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Showing posts from November, 2016

Sensory problems getting worse

I have noticed sensory problems over the years,  but things seem to be getting worse these days A few years ago I lost my sense of smell, and as my wife has said on many occasions,  I could end up in serious trouble one of  these days, because there are times when i cannot even smell things like gas, and that's not a good thing.There are times, however  when I smell things which are not there, and that is weird.Occasionally I smell something burning, but never find anything, and it drives my poor wife mad looking.
Not so long ago my tastes in food changed dramatically, something that no one can explain to me.Before we were married, and indeed afterwards, if we went out for a meal, I would only have a steak, or an English meal, I would never go for curry or anything else. I guess I  was what was called conservative in everything I ate.These days however I can eat curries all day given the chance, and what is more, the hotter and spicier the better. There must be a reason for this, b…

Memory and Keeping fit

Its been in the press quite a lot recently about keeping fit, when you have a brain problem like dementia, but this is not as easy as it sounds, because there are not enough trained staff in the country to cope with these illnesses

I have often wondered how you are supposed to keep fit, when you have dementia, memory,  or any other neurological illnesses, because your brain does not work as fast as other people brains, therefore your reactions are much slower
 .
I was once told by one doctor at home that I was overweight, and should do something about it.

So after a few weeks of wondering what to do, I was referred to the local gym.

However this was to be short lived, as the instructors knew very little about their roles, let alone dementia and neurological problems.

I went for my induction, and was told to be careful, in following all of the given advice, but had this young lady really been listening when my wife explained that I had a form of dementia, obviously not.

The next day I…

What is Bronchiectasis

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From the British Lung  Foundation.UK Website
What is bronchiectasis?
This information is for people who have bronchiectasis, their families and carers. It explains the causes and symptoms of bronchiectasis, how it is diagnosed and how it is treated. When you breathe, air is carried into your lungs through your airways. These are a series of tubes, called bronchi.
Your airways contain tiny glands that produce a small amount of mucus. Mucus helps to keep your airways moist and traps the dust and germs that you breathe in. The mucus is then moved away by tiny hairs, called cilia, which line the tubes.
If you have bronchiectasis, your airways become widened and cannot clear themselves properly. This means mucus builds up and the tubes can become infected by bacteria. If bacteria survive in the tubes, they become inflamed, which can further damage your airways. Once the damage has occurred, it is permanent. The exact number of people who have bronchiectasis is unknown, but some studies sugg…

Child abuse

These days we are hearing more and more about child abuse, because of a scandal in Football clubs and football trainers etc. I have heard many people talking about this, including many, who think that's it's been left for far too longOne or two have even said that grown men, should forget what happened to them as children, but in all honesty when it's this bad, it will haunt you for the rest of your lifeIt's  down to the fact that going back over the years, it was a case that those who were abused, had no where to turn  for help for help,  and badly needed support Simply because no one would believe them at home, and others including the police forces and social workers,  would certainly not wish to get involved, believing youngsters to be all liars.Many were too terrified even to speak to their  parents or family's members,   about this, because they would not have been believed. In many cases the abusers were largely well known people, and many of these were held…

Long morning at the hospital

This morning I had to go to the local hospital for a long series  of tests and xrays, before seeing a new chest consultant

After this I had a lot of blood taken for a list of blood tests, to make sure that there is nothing else  causing, or making my problems worse
This consultant was very thorough, and talked about all of the problems I was having, I confess that this was never done like this before.
Next week I have to do sputum tests over five days and take them to our family doctors, so that the consultant can make sure that there is no other infections  in my lungs
He already knew that I had the Heamophilus Influenza bug inside my lungs, but wants to check that there is nothing else
It seems that this Heamophilus bug could have been there for many years, which accounts for all of my chest infections, and could have been the result of childhood illness which wrecked my lungs
I am now waiting for dates to attend another hospital  where I will  have more tests done,  followed by …

support for those with Learning disabilities

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When I heard this story on the news, I felt that I had to share it, because it shows hope for other vulnerable people who want to prove that they can make a difference    Diner with a difference opens in Gatehead

