Hi, I'd like to help you with your question.
We have worked together before so I am familiar with your situation. I assume that you are talking about the frontotemperal dementia.
Are you currently on medication? What kinds of treatments are you receiving through your doctor? Can you tell me more about how you are feeling?
Randi, I am sorry. It is understandable that you would feel the way you do. Fear and anxiety go along with any illness but when your illness is chronic, there is a deeper meaning to the fear and anxiousness.
How much support do you have? It is essential that you do not face this alone. Services such as caregivers, nurses and other professionals can help. Support groups on line can help as well. Here are some links to help:
Loneliness and the lack of others who understand is a part of chronic illness. The support will help give you others to talk with and help you feel less alone. You can express how you feel to others who understand.
You may also want to consider asking your doctor about being a part of clinic trials for new medication. You may find that the new medication helps you and you can probably get the medication for free. This will give you some hope as well. Here is a link to talk with your doctor about:
I hope this has helped you. I know this is difficult at best and you are struggling. There is no answer for Pick's Disease, but getting as much as you can out of your caregivers and trying the trials may give you some comfort through such a horrific experience.
Let me know if I can do more to help,Kate
Thank you. 5 years ago I woke up at hospitel completly well. I happend one wekend later also. That is strange. I am not sure if my diagnose is right, but my doctor reject it. I think I have stronger symtoms than others. Is it possible to get better?
It may be that your diagnosis is incorrect. Have you been able to get a second opinion? Doctors can be wrong and it does not hurt to be sure that you do have Pick's. It is a serious diagnosis and not one you can just recover from, so your experience of waking up without it is odd. Maybe try a specialist in Pick's disease for your second opinion. That way, you know the doctor has experience and will be able to diagnose you correctly.
There really is no difference as far as I can tell. The only thing is that Pick's is the old name and FTD is the newer name. It also has to do with classification of the different types of dementia within FTD. Here is a link to help describe it better. This link also provides more information about what solutions researchers are looking at to help people with FTD:
You may want to contact someone who specializes in FTD to see if there are other options for confirming your diagnosis. They would know all the methods used and they could also tell you if scanning gives you an accurate diagnosis.