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Disappointed by your lack of responses

Hi Barry,
You need to see a GP.
Some forms of dementia are extremely variable in the early stages, I know this from a sibling who has exhibited similar symptoms. Perhaps you've eliminated this possibility? I hope you have.
For those who do have to face such a situation there is medication which can help for a time.
regards
D
 
That's it for me thanks!

I really was much happier with your help over the last day or two and had planned to sit down and post some replies until I read "Patch's" response from yesterday, and before my visit with a neurologist this morning. I am actually having trouble writing this as my hands are shaking because I feel so upset. The news this morning was bad enough but Patch's response makes me really angry. It appears my symptoms have nothing to do with diabetes but are, given my family history, most likely the early stages of Lewy Body Dementia, which very often goes hand in hand with Parkinson's at some stage (I did mention in my original post that my twin brother has Parkinson's). It seems that our father may have had a milder version of Parkinson's or Lewy Body Dementia. Both illnesses can only be confirmed by autopsy but we had no real indication when he was alive that my father may have had either one, so we never asked for them to be investigated. Sometimes Lewy Body Dementia develops after Parkinson's Disease has already established itself. Sometimes it precedes Parkinson's by two or three years. This seems to be the case with me. My brother does have diabetes and I was thinking (and obviously hoping) that the symptoms we are sharing may "only" be diabetes, which is why I posted my question i.e. "Crashing out - is this a part of diabetes?" But, now it seems we're both sharing Dementia symptoms. Yes, yes, yes - I wanted to know if people with diabetes crashed out and had the same symptoms as I did if only to eliminate the possibility. Unfortunately, that's been eliminated. I wish now that everybody with diabetes shared these symptoms (and no, I don't mean that of course) but for my brother, my wife and myself, it would be the preferable option.

Yesterday I had two blood tests done to check for diabetes. One before breakfast, the other an hour and a half after my mid-day meal. My HbA1c is at 5%. So I don't have diabetes.

In six weeks I have to travel to a major teaching hospital (I don't live in the UK) to see a neurologist who specialises in Lewy Body Dementia. So, to the poster "lindisfel" - thanks for your reply. Looks like you were right. I wish you weren't.

As I say, I was going to reply to many of the individual responses I've had but didn't know what I was going to say, this being even more difficult after today's talk with the neurologist. But I must say this . . .

. . . Patch, you are unbelievable. As a well-practised Googler, perhaps you should Google "Lewy Body Dementia". I have on many occasions and, in short, I think I'll swap you diabetes for dementia any day. All those clever "quotes" on your post are so "insightful" and so far off the mark it's hard to describe how I feel. Isn't this a forum where members are meant to help and support people who have concerns about their health, especially first-time posters?? You say if I want help from this community I should become a part of this community. I tried to become a part of this community by registering and posting a question. How else should I have done it? If my problems in the end were related to diabetes, I would probably have posted many more times in the future. I would have discussed many of the topics that I see are being discussed. I came here looking for help and advice and did get helpful comments from people who clearly do care, although I admit it was a slower response than I was hoping for. I understand now that, as some of those who replied have said, perhaps I didn't get responses because my symptoms are not typical diabetes symptoms. That's fine with me and obviously I now know why they aren't. But I just wanted to know. And I do genuinely thank those who replied. Your response though was in no way helpful or caring. How can you get away with that sort of response to someone who needs support, especially a first-time poster?? I'm not going to take the time to look at your previous posts and replies but I wouldn't be surprised to see that many of them may be of the same tone. One thing I've learned, and perhaps you need to too, is never to so gleefully belittle a stranger's problems in any way because you never know what they are going through in their lives.

(This post is getting to be much longer than I'd planned - sorry but I have to clear this up. My hand's have stopped shaking anyway)

Patch - you very wittily stated that "I don't know how to use Google". I've LIVED on Google for the past two years trying to find out what my symptoms could possibly be and to learn everything I can to help my brother too. How would you even know I that don't know how to use Google? That's a serious question. The simple answer is that you just don't. So you shouldn't make such sly comments. In fact, below is one of the many websites and forums I've been "googling" for some time. It's the Lewy Body Dementia Association forum. I'd be surprised if you do. To quote your last response . . .

. . . "But Google SHOULD be the first stop. For me, it's always been a case of reading whatever I can lay my hands on, and then having discussions here before making up my mind".

