Below is a copy of an email I sent on Friday to a University that studies dementias. Thought some people on here might relate to my frustration and take heart from the fact that I am at least trying to get answers....
Dear Sir/Madam,
I have contacted your University before when investigating the idea of donating my father's brain to science when he has passed away (that sounds terrible in writing) and I greatly appreciated the information that was provided to me on that occasion.
Today however I have another question that I am hoping you can help me with. I don't know why it bothers me but I am continually frustrated with the perceptions society has of Alzheimers and by all of the information sheets on Alzheimers and by my own expectations of what Alzheimers disease is, because none of it even seems to come close to describing what has happened to my father. This evening I found a link to your university website, specifically Dr [Name deleted]'s details when investigating the idea that my father does not in fact have Alzheimers at all but instead has been wrongly diagnosed as he is in fact suffering from frontotemporal lobar degeneration.
I know that it probably really doesn't matter, as there is no treatment that can help him and it is too late for such things now anyway (Dad is in his 10th year this year since diagnosis). But if someone could just explain to me why he isn't like other Alzheimers patients, or tell me that actually he is like other Alzheimers patients but its just that society doesn't properly inform people like me of the real symptoms...it would help immensely as I would I feel be more accepting of my father's condition and not constantly worry that more could be done for him, that his doctors have misdiagnosed him...Also it might actually be easier to tell people that he has FTLD as they won't have the perceptions of his condition then that are so way off the mark.
So what I want to know is (and no I can't get decent answers from the doctors here in [my home town]...some have even said that as I (and my family) have more time to devote to researching Dad's rarer early onset condition, we will often know more than them on the topic....), based on Dad's symptoms which are/were:
* Dad was diagnosed at about age 54, although he and my mother began seeing doctors when he was 52 as they recognised something was wrong;
* Dad's first major recognition of something being wrong was when he went to give an annual speech to his employees and got up in front of them and then just went blank and could not recover his thoughts so that he had to just walk away with no explanation;
* In retrospect, my father who had always been rather rigid in his ways, became more and more what probably could be called obsessive compulsive about daily rituals in the 10yrs prior to his diagnosis;
* Dad also told us that he first personally became aware of something being wrong when he just wasn't able to understand the stuff he read for his work as easily as he used to;
* Dad never really seemed to have memory problems like we expected he would based on typically quoted Alzheimer's symptoms, he didn't get sentimental about old memories and forget new things...he did used to do little things that I put down to memory problems tho, like leaving taps on...but he never left them on full, it was as though he performed the process of turning the tap off, but didn't finish the process of turning it off completely. He also appeared to 'forget' how to eat sandwiches (pulling them apart instead of holding them together), 'forget' how to use a knife and fork, like using a knife the wrong way around, upside down.
* Dad can no longer talk at all (occasionally words come out, but most often just sounds) He appears to be trying to talk and sometimes there is even expression that suggests he is asking questions, or stating something, but generally except on the odd exciting occasion, no real words are said. He does say 'what' still quite often, perhaps a reflex, reacting to his confusion, more so than a conscious choice of word.
* My husband who met Dad after his diagnosis states that he has no memory of my father ever having a conversation in his presence, that over the last 6yrs, he only ever heard dad say one or two words.
* Dad has not really said anything that I could be sure he said intentionally since the end of 2003 (i.e. from this point on, I could no longer verify one off phrases that he came out with, as they were only that from this point on, and asking him to say it again or if he meant it would not be responded to);
* Dad went through a long period of apathy about his disease that really upset my mother, he didn't care;
* Dad then went through a really bad period of depression where he would just burst into tears and lie on the floor in tears (something he never ever would have done before the disease no matter how distraught);
* Dad also had a very brief (thankfully) period where he wanted to walk around naked...this did not last long however;
* Dad lost control of his bladder I think in about 2002/3 (diagnosis was in 1997);
* Dad definetly had neither bladder or bowel control from end of 2003;
* Dad did seem to have some visual or spatial problems as far back as 2003 as he used to step over cracks and shadows...for some strange reason, he went through about 2yrs of not appearing to be able to see what was on tv, but in the last year he appears to have very strangely regained this ability and has held onto it for over a 6months now and doesn't step over cracks anymore. He appears to understand when I tell him we are going to walk up or down a hill and alters his gait accordingly.
