Tuesday, 21 November 2017

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham, in 2005 

It was done as a way of helping newly diagnosed people negotiate the system.

Information pack for those newly diagnosed as having Dementia

This pack was produced by our local branch of the Alzheimer's Society, with help of our local County Durham Dementia hospital.

The pack contents were:-

Information about Lewy Body Dementia, including symptoms and complications etc.

Information about the medication I was being put on

Information about the local groups within our local Alzheimer's  Society branch, including Carers Support, Dementia Cafes,  and Discussion Groups for those living with dementia etc.

Phone numbers of our local branch staff

Direct phone number of my hospital  consultant, for emergency.

Phone numbers of the Dementia Hospital staff, including an emergency 24 hour number, which got the carer direct to an on call doctor or nurse at the hospital.

List of local services within our town,  including social services etc.

List of activities to help us to remain active 

Sadly, as this was a local pack, it had to be stopped because the Alzheimer's Society Central Office, objected, and said it could not be used as it was not a national project.

What a pity they did not think of getting it rolled out around the country, because it was so useful to everyone being diagnosed at that time.

One thing that would have been very useful at the time, was a wallet sized card stating, that I had Lewy Body Dementia, and contact details of my doctor and family, along with my medication etc.

One of these, "I have Dementia" cards was later produced by the Alzheimer's Society's  "Living with Dementia Working Group"

This was such a handy pack to be given after your diagnosis, because the support services were there at the time, and we knew where to go for help.

I found this to be a brilliant idea, as did many carers and people with  dementia


Monday, 20 November 2017

What would you do to stop Alzheimers

The other day some one asked this question on social media 


If you thought you were going to get an illness like  Alzheimer's disease, or Dementia  what would you do, or would you want to know what was coming.

I guess many like myself would be utterly terrified of the thought of getting one of these illnesses, but in all honesty, there really is nothing we can do to stop it.



I thought my life was coming to an end, when I was given the diagnosis of early onset Lewy body dementia, but my wife and daughter had other ideas, and without their support I would surely have given in altogether

This was before my second diagnosis  after we had moved  home, after losing my job. 

It was then we found out that my original notes had been lost by the first hospital

So I had to be diagnosed all over again, but after this diagnosis was confirmed again, I got more support and help than the original hospital had given me

I was told there and then to "REMAIN ACTIVE " and not to think of what was around the corner, and it helped me.

But my daughter was a biologist and had read about this problem at University, and she kept me going

I was then given this advice by the consultant. 

If a hobby or job you have done for years, and you find that it can not be done on one day, leave it and try it on another day

If it fails on the second day, leave it and try on a third day 

If it fails on the third day, leave well alone, and go on to try something new, otherwise you will end up being stressed and depressed, at losing the ability to do something

This will have a knock on effect on your family and friends

This was good advice and helped me to move on. 

Sadly this consultant left, to spend her time climbing the Himalayan mountains. I guess it was more relaxing than working for the NHS

But this lady was a real professional who wanted to help her patients


I do think people need more support after a diagnosis of dementia or Alzheimer's, because there is little or no  support  these days, it's still a post code lottery

It's my own opinion that there should be dedicated dementia nurses, at the diagnosis, who can then go on to support a person and guide them through their problems. 

There also needs to be more support for our carers, because they have to start from scratch, without any help from social services

What is more, they are saving the country hundreds of millions of pounds a year, with little thanks from the Government. 

A carers role is 24 hours a day, 7 days a week, trying to protect us from coming to harm, and in many cases, without rest themselves.  

Along with this we should be getting more information about our illness at the diagnosis, as I did. 

This allows us the time to take the diagnosis on board in our own time.

This information should also be kept up to date, because there are too many websites these days, which are out of date, and much of the information differs from other websites.


While the news media are full of ideas these days, on how to stop us getting these illnesses, I do wonder where they get these ideas from, or whether its just a way of grabbing headlines and selling their rubbish newspapers 

At the end of the day, if the specialists really knew what was causing these illnesses, or how to stop them, they would be highlighting this themselves

A few years ago, I was discussing Lewy Body dementia with a friend of mine, who has since died. 

We had both had Lewy Body Dementia, and had both worked on live electrical installations over the years, and we wondered if that was the cause, because its not exactly healthy working on live high voltage cables. 

There had been a lot of speculation in the media about high voltage cables and  other illnesses like leukaemia.

