Question Time for Carers... Week 3...Only 1 Question?

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
I’m continuing with the same theme of possible related events, leading to later onset of dementia. We have looked at key events prior to the onset of dementia, now we will look a lot further back, maybe decades.

I’ve been reading about research into devising ways to determine if someone can be tested for dementia, before the signs, or symptoms show. This seems to be all on the premise that the possible causes of dementia may have started years and possibly decades before any symptoms were noted.

We have all heard of the well known footballers and boxers that have developed later dementia. It seems obvious that continually heading a ball, or being punched, will damage the brain. However, there is no definitive proof that this is true. The cause of the original injury has long gone and only the onset of dementia remains. Often there seems to be no related cause.

In my case, doing a bit of research into my medical records and drawing a history line of my health life, it seems that an insect bite, that caused a major allergic reaction, that impacted heavy on my immune system, does seem to be the start of all my problems and leading to this final diagnosis of dementia. Now at the time, I was given treatment, which I believe was antihistamines. I was in France when this happened. I never recovered fully, but I was able to get on with my life. Later a doctor suggested a Lyme disease test be carried out. No positive results. The doctor then explained, ‘It is like a hit-and-run accident. Whatever caused the damage has gone and only the damage remains!’

This change my viewpoint dramatically. I had always thought I would find the cause and then be able to treat it, but now I realise I can only live with the damage.

This week’s question:

Looking back as far as you can, try to trace the significant things that happened ie, did they do anything that may have caused brain injury, such as sports, did they have any major illness, measles etc, any accident, fall or car crash, etc.

We all had knocks, bumps, coughs and colds, but it is that thing that had a major impact on that person's life, that I'm looking for and only you can evaluate that?

Question: If the person with dementia, had any significant event many years ago, please, briefly state the event and how many years before the person was diagnosed?

Examples: Car accident that caused head injury. 22 years
Lyme disease. 31 years

If there is no significant event throughout their life, just start, None

Many thanks for taking part!

Stay Safe and Keep Well!

Richard
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
None that I know of. Dad had a stroke in 2015 that’s when he was diagnosed. But I cannot say more than that as he has always been secretive so there may have been . But nothing I’m aware of.
 

MaggiB

New member
Apr 27, 2020
4
0
My husband suffered a serious heart attack in Scotland in 2003 and had to wait well over 6 months for the bypass op. On arrival at the hospital in Glasgow, early in the morning they put him under an anesthetic then realised they had forgotten to ask him to sign his permission - they had to wake him up again, immediately they applied the anesthetic again he was under for a very long time from morning until late evening. (They also accidently cut a main artery during the op and he nearly died - as the surgeon put it, it was a close call).

A surgeon in Edinburgh (not Jack's surgeon unfortunately), said he did not like to put folk on the heart bypass machine because of the effects of memory loss later in life. Years later in 2013 he suffered an ischemic attack and was hospitalised for 17 days here in France - will not go into great detail but he had serious problems with delerium whilst being confined and I feel that was the beginning of his vascular dementia journey. He was so bad after a colonoscopy check with anesthetic, in the same hospital during his stay, they actually had to put him in a straight jacket.
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi @TNJJ Thanks for the input. I guess there are quite a few where we just don't know.

Hi @MaggiB There does seem to be some correlation between any problems with heart problems and VD, but I suppose that is not that surprising!

I am interested in this, heart bypass machine and later memory loss! Do you have any more details?

Do you think there is a connection with his heart related problems and his later dementia?

Stay safe and keep well!

Richard
 

MaggiB

New member
Apr 27, 2020
4
0
Hi Richard

No sorry I cannot even tell you the name of the surgeon. My husband was called up for his bypass, when we arrived we were told the operation slot had been given to an emergency patient - very disappointed.

That was how it was that year for us, the ambulance who took him to hospital would not move him at the time of his attack, as there was only one ambulance man, we had to wait hours for another to arrive. I think his life was saved by our family doctor who gave him some drug at the time. To top it all they took all of the allotted time ie 6 months to actually perform the operation. In France when he was taken ill in 2013 (on New Years day as luck would have it) the french service sent out 2 ambulances with about 5 mins of my phone call.

I definitely do think there is a connection with his heart operation (long time under anesthetic and later the same within the french hospital system.) In the last 3 months he has deteriotated so much - I just cannot believe it, he is also blind now because of cataracts and that makes things so much worse. The doctor here has just prescribed an anti phycotic drug because he sees people etc, funny when he is blind. The drug is not working so far unfortunately.
 
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Sarasa

Volunteer Host
Apr 13, 2018
7,195
0
Nottinghamshire
Hi Richard,

My mother (vascular dementia and now maybe Alzheimer's) had a nasty fall about twenty years ago. Ended up in A&E with stiches in her head. I didn't notice anything seriously amiss until four years ago when a virus seemed to totally confuse her and she never really recovered back to how she was before. However I think the signs were there if I'd known how to look. Mother in Law also VD had a series of falls over two or three years, each one that seemed to contribute to a decline. After she became extra careful she seemed to improve in some ways, but now has started to decline again.
I had measles very, very badly when I was five. It damaged my hearing and now in my mid sixties I have very little of it left. If it caused brain damage I've yet to notice.
 