* Dad can't do anything himself except walk once someone stands him up, and sit down and stand up with some assistance...otherwise bathing, eating, dressing, being put to bed etc is all done by caregivers. He lost the ability to feed himself last and even now occasionally with a lot of perserverance he can get a biscuit to his mouth if I place it in his hand...but again this might be reflex, but it does appear to me that he concentrates on trying to get it to his mouth some days. He has required full care since again around late 2003;
* Dad has had one massive seizure (where he ended up unconscious) otherwise he has regular myoclonic jerking usually small but sometimes severe enough to make him fall over;
Can someone tell me if this is the normal way of an Alzheimer's sufferer's progression and if so why is there no information out there to tell us to expect this stuff? If it is not normal for Alzheimer's sufferers...does it fit in with something else such as FTLD? Lastly, is my whole question pointless, as the diagnosis can't be made for sure without autopsy...or can doctors make a differential diagnosis, i.e. can they say for example as he has the defining symptoms of FTLD but not all of the AD ones and thus will be diagnosed with FTLD instead until at least his death proves otherwise.
If a differentiating diagnosis can be made, how can I get someone with the appropriate qualifications to be able to consider his scans and symptoms to make such a diagnosis...or is it too late to do this now. Since Dad went full time into a care home almost 2yrs ago, he no longer seems to be considered worthy of a specialist's attention, I guess they figure a general doctor is able to deal well enough with his dying. Is there anyone who would be interested in studying Dad's condition and therefore could investigate his unique symptoms in light of what is considered expected for his diagnosis?
People keep telling me that his diagnosis is not important as it is too late to do anything about. But if FTLD is different to AD then I would think it would be important to ensure that it gets recognised when it exists to encourage more funding and more research go towards it, and not just to AD. And if this is just AD then I need an authority to tell me this is normal Alzheimers symptoms so that I can increase awareness of the truth of this disease.
Appreciate any assistance or advice you can provide,
Regards,
Natalie [Surname deleted]
Dear Sir/Madam,
I have contacted your University before when investigating the idea of donating my father's brain to science when he has passed away (that sounds terrible in writing) and I greatly appreciated the information that was provided to me on that occasion.
Today however I have another question that I am hoping you can help me with. I don't know why it bothers me but I am continually frustrated with the perceptions society has of Alzheimers and by all of the information sheets on Alzheimers and by my own expectations of what Alzheimers disease is, because none of it even seems to come close to describing what has happened to my father. This evening I found a link to your university website, specifically Dr [Name deleted]'s details when investigating the idea that my father does not in fact have Alzheimers at all but instead has been wrongly diagnosed as he is in fact suffering from frontotemporal lobar degeneration.
I know that it probably really doesn't matter, as there is no treatment that can help him and it is too late for such things now anyway (Dad is in his 10th year this year since diagnosis). But if someone could just explain to me why he isn't like other Alzheimers patients, or tell me that actually he is like other Alzheimers patients but its just that society doesn't properly inform people like me of the real symptoms...it would help immensely as I would I feel be more accepting of my father's condition and not constantly worry that more could be done for him, that his doctors have misdiagnosed him...Also it might actually be easier to tell people that he has FTLD as they won't have the perceptions of his condition then that are so way off the mark.
So what I want to know is (and no I can't get decent answers from the doctors here in [my home town]...some have even said that as I (and my family) have more time to devote to researching Dad's rarer early onset condition, we will often know more than them on the topic....), based on Dad's symptoms which are/were:
* Dad was diagnosed at about age 54, although he and my mother began seeing doctors when he was 52 as they recognised something was wrong;
* Dad's first major recognition of something being wrong was when he went to give an annual speech to his employees and got up in front of them and then just went blank and could not recover his thoughts so that he had to just walk away with no explanation;
* In retrospect, my father who had always been rather rigid in his ways, became more and more what probably could be called obsessive compulsive about daily rituals in the 10yrs prior to his diagnosis;
* Dad also told us that he first personally became aware of something being wrong when he just wasn't able to understand the stuff he read for his work as easily as he used to;
* Dad never really seemed to have memory problems like we expected he would based on typically quoted Alzheimer's symptoms, he didn't get sentimental about old memories and forget new things...he did used to do little things that I put down to memory problems tho, like leaving taps on...but he never left them on full, it was as though he performed the process of turning the tap off, but didn't finish the process of turning it off completely. He also appeared to 'forget' how to eat sandwiches (pulling them apart instead of holding them together), 'forget' how to use a knife and fork, like using a knife the wrong way around, upside down.