Read the forum and then discuss away! Here's the link.

http://www.lbda.org/community/forum/ind ... b8ee8fbc50

One last thing. All my doctor's have put my symptoms down to stress and they've been wrong. And I knew they were wrong. I have had to eliminate many other possibilities virtually on my own and had to research them all from scratch to do so. I'm absolutely certain many of you will have had similar experiences. I KNOW how I've felt over the past two years. I KNOW my body and my brain have been changing in ways I wasn't happy with. But the thing is that Lewy Body Dementia takes a slow course and it's very hard to get a confirmed diagnosis simply because the symptoms overlap with many other illnesses and conditions.

So that's all I have to say. I'm sorry if, in any way, I've disrupted the course of the forum. I'm angry because of Patch and his replies. He certainly hasn't helped and I really hope he finds better things to do now than pick away at this post, though if he wants to he can go ahead. I'm not really concerned. I am grateful to all of you who, I'm sure, would have helped me otherwise and, no doubt, do so for others on a very regular basis.

Thanks.
 
My goodness! Iv jus stumbled upon this. I too have never experienced those symptoms but as uv ruled out diabetes I suppose that's a silly point. I'm terribly sorry for ur experience. I work in a dementia unit and know how horrendous a disease it is. I jus want to wish you all the best. Lots of love xx


Sent from the Diabetes Forum App
 
Patch said:
Barry said:
Well, I have to say that I thought I'd get more than one response from such a large diabetes community.
Click to expand...
Translation:
Well, I have to say that I thought I could just make one detailed post and have everyone do all of my research for me.
Click to expand...

Barry said:
I spent a lot of time putting together a question on matters that really are worrying me
Click to expand...
Translation:
I hoped I could spend 10 minutes getting all of my concerns written down, and when I returned days later all of my work would be done for me
Click to expand...

Barry said:
and only asked for advice from those who may have told me whether or not my symptoms were in any way to do with diabetes.
Click to expand...
Translation:
I don't know how to use Google
Click to expand...

Barry said:
Thanks to the one person who found a moment to reply.
Click to expand...
Translation:
Thanks to the one person who found a moment to reply.
Click to expand...

That sounds completely genuine - I'll give you that one. :wink:

If you want help from a community, you have to be part of the community. Do stick around - all of your questions WILL be answered, whether directly or indirectly. There's plenty to read around here! :thumbup:
Click to expand...


Brilliant response!
It can be frustrating when one does not get the replies or recognition.
That said, many people are becoming hard wired to expect an instant answer to their queries, emails, Facebook status updates etc.

Now what was the question again?


Sent from the Diabetes Forum App
 
barry kafnay said:
That's it for me thanks!

I really was much happier with your help over the last day or two and had planned to sit down and post some replies until I read "Patch's" response from yesterday, and before my visit with a neurologist this morning. I am actually having trouble writing this as my hands are shaking because I feel so upset. The news this morning was bad enough but Patch's response makes me really angry. It appears my symptoms have nothing to do with diabetes but are, given my family history, most likely the early stages of Lewy Body Dementia, which very often goes hand in hand with Parkinson's at some stage (I did mention in my original post that my twin brother has Parkinson's). It seems that our father may have had a milder version of Parkinson's or Lewy Body Dementia. Both illnesses can only be confirmed by autopsy but we had no real indication when he was alive that my father may have had either one, so we never asked for them to be investigated. Sometimes Lewy Body Dementia develops after Parkinson's Disease has already established itself. Sometimes it precedes Parkinson's by two or three years. This seems to be the case with me. My brother does have diabetes and I was thinking (and obviously hoping) that the symptoms we are sharing may "only" be diabetes, which is why I posted my question i.e. "Crashing out - is this a part of diabetes?" But, now it seems we're both sharing Dementia symptoms. Yes, yes, yes - I wanted to know if people with diabetes crashed out and had the same symptoms as I did if only to eliminate the possibility. Unfortunately, that's been eliminated. I wish now that everybody with diabetes shared these symptoms (and no, I don't mean that of course) but for my brother, my wife and myself, it would be the preferable option.

Yesterday I had two blood tests done to check for diabetes. One before breakfast, the other an hour and a half after my mid-day meal. My HbA1c is at 5%. So I don't have diabetes.

In six weeks I have to travel to a major teaching hospital (I don't live in the UK) to see a neurologist who specialises in Lewy Body Dementia. So, to the poster "lindisfel" - thanks for your reply. Looks like you were right. I wish you weren't.

As I say, I was going to reply to many of the individual responses I've had but didn't know what I was going to say, this being even more difficult after today's talk with the neurologist. But I must say this . . .