Janey B

Registered User
Aug 15, 2019
117
0
Northwest
My other half had a fall where he banged his head . He fell flat on our concrete path and hit his head really hard. Was not unconscious just really shook up so he went to A & E.
No treatment or investigations given.
He was 73, It was May 2015.
In January 2017 ( with hind site) there were changes in his behaviour i. e apathy but nothing to really put your finger on. The next 2 years were very difficult no real memory problems but major changes in his behaviour.
Attended the memory clinic in September 2019 and after investigations was diagnosed with Frontal lobe dementia. The psychiatrist said that his right temporal lobe was badly damaged and had he had an accident.
So would say the fall in 2015 was the cause of his dementia . He now has problems with his short term memory but the behavioural problems have reduced.
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Good Morning @Sarasa

It sounds as though your Mum is ticking more boxes and why the change in diagnosis. Do you think doctors get points for what dementia types? Just me being cynical for a change!?:rolleyes:

Your Mother in Law too, do you think the falls caused the start of the problems?

I think if you have a fall and bang your head, then there is going to be some damage to your brain cells. It is what happens after and the extent of the damage. Changes are slow, but there is more and more hope that we can stop decline, but what we do and the has be to a good thing!

Measles is one of those things I was thinking about asking in the QT4C. Did the person with dementia, ever have measles?

One of the problems is Encephalitis, swelling of the brain and I’ve wondered if this causes problems that maybe develop as dementia in later life.

As you know it can often damage the hearing. I’m around the same age and lost all my hearing in my right and now have little in my left. Shingles seems to be possible cause as it caused a lot of my physical problems now. They wanted me to have a cochleae implant, but I declined. Did have a BAHA fitted and I can send sounds straight to my head. Strange, but helps… maybe!

Keep going my friend, if you think you are ok and those close that know, think you are ok, then I think you are most likely ok! Tomorrow maybe a different matter, so keep active both physically and mentally and live well then there is ever reason to believe you will go on for a long long time! ?



Stay Safe and Keep Well!
Richard
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Good Morning @Janey B

I hear this a lot, ‘ I just couldn’t put my finger on it!’ This is the same for many carer’s and sufferer’s too. That something!?

Looking back and thinking if only… don’t beat yourself up, your didn’t know!

You think with head injures there may be a follow-up program, where you have to have a scan to check how things are and that there are no underlying developing problems.

Not surprised that the psychiatrist ask if he had an accident. I think more and more problems prior to dementia symptoms are looked for.

Good to hear he his doing ok, or as good as expected!


Stay Safe and Keep Well!
Richard
 

Littlebear

Registered User
Jan 6, 2017
133
0
Devon
My OH played rugby at quite a high level & I hate to think how many concussions he had. In those days you just continued playing if you could. Not like now. I am convinced that that is the cause of his FTD.

He was originally diagnosed (wrongly) with Alzheimer's in his early 60s. I had noticed changes, mainly in his personality, for at least 10 years before that. Then he started struggling with really basic things at work. He was a Finance Director so it was a very difficult time & he had to stop working. For a while he did voluntary work but eventually had to stop in 2015.

Six years on from diagnosis he is unable to speak coherently, has trouble eating & is on a soft diet. He can do little for himself. He now requires help dressing.

It's been so hard watching the mental & physical deterioration of my intelligent, funny, strong, fit, kind & gentle husband. There's nothing I wouldn't give to have him back.
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi @Littlebear

It seems that only in the last few years that rugby is addressing the health concerns that seem obvious. It was just thought of as a part of the game.

Interesting that he was first diagnosed with Alzheimer’s, but they must have not seen, or they were not aware of, the other signs and symptoms. Did they ask you much as it seems again that the person that already knew, you, wasn’t considered valuable.

There should be a lot more interaction between the medical team and those that are closest of all and I believe have far more insight than asking question, or drawing a clock. But this is me just ranting again!

So in his 50s you were noticing changes?

Was you husband aware of the problems?

Personality is an area that seems to come up again and again. It is my personality that has changed most. I don’t think I am the same me. There are two of me, the one that is sinking further back as if a diminishing character in my head and the me that people see now, that I’m slowly losing control of, or is taking control of me.

It always puts me in mind of an old film, ‘Invasion of the Body Snatchers.’

It is heart wrenching to hear this stories of loss. I think death must be easier to deal with.

I wish so much that I could make it all right!

My thoughts are with you both.

Stay Safe and Keep Well!
Richard
 

Littlebear

Registered User
Jan 6, 2017
133
0
Devon
I
Hi @Littlebear

It seems that only in the last few years that rugby is addressing the health concerns that seem obvious. It was just thought of as a part of the game.

Interesting that he was first diagnosed with Alzheimer’s, but they must have not seen, or they were not aware of, the other signs and symptoms. Did they ask you much as it seems again that the person that already knew, you, wasn’t considered valuable.