* Dad can no longer talk at all (occasionally words come out, but most often just sounds) He appears to be trying to talk and sometimes there is even expression that suggests he is asking questions, or stating something, but generally except on the odd exciting occasion, no real words are said. He does say 'what' still quite often, perhaps a reflex, reacting to his confusion, more so than a conscious choice of word.
* My husband who met Dad after his diagnosis states that he has no memory of my father ever having a conversation in his presence, that over the last 6yrs, he only ever heard dad say one or two words.
* Dad has not really said anything that I could be sure he said intentionally since the end of 2003 (i.e. from this point on, I could no longer verify one off phrases that he came out with, as they were only that from this point on, and asking him to say it again or if he meant it would not be responded to);
* Dad went through a long period of apathy about his disease that really upset my mother, he didn't care;
* Dad then went through a really bad period of depression where he would just burst into tears and lie on the floor in tears (something he never ever would have done before the disease no matter how distraught);
* Dad also had a very brief (thankfully) period where he wanted to walk around naked...this did not last long however;
* Dad lost control of his bladder I think in about 2002/3 (diagnosis was in 1997);
* Dad definetly had neither bladder or bowel control from end of 2003;
* Dad did seem to have some visual or spatial problems as far back as 2003 as he used to step over cracks and shadows...for some strange reason, he went through about 2yrs of not appearing to be able to see what was on tv, but in the last year he appears to have very strangely regained this ability and has held onto it for over a 6months now and doesn't step over cracks anymore. He appears to understand when I tell him we are going to walk up or down a hill and alters his gait accordingly.
* Dad can't do anything himself except walk once someone stands him up, and sit down and stand up with some assistance...otherwise bathing, eating, dressing, being put to bed etc is all done by caregivers. He lost the ability to feed himself last and even now occasionally with a lot of perserverance he can get a biscuit to his mouth if I place it in his hand...but again this might be reflex, but it does appear to me that he concentrates on trying to get it to his mouth some days. He has required full care since again around late 2003;
* Dad has had one massive seizure (where he ended up unconscious) otherwise he has regular myoclonic jerking usually small but sometimes severe enough to make him fall over;
Can someone tell me if this is the normal way of an Alzheimer's sufferer's progression and if so why is there no information out there to tell us to expect this stuff? If it is not normal for Alzheimer's sufferers...does it fit in with something else such as FTLD? Lastly, is my whole question pointless, as the diagnosis can't be made for sure without autopsy...or can doctors make a differential diagnosis, i.e. can they say for example as he has the defining symptoms of FTLD but not all of the AD ones and thus will be diagnosed with FTLD instead until at least his death proves otherwise.
If a differentiating diagnosis can be made, how can I get someone with the appropriate qualifications to be able to consider his scans and symptoms to make such a diagnosis...or is it too late to do this now. Since Dad went full time into a care home almost 2yrs ago, he no longer seems to be considered worthy of a specialist's attention, I guess they figure a general doctor is able to deal well enough with his dying. Is there anyone who would be interested in studying Dad's condition and therefore could investigate his unique symptoms in light of what is considered expected for his diagnosis?
People keep telling me that his diagnosis is not important as it is too late to do anything about. But if FTLD is different to AD then I would think it would be important to ensure that it gets recognised when it exists to encourage more funding and more research go towards it, and not just to AD. And if this is just AD then I need an authority to tell me this is normal Alzheimers symptoms so that I can increase awareness of the truth of this disease.
Appreciate any assistance or advice you can provide,
Regards,
Natalie [Surname deleted]