. . . Patch, you are unbelievable. As a well-practised Googler, perhaps you should Google "Lewy Body Dementia". I have on many occasions and, in short, I think I'll swap you diabetes for dementia any day. All those clever "quotes" on your post are so "insightful" and so far off the mark it's hard to describe how I feel. Isn't this a forum where members are meant to help and support people who have concerns about their health, especially first-time posters?? You say if I want help from this community I should become a part of this community. I tried to become a part of this community by registering and posting a question. How else should I have done it? If my problems in the end were related to diabetes, I would probably have posted many more times in the future. I would have discussed many of the topics that I see are being discussed. I came here looking for help and advice and did get helpful comments from people who clearly do care, although I admit it was a slower response than I was hoping for. I understand now that, as some of those who replied have said, perhaps I didn't get responses because my symptoms are not typical diabetes symptoms. That's fine with me and obviously I now know why they aren't. But I just wanted to know. And I do genuinely thank those who replied. Your response though was in no way helpful or caring. How can you get away with that sort of response to someone who needs support, especially a first-time poster?? I'm not going to take the time to look at your previous posts and replies but I wouldn't be surprised to see that many of them may be of the same tone. One thing I've learned, and perhaps you need to too, is never to so gleefully belittle a stranger's problems in any way because you never know what they are going through in their lives.

(This post is getting to be much longer than I'd planned - sorry but I have to clear this up. My hand's have stopped shaking anyway)

Patch - you very wittily stated that "I don't know how to use Google". I've LIVED on Google for the past two years trying to find out what my symptoms could possibly be and to learn everything I can to help my brother too. How would you even know I that don't know how to use Google? That's a serious question. The simple answer is that you just don't. So you shouldn't make such sly comments. In fact, below is one of the many websites and forums I've been "googling" for some time. It's the Lewy Body Dementia Association forum. I'd be surprised if you do. To quote your last response . . .

. . . "But Google SHOULD be the first stop. For me, it's always been a case of reading whatever I can lay my hands on, and then having discussions here before making up my mind".

Read the forum and then discuss away! Here's the link.

http://www.lbda.org/community/forum/ind ... b8ee8fbc50

One last thing. All my doctor's have put my symptoms down to stress and they've been wrong. And I knew they were wrong. I have had to eliminate many other possibilities virtually on my own and had to research them all from scratch to do so. I'm absolutely certain many of you will have had similar experiences. I KNOW how I've felt over the past two years. I KNOW my body and my brain have been changing in ways I wasn't happy with. But the thing is that Lewy Body Dementia takes a slow course and it's very hard to get a confirmed diagnosis simply because the symptoms overlap with many other illnesses and conditions.

So that's all I have to say. I'm sorry if, in any way, I've disrupted the course of the forum. I'm angry because of Patch and his replies. He certainly hasn't helped and I really hope he finds better things to do now than pick away at this post, though if he wants to he can go ahead. I'm not really concerned. I am grateful to all of you who, I'm sure, would have helped me otherwise and, no doubt, do so for others on a very regular basis.

Thanks.
Click to expand...


My late father died due to complications of LB dementia.
Now, unless things have developed, LB dementia can only be diagnosed at a post mortem.
As you are quite erudite etc, I would be VERY surprised if you DO have L B dementia, that said the symptoms can and often vary..
One moment my dad would appear to be reasonably fine, the next he would be off with the fairies.
If you are having night terrors, hallucinations ( often seeing creatures) and displaying Parkinson's type of symptoms...then possibly.

I wish you well....but self diagnosis is no diagnosis and the stress that this can create wont help.



Sent from the Diabetes Forum App
 
Hi Barry, :)

I think you should now be pleased with the response from this forum including the one's from Patch,

My point being when you said your were much happier and thanked us for the replies, means a lot for people that are in a similar situation that your experiencing yet can't express their thoughts and worry as well as you have done.

But reading all the replies and your Topic, does help everyone whether good or bad.

Your are very brave and I wish you all the best.

Roy, :)
 
This is going to be my last post on the forum, although I know I'll be tempted to keep responding.

To DaveNN. Thanks for your response.

You've assumed that I'm erudite and as such probably don't have LBD. But it took me almost two and a half hours to write my last post as I had to keep on making corrections and retype the words as I went along. Not too long ago it would have taken me 20 minutes. I could tell you many more ways in which my actions and responses have slowed down. And yes, as you say, the symptoms can and often vary. It's one of the identifying features of LBD as opposed to any other form of dementia. One could be as bright as a button one moment and the next not be able to make sense of your surroundings and physically and mentally crash. You said your father would at one moment be reasonably fine and the next be off with the fairies (if you read my original post this is basically how I described my symptoms). I should imagine this trait would have developed slowly over time with your father as it does with many people with LBD. I obviously have no idea but, if your father also suffered from night terrors and hallucinations, I should think they were when he was at an advanced stage and not in the early stages. As you say, self diagnosis is no diagnosis. It takes, apparently, an average of three visits to three different neurologists to finally obtain a diagnosis of LBD. So, one often has to do the leg-work without the help of non-specialist, and even specialist doctors and, in my opinion, the only way to get to a probable diagnosis is by a process of elimination. Eliminating diabetes for me was just one for example.