There should be a lot more interaction between the medical team and those that are closest of all and I believe have far more insight than asking question, or drawing a clock. But this is me just ranting again!

So in his 50s you were noticing changes?

Was you husband aware of the problems?

Personality is an area that seems to come up again and again. It is my personality that has changed most. I don’t think I am the same me. There are two of me, the one that is sinking further back as if a diminishing character in my head and the me that people see now, that I’m slowly losing control of, or is taking control of me.

It always puts me in mind of an old film, ‘Invasion of the Body Snatchers.’

It is heart wrenching to hear this stories of loss. I think death must be easier to deal with.

I wish so much that I could make it all right!

My thoughts are with you both.

Stay Safe and Keep Well!
Richard

I fought & fought with all the experts because having experienced Alzheimer's up close before I knew my OH didn't have it. I'm sure I got the 'difficult wife, unwilling to accept diagnosis' label. He was far too aware of what was going on & to a lesser extent still is. At that stage the problems were more about his speech, personality & behaviour. I think he knew things weren't right & it was whilst we were on holiday that he started to mix words up. I asked him if he wanted to talk to the doctor about it when we got home & he agreed. His age & symptoms all pointed to FTD but at the time I didn't know that. The worse thing is he was put on Donepizel which made him violent as his brain was being over stimulated & totally ruined those early dementia years we otherwise could have enjoyed.

He was formally diagnosed with Alzheimer's in 2014. I finally managed to get him reassessed in 2017 but still the diagnosis remained - the specialist just said it was 'atypical'. It was only in 2018 when as part of a drugs trial he had a lumbar puncture & brain scan that we were told he didn't have Alzheimer's but probably FTD (PNFA). Once I read up on it I realised all the signs were there - I don't know how they'd previously got it wrong, I'd told them everything. He was immediately taken off Donepizel & things did improve for a while but I still get angry about the years we lost through the misdiagnosis & wrong drug treatment.

However I did feel vindicated. When we spoke to an expert in FTD/PNFA he was furious that no one had listened to me & actually sent a very scathing letter to the people who had been involved in the earlier diagnosis & treatment of my husband but that didn't bring back those 'lost' years.

We are now further down the road & my husband can no longer speak - he can say odd words but they're very hard to understand, even a basic yes or no requires guess work. He tends to use one word ('pills') for everything. I just have to try to guess what he really wants! His understanding however is still quite good & he will often laugh at a joke. However he cannot follow even simple instructions, read a book, use an iPad, mobile etc. His walking is slow & he shuffles but I think that in part could be due to medication.

I could go on but I think that gives you a general overview.
 

White Rose

Registered User
Nov 4, 2018
679
0
Hi Richard
Only just seen your post. My partner had a very sedentary job, too my knowledge he had no sports injuries in the past. But he was very intelligent and had a very 'high powered' job which included a lot of flying and travelling for work. In body he's very healthy so I always think he must have worn his brain out with overwork!
But seriously, his mother had dementia so I'm inclined to think the Alzheimer's was genetic in his case.
All the best to you.
 

Agzy

Registered User
Nov 16, 2016
3,780
0
Moreton, Wirral. UK.
I’m continuing with the same theme of possible related events, leading to later onset of dementia. We have looked at key events prior to the onset of dementia, now we will look a lot further back, maybe decades.

I’ve been reading about research into devising ways to determine if someone can be tested for dementia, before the signs, or symptoms show. This seems to be all on the premise that the possible causes of dementia may have started years and possibly decades before any symptoms were noted.

We have all heard of the well known footballers and boxers that have developed later dementia. It seems obvious that continually heading a ball, or being punched, will damage the brain. However, there is no definitive proof that this is true. The cause of the original injury has long gone and only the onset of dementia remains. Often there seems to be no related cause.

In my case, doing a bit of research into my medical records and drawing a history line of my health life, it seems that an insect bite, that caused a major allergic reaction, that impacted heavy on my immune system, does seem to be the start of all my problems and leading to this final diagnosis of dementia. Now at the time, I was given treatment, which I believe was antihistamines. I was in France when this happened. I never recovered fully, but I was able to get on with my life. Later a doctor suggested a Lyme disease test be carried out. No positive results. The doctor then explained, ‘It is like a hit-and-run accident. Whatever caused the damage has gone and only the damage remains!’

This change my viewpoint dramatically. I had always thought I would find the cause and then be able to treat it, but now I realise I can only live with the damage.

This week’s question:

Looking back as far as you can, try to trace the significant things that happened ie, did they do anything that may have caused brain injury, such as sports, did they have any major illness, measles etc, any accident, fall or car crash, etc.

We all had knocks, bumps, coughs and colds, but it is that thing that had a major impact on that person's life, that I'm looking for and only you can evaluate that?

Question: If the person with dementia, had any significant event many years ago, please, briefly state the event and how many years before the person was diagnosed?

Examples: Car accident that caused head injury. 22 years
Lyme disease. 31 years

If there is no significant event throughout their life, just start, None

Many thanks for taking part!

Stay Safe and Keep Well!

Richard
Non I know of but enough tragedy in her life for three lifetimes