But I am sure if there had been anything in this, we would have known by then,

 However If you are going to get one of these illnesses there isn't much you can do to stop it, but by remaining active, it has been proved you can keep going for a lot longer

As one Professor in Neurology in the Northeast once said, we either "Use our Brain or Lose it". 

I have always remember that and it helps me to fight on, and I have no intention of giving in and stopping yet, because life is to short

However I do feel that's it's very important to get as much as you can out of life, and not think about what you have lost or are missing. 
It's about our pets, Families, and Grandchildren etc, and if you focus on them it takes your mind off your own problems

I know that it's not a bed of roses living with dementia, but with help and support from others, you have to make the most of a bad situation. 

I am only too glad that I have voice activated software and spell check on my computer, and this allows me to carry on writing my blog.

I am sure that I would have given in by now, if it were not for these two tools, because I can say the words but have little idea how to spell most if them these days. 


Saturday, 18 November 2017

Dementia and hobbies

Many people give everything up after a diagnosis of dementia, and simply give up the will to fight on.

 But others keep going with the it hobbies for as long as they can, while some even learn to do other hobbies, or even  learn a different language, which is good.

Over the years many of my hobbys have been given up, either because I forgot how to do them, or they became too dangerous to do any more.

As far as art is concerned I don't seem to be able to draw properly anymore, which is upsetting.

When I was an engineer I could go and look at a job of work, then I would sketch it out, and measure it up, knowing that I could work from the sketches etc.  These days it's all gone and trying to sketch things is very hit and miss.

However I do still fight to hang on to using my computer and my camera, and although I can't always remember the settings, I am still determined to hang in a long as I can

Other people have other hobbies, which vary quite a lot.

I know someone who now carves walking sticks as a hobby, and that is amazing to hear about.

I used to love wood carving, but these days, with lack of coordination, I am a liability when it comes to using sharp tools etc, so it's something that was stopped, although I still have my tools. But no doubt these will be sold off before  I do any damage to myself

Others go walking with groups, or meet other friends in pubs etc, where they have a good time.

I do feel that it's up to us all to keep fighting for as long as we can, because the thought of giving up is a step too far.

Some people like singing for the brain these days. However although I was in a church choir for over 10 years, I no longer sing these days, because I cannot get out of my boots as far as my voice is concerned, so I would rather doing something that I can still enjoy doing.

I no longer swim because of coordination problems, because these days, when I move my arms while swimming, my mouth opens and I end up swallowing more water than enough, so this was stopped.

However it's good to hear about groups for people with dementia etc, these days because people really need to remain active and mix with others where ever possible. 

I admit that these days I struggle due to my memory,  Osteoarthritis in my  knee and hip joints, as well as my breathing problems.

But I still carry on at my own pace and that's important to me, as well as my family 

Photography keeps my brain active and allows me to take photographs of landscapes and wildlife, and to me that's very important.

When I am out taking photographs, people always stop and speak, so I am never alone. It's amazing how many times a photographer has come up and spoken to me, and perhaps told me where to get photographs of different things. 

Yes I can have bad days when I don't remember the camera settings, but it's not the end of the world.,

These days I stick to automatic settings most of the time, because I struggle to remember the manual settings, and while it's upsetting to lose that part of the hobby, I do feel that it's not the end of the world. 

The fact that I enjoy going out with my camera, and enjoy myself is all that matters. 

I think everyone should be encouraged to remain active and mix with others while they can still do it.
.


Wednesday, 15 November 2017

What happened in my brain

I was enjoying my job of 28 years, as an engineer until my brain went pear shaped, and these changes were and still are terrifying at times

It all started when I realised that I could no longer write things out properly,  and kept changing from small case to capitals, without realising what I was doing. It was becoming a nightmare to use a pen.

I also struggled to write my signature, because I get so far through, and then forget what is coming next.

My hand writing was not something that I was proud of, but these days, I just won't fill any forms in or sign anything unless I have too.

I feel so embarrassed, and shocked at how bad it's got now.

There are times when it looks like a spider has done it, I have no control over a pen anymore, but I believe this is down to my tremor at times.

But it's not just my writing which has changed.

I sometimes have trouble typing because of my tremors, and go onto the wrong key,

However this all started at work too, and people were asking questions about why I had this tremor, because it was obvious at lunch time when I tried to use a knife and fork.