<img alt="Davey Duke's is a diner with a difference." src="http://news.images.itv.com/image/file/1153320/article_update_img.jpg" /> Davey Duke's is a diner with a difference. Photo: ITV News Tyne Tees <img alt="." src="http://news.images.itv.com/image/file/1153325/article_update_img.jpg" />
An American style diner has become the first part of a £2m project helping young people with autism to open in Gateshead.
Davey Duke's is staffed entirely by young people with learning difficulties who are getting training and paid employment.
Next year a hotel offering respite care for people with autism will also open on site, becoming the first project of its …

Sundowning

As I have never fully understood this term, I looked it up on the Alzheimer's Society's website, so that I could understand it a little better, and understand what the Consultant was talking about on Friday

Sundowning

Sometimes a person with dementia will exhibit an increase in certain behaviours in the late afternoon or early evening.

For example, people may become more agitated, aggressive or confused. This is often referred to as ‘sundowning’.

This pattern may continue for several months and often occurs in those in the moderate to severe stages of dementia. It can be particularly distressing for carers if they are trying to relax or have some quiet time.

Sundowning may be caused by:

• disturbance to the 24-hour ‘body clock’ that tells our bodies when to sleep, caused by the physical changes to the brain
• loss of routine at a previously busy time of day • too little or disturbed sleep •
 too little or too much light
• prescribed medication (eg for pain or discomfort) we…

Heamophilis Influenza Bug

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Haemophilus influenzae type b (Hib)


Haemophilus influenzae type b (Hib) is a bacterium that can cause a number of serious illnesses, particularly in young children.
Hib infections used to be a serious health problem in the UK, but the routine immunisation against Hib, given to infants since 1992, means these infections are now rare.
Of the small number of cases that do occur nowadays, most affect adults with long-term (chronic) underlying medical conditions, rather than young children.
Problems caused by Hib Hib bacteria can cause several serious infections, including:
meningitis – infection of the lining of the brain and spinal cord septicaemia – blood poisoning pneumonia – infection of the lungs  pericarditis – infection of the lining surrounding the heart  epiglottitis – infection of the epiglottis, the flap that covers the entrance to your windpipe  septic arthritis – infection of the joints cellulitis – infection of the skin and underlying tissues  osteomyelitis – infection of th…

Balance clinic

I had my 6 monthly visit to the balance clinic on Friday,  and left feeling totally confused. This was because the consultant, keeps in touch with my new Lewy Body consultant, yet things had not changed as far as she was concerned, apart from the fact that I am worse than I was at the last visit. However after my assessment she discussed sundowning, and then went in to talk about my Lewy Body Dementia? This threw me completely and my wife felt exactly the same, because we had settled down to accept the new diagnosis title of Mild Cognitive Impairment I confess that I knew nothing about sundowning, so it was a surprise to hear what she had to say,
Although when I got home, my wife had to explain it all again, because I had largely forgotten what was discussed Over the last few months I have had a lot of problems after 6 pm each day, but never connected them to the illness,  but thought that I was just having a bad night We have just received a new appointment to see the Lewy Body Con…

Change of Diagnosis

I have changed the title of this blog as I will explain in this post 

Back in 2004 I was diagnosed as having early onset Lewy Body Dementia  and then lost my job as an Electrical  engineer, because I forgot how to do it I then moved home to the North East, to live in the family home which was now empty. Within three months of moving, the original hospital in the South of England had lost all of my notes, and after waiting 9 months for them to turn up, my new consultant decided that there was no other option but to do the whole diagnosis process all over again
This took another 9 months to sort out, but I think the new consultant just wanted to make sure that she got the correct diagnosis
I had been given letters from my original family doctor and neurology  consultants explaining my diagnosis
After the second diagnosis had been completed in late 2005,  and the diagnosis of early onset Lewy Body Dementia had been confirmed, I managed to get a grip on my life and managed to move on w…