One more thing. Do you really think that Patch's response is a brilliant one? He suggested I wanted everyone else to do my research for me and sit back and wait for all the answers to my problems, that I simply sat down and wrote a 10 minute post and that was all. It's not that he couldn't be further away from the truth in my case, it's just not what I'd imagine anyone would expect to see when visiting this, or any similar, forums. Is a "one-size-fits-all" answer like this appropriate? Isn't it just "bad press" for the forum? I still can't see from reading my original post how he came to these conclusions anyway. You said that many people are becoming hard wired to expect an instant answer to their queries. Maybe, but NOT ALL. There's a phrase that always comes to mind to me, and I'm not pompous, and am not preaching, but the phrase is "First, do no harm". Patch has no idea how much damage his words caused.

To MCMXXLIII - thanks for the link. I'll take a look at it later today.

To Samantha13 and izzzi - thanks for your good wishes.

Same goes to you all.
 
barry kafnay said:
This is going to be my last post on the forum, although I know I'll be tempted to keep responding.

To DaveNN. Thanks for your response.

You've assumed that I'm erudite and as such probably don't have LBD. But it took me almost two and a half hours to write my last post as I had to keep on making corrections and retype the words as I went along. Not too long ago it would have taken me 20 minutes. I could tell you many more ways in which my actions and responses have slowed down. And yes, as you say, the symptoms can and often vary. It's one of the identifying features of LBD as opposed to any other form of dementia. One could be as bright as a button one moment and the next not be able to make sense of your surroundings and physically and mentally crash. You said your father would at one moment be reasonably fine and the next be off with the fairies (if you read my original post this is basically how I described my symptoms). I should imagine this trait would have developed slowly over time with your father as it does with many people with LBD. I obviously have no idea but, if your father also suffered from night terrors and hallucinations, I should think they were when he was at an advanced stage and not in the early stages. As you say, self diagnosis is no diagnosis. It takes, apparently, an average of three visits to three different neurologists to finally obtain a diagnosis of LBD. So, one often has to do the leg-work without the help of non-specialist, and even specialist doctors and, in my opinion, the only way to get to a probable diagnosis is by a process of elimination. Eliminating diabetes for me was just one for example.

One more thing. Do you really think that Patch's response is a brilliant one? He suggested I wanted everyone else to do my research for me and sit back and wait for all the answers to my problems, that I simply sat down and wrote a 10 minute post and that was all. It's not that he couldn't be further away from the truth in my case, it's just not what I'd imagine anyone would expect to see when visiting this, or any similar, forums. Is a "one-size-fits-all" answer like this appropriate? Isn't it just "bad press" for the forum? I still can't see from reading my original post how he came to these conclusions anyway. You said that many people are becoming hard wired to expect an instant answer to their queries. Maybe, but NOT ALL. There's a phrase that always comes to mind to me, and I'm not pompous, and am not preaching, but the phrase is "First, do no harm". Patch has no idea how much damage his words caused.

To MCMXXLIII - thanks for the link. I'll take a look at it later today.

To Samantha13 and izzzi - thanks for your good wishes.

Same goes to you all.
Click to expand...

Being a very old hand on online forums, I have learnt that if one is a little sensitive ( as an example) it is often wise to avoid posting a thread and then have a bit of a whine as no one has responded.
Also, and whilst this forum is quite gentle, it has all manner of characters who will respond to a post as they see fit.
I enjoyed patches' response for what it was... Cutting, witty and my kind of humour.
I am quite certain that no offence was meant...

My late dad declined to a condition way past the usual LBD symptoms in a matter of weeks of the night terrors and hallucinations etc
Pre senile dementia and Parkinson's was diagnosed, and we was prescribed accordingly... We all knew full well that the meds could screw him up and they did within 2 weeks...he went into a home and never came out, except In a box.

Like I have said, I'm not at all sure that you have LBD..but if you do, my sincere advice is to get all your ducks in a row now.
If you have relatives suitable to be powers of attorney, then sort it.