In the end I used to go home, where no one asked about this problem.

This  caused other problems because I found that I was unable to hold a screwdriver steady when doing electrical work, and that was becoming a hazard after 28 years

I then realised that all my electrical training was disappearing, and even my last electrical exam papers looked like something in a foreign language, something I just did not understand.

However not long after this, I noticed other problems which were unexplained, and to this day I dont really understand what's going on in my brain.

I noticed other changes which are strange to say the least, things like my taste in music and food changed quite a lot.
Before and after we were married, I never ate curries of any kind.

I always asked for a steak. These days I can eat curries everyday given the choice,   what is more, the hotter and spicier the better.

Everyone is staggered by this change, especially when it comes to very hot curries or chillies.
When I was younger I grew up with the Beatles etc, and also enjoyed classical music.

These days, although I still like classical music, I also like Freddie Murcury and Queen, Eric Clapton, and many others that I would never have listened to before.

I was never ever political, even though I had mild views about the subject, but these days my views have changed, and this terrifies me, because I always hated politics.

Understanding what I am looking at is horrible these days, because, I sometimes,  misunderstand what I am seeing or reading, and in occasions see the wrong words if I am reading.

It's as if my eyes and brain are no longer linked. But I no longer see obvious things these days, and can spend hours looking for something which is right under my nose, or I simply don't recognise it.
I also sometimes see things which are not there, and that's upsetting at times, but I try to watch to see if it moves before I do anything.

These days trying to plan things,  is a total nightmare, because it takes a long time to work out something, that would have been done in a few moments years ago

I know that I drive my wife mad at times, because I cannot always give her a straight answer,  it takes me longer to think and  work things out in my brain.

I think this is all to do with living with Lewy Body Dementia,  but we may never know until I pop my clogs and my brain is looked at.

I understand  that Parkinson's and Lewy Body Dementia are similar in many ways, but it's still very confusing to live with.

Monday, 13 November 2017

Balancing Act

Like many people, I find that life gets difficult, when you have more than one illness to think about, and this can cause extra problems with medication

Recently I was told that medication which supports us for one illness, can have the wrong effect on another illness which we may have

So in more than one way, medication can be a fine balancing act

I was diagnosed was having a form of Lewy Body Dementia,  something which never made any sense at the time, but I knew there was something wrong, because I was losing control over my job.

At first the doctors had thought it was something to do with  Encephalitis or something like that, because I had been very ill with pneumonia, but then the diagnosis of Lewy Body Dementia came out.

But at the same time I was struggling to cope while working, due to tremors and memory problems, which was hazardous, as I was trained to work on electrical installations  etc, and not the type of work which is easy when a tremor starts

I also had what was thought to be industrial Asthma, although I don't remember any tests being done.  However over the last two years this all changed,  when I finally got a diagnosis of Bronchiectasis and Emphysema

It seems that this all started when I was very ill with whooping cough as a child, and this Bronchiectasis damaged my lungs.

This was made so much worse because of years of working in industry.

After several  chest  infections a year, a new family doctor looked into my medical report and found that all of the chest infections were down to one infection which was deeply rooted in my lungs, and which refuses to go no matter what they throw at it.

I have found that after two weeks of antibiotics, I can be clear for around 8-10 weeks,   and then it all seems to start all over  again which is frustrating.

But during this time I had been told to use my inhalers more often than usual, so i carry one in my coat pocket these days. I also have an emergency pack of antibiotics, which I carry when I go on holiday

I also used a nebuliser to help my breathing and clear my lungs on a morning.

However this has now been  stopped  because one family doctor thought that the nebuliser medication was increasing my tremors.

It's very sad when this happens, but I guess it's all a learning curve, but the fact that the tremors got a lot worse, was enough for me to stop using the nubuliser all together.

The nubuliser had been a great help to me, but on balance the tremors were so bad last month that there really was no option

These tremors can be distressing at times when I can't hold a knife or  fork still at meal times,. 

So I  tend to eat using one hand,  while keeping the other hand out of the way.

Medication also causes problems with the Lewy Body Dementia, because the illness makes you sensitive to certain medications as I have found over the last few years.

I struggle with occassional graphic nightmares etc, and I was given medication to control it, but this caused more problems in the beginning, and had to be cut down to a manageable dose. 

