FTD and Pick's Research. My mother has had some stange behavior for a couple of year's and it is progessing but she is very stable and manages ok on her own when my Dad is at work. She left work last year at 59 whcn she was diagnosed with Pick's at the Dent Institute in Western NY but little scheduling has been done for follow-up or a plan for managing her illness outside of visits to her GP. She is currently on an Alzheimer's drug and is now having hallucinations. I am not sure if this is a common symptom of the illness, or of the medication?