Sent from the Diabetes Forum App
 
Barry - I know you may not still be reading, but I wanted to wish you all the best. My father also died from LBD (well, he died from pneumonia, but he had LBD). I would say that his predominant symptoms were hallucinations, mostly visual. He was particularly bad with patterned carpets and curtains - he thought they contained snakes. He would also sometimes see people who weren't there and talk to them. He did have fluctuating levels of dementia, but it wasn't like he "zoned out", it was more like sometimes he would make complete sense and talk normally and other times he wouldn't. He did have Parkinson's too, but not super-severe, at least not until the end. He had a tremor, and a shuffling walk, but the LBD was more a feature.

When I read your symptoms I can't say that they raised a flash of recognition in me. But obviously we've only got what you've written to go on.


Sent from the Diabetes Forum App
 
Finzi said:
Barry - I know you may not still be reading, but I wanted to wish you all the best. My father also died from LBD (well, he died from pneumonia, but he had LBD). I would say that his predominant symptoms were hallucinations, mostly visual. He was particularly bad with patterned carpets and curtains - he thought they contained snakes. He would also sometimes see people who weren't there and talk to them. He did have fluctuating levels of dementia, but it wasn't like he "zoned out", it was more like sometimes he would make complete sense and talk normally and other times he wouldn't. He did have Parkinson's too, but not super-severe, at least not until the end. He had a tremor, and a shuffling walk, but the LBD was more a feature.

When I read your symptoms I can't say that they raised a flash of recognition in me. But obviously we've only got what you've written to go on.


Sent from the Diabetes Forum App
Click to expand...

Hi Finzi and hi Barry if you are reading this.

Last year my very elderly dad seemed 'different' to me, not my dad. He had rested shakes in one hand, he seemed very confused at times and kept saying he didn't feel well, but couldn't explain what it was. He was more sleepy,unsteady on his feet and once I found him sitting on a chair in his small kitchen by the sink! I had to help him up( as he was very unsteady) and take him into the lounge. Phoned his doctor and went on line to the symptom checker and lewys demetia came up. I was so worried when I saw that,but I thought maybe its not that and when his doctor checks himout he will be ok.

After blood tests and his doctor taking him off of Ramipril, for high blood presure, after a few days the change was remarkable. He was back to his old self again. I hadn't even thought a small medication like Ramipril, could affect a person so much. He is still off the Ramipril and his doctor takes regular blood tests to make sure his kidneys and blood pressure are ok.

When I read barry's post I didn't even think about my dads symptoms then, probably because I felt it was such a bad time and then put it to the back of my mind.

As for replies and responses to OP threads. He felt he had to say something( as SO many do and have done in the past) and others have replied, some positive and some not with much empathy or understanding, but that's forums :roll: its often best to ignore some posts. If people are to come back or to post again, they would, I'm sure, want to feel welcomed and not isolated or feel invisible.

Barry, I truly wish you well and I hope your life ahead doesn't turn out to be a negative one.

All the best RRB
 
Hi Robinbreast,

So nicely put, hope everything is ok with your Dad.

I have often written things and sent, then after seeing other threads I see things a lot differently and think how wrong yet at the time it was the way I felt.(live and learn I suppose).

You made a point about Ramipril which I find to be very interesting as I take Ramipril.

After blood tests and his doctor taking him off of Ramipril, for high blood presure, after a few days the change was remarkable. He was back to his old self again. I hadn't even thought a small medication like Ramipril, could affect a person so much. He is still off the Ramipril and his doctor takes regular blood tests to make sure his kidneys and blood pressure are ok.
Click to expand...

Thanks it has given me some food for thought as I have experienced a rather strange "trip up" a few weeks ago.

Roy.
 
izzzi said:
Hi Robinbreast,

So nicely put, hope everything is ok with your Dad.

I have often written things and sent, then after seeing other threads I see things a lot differently and think how wrong yet at the time it was the way I felt.(live and learn I suppose).

You made a point about Ramipril which I find to be very interesting as I take Ramipril.

After blood tests and his doctor taking him off of Ramipril, for high blood presure, after a few days the change was remarkable. He was back to his old self again. I hadn't even thought a small medication like Ramipril, could affect a person so much. He is still off the Ramipril and his doctor takes regular blood tests to make sure his kidneys and blood pressure are ok.
Click to expand...

Thanks it has given me some food for thought as I have experienced a rather strange "trip up" a few weeks ago.

Roy.
Click to expand...

Thank you Roy for your good wishes regarding my dad, his GP says he will oulive us both! very thoughtful :)

I too take Ramipril,1mg, because I had a small amount of protein in my kidneys and now my kidneys are fine, but only ever had extemley high BP once, in hospital :shock: ( I must admit I was scared at the time :shock: )

Best wishes RRB
 
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