Long morning at the Hospital

This morning I had to go to the local hospital for a long series  of tests and xrays, before seeing a new chest consultant

After this I had a lot of blood taken for a list of blood tests, to make sure that there is nothing else  causing, or making my problems worse
This consultant was very thorough, and talked about all of the problems I was having, I confess that this was never done like this before.
Next week I have to do sputum tests over five days and take them to our family doctors, so that the consultant can make sure that there is no other infections  in my lungs
He already knew that I had the Heamophilus Influenza bug inside my lungs, but wants to check that there is nothing else
It seems that this Heamophilus bug could have been there for many years, which accounts for all of my chest infections, and could have been the result of childhood illness which wrecked my lungs
I am now waiting for dates to attend another hospital  where I will  have more tests done,  followed by …

Off to see the new chest consultant

Tomorrow I am off to see the New Chest Consultant to see about my diagnosis of Bronchiectasis and COPD. I guess this is going to be a long process, but if they come up with the answers this time, then  that's all I can hope forOver the last few weeks I have been struggling and feel as if I am trying to breathe through a drinking straw which is not good But I am hopeful that something will be resolved somewhere along the line.I understand that I will be sent for more tests to confirm the results, but this never happened at the last hospital, and they did not even have access to my doctors notes or recent xrays which was odd.I may also  get some answers about this Heamophilus Influenza bug I am carrying around in my lungs too. After the last flu jab,   I certainly don't want to have another one. It made me so ill I don't want to go there again. I dont see the point in putting more bugs into the body by giving a flu jab, if you already carry the virus in the first place, it j…

Lovely weekend

Although I was feeling rough with my chest, we managed to have a lovely weekend in London and a lovely Anniversary We travelled down to London on a train full of  Scottish football fans, going to Wembley for their game with England
Many were lively but they were good natured and that's good these days.I confess that I struggled with the air in London, but that's they way it is these days. I can remember the days  as a child, when the air in London was a lot worse and they had smog nearly every dayThe only downside was the hotel, which was not so good,  but that was booked in a package deal through the travel agent We had stayed at this hotel before, but it's gone down hill over the last few years When we arrived all seemed well, and then we went off to book some theatre tickets. After returning we went off to get dinner at a different hotel owned by the same group of  hotels, something which seemed odd at the time, but it was a nice 3 course mealHowever the next day we me…

Trying to fight Bronchiectasis

Ever since I was diagnosed as having COPD and Bronchiectasis, it's been a daily struggle at times I was told some time ago, to take each day as it comes, but sometimes that is easier  said than done This is  my second chest infection since the end of August, I feel totally drained and worn out. My problem is  that I have tried to carry on doing DIY jobs at home, only to end up soaking wet with sweat, and totally drained after only a few minutes, and that is very hard to accept.After working as an engineer, on call 24 hours a days, this is difficult to understand let alone move on fromGoing up stairs is becoming harder by the day, but it's a way of exercising, so I keep pushing myself  to do it. After being out for a walk on a morning, I find I drop off to sleep after lunch, where I stay for 2 hours or more. For some reason I find I sleep better upright in an armchair, that I do propped  up in bed.  The other day I slept through a door bell and telephone ringing  and never hear…

Common cold and the flu vaccination

A couple of weeks ago I got the common cold and like everyone else I just got on with life.However i was due to have a flu vaccination,  so my wife contacted our doctors to ask if I should wait until the cold had completely cleared before having the vaccinationShe was told that I should carry on and get the vaccination, because unless I had a temperature I was completely safeI did not have a temperature at the time so we carried on with it.Today I was told by an NHS staff member that it was unwise to have a flu vaccination when you have a cold? I was told that I should have waited for 10 days before having this vaccination because it could have  caused problems So just who do you believe in This? I told this staff member that I had COPD / Bronchiectasis and struggled with recurring chest infections, so it's hard to recognise when it's a safe time you get this vaccination.My problem is that these infections usually start around 6 - 8 weeks after the previous one, so it's ha…