So it's a delicate balancing act when it comes to medications, but luckily most doctors are aware of this problem, although there are  some doctors who don't always check before prescribing medication

However most medications are changed every so often if they don't seem to be working, and this causes extra problems with my memory, because I have to remember what to take and when.

Along with this,  I don't always remember how many times I have used things like inhalers. My brain just does not work remember things like this all of the time and that's distressing.

Thursday, 9 November 2017

Derby Dementia Group

Today I was sent a link to an Independent  Dementia Group In Derby, called the Hardy Group. 

This sounds a really nice group, for people living with Dementia, because it inspires them to remain active, after their diagnosis, when its far too easy to sit back and do nothing.

To me this is everything a Dementia group should be, encouraging people to remain active, and I feel proud and honoured  to know both Dave and Heather Roberts, who put so much time and effort, into running this wonderful group 

However, like everything else these days,  it costs a lot of money to keep these groups going, but I am hoping that we can encourage people in this country to step up and help with the running costs, to a brilliant worthwhile charity.

Far too much money goes into these Larger Dementia charities, who don't provide the real services which are needed these days, so its left to the independent groups, like The Hardy Group to step up and provide these services

The Hardy Group is a small charity supporting people living with dementia in Derby.  We are run entirely by volunteers and our activities are funded through grants, donations and fundraising.  We have been very successful so far in our efforts to fund our activities which allow us to put on social events and monthly day trips for our members.  For many of our members our activities are a lifeline and give them motivation to fight the progression of their condition and gives energy to their carers to keep on going.  For some, attending our events is the only time they get out of the house.
 
We are starting a new fundraising campaign through Virgin Money Giving and would be grateful for whatever you are able to do to advance our cause.  For our campaign to gather momentum we need to spread the word as far and wide as we can so can I please ask you to forward this email onto your friends and relatives to help us raise awareness and hopefully gather some funds along the way.
 
This is the link to our Virgin Money Giving page which will give you some information.
 
 
Our website will also give you an insight into what we do so please find the time to have a look.
 
 
It takes around £15,000 a year to support our 230+ members so any help, however large or small, will always be gratefully received.
 
Remember, all of us at some point in our lives will be touched by dementia, either directly or through someone we know.  With proper support life doesn't have to end when dementia begins.
 

Regards
 
Dave Roberts
Chair
 



The Hardy Group




       

Find out more

Charity details

Registered address
7 Gleneagles Close,Mickleover
Derby,
DE3 9YB
Phone
01332553031
Email us
Visit our website
Charity number
1169563

                           


Homepage


Life doesn't end when dementia begins. Believe it or not, with the right support and stimulation, you can live well with dementia!

members

The Hardy Group is a thriving social group for people living with dementia who wish to stay active through a programme of events and social gatherings. It is made up of people with dementia and current and past carers who through their own experiences support each other along their journey with dementia. The group has a very wide age range from the under 60’s to the over 90’s!


We are run entirely by volunteers most of whom are living with, or have lived with, dementia themselves. Our income comes from grants, donations and fundraising and every penny goes on providing support for our members. It is all about having fun, living life as fully as we can, making new friends and supporting each other in a community built on common challenges and mutual understanding. 

Through our social get -togethers and monthly days out we have created a sense of fun and excitement that helps motivate our members to keep on fighting the progression of symptoms and keep them out of the care system longer.

Social meeting

Social isolation is a major risk with dementia as the stigma of the disease frightens many people away. For some of our members our activities are the only times that they get out the house. Hardly surprising then that our coffee mornings regularly have over 120 attendees and that we need 2 coaches for our days out!


Days out

The mental stimulation and moral support that we provide is crucial. Our members are amongst like-minded friends so that they can be themselves. Nobody will judge them so they can let their hair down and have some fun. We laugh a lot and for a while at least it is possible to feel normal again. Everyone leaves our activities with a smile on their face.



Trustees

Dave Roberts
Chair
Sue Atherton
Secretary
Tony Muldoon
Treasurer
Bernard Crowther
Membership & Activities

Volunteers

Ann Crowther
Angie Soppett
Heather Roberts
Heather Govier
Jean Bailey
Sara Bailey
Carole Wheatley
Dave Harrison
In Memory Of Geoff Atherton, Founder Member. 1944 – 2016



Monday, 6 November 2017

Fireworks

Many people enjoy fireworks,  and when I was younger I enjoyed them.

These days I struggle and get startled very easy, but I guess it's because these things are much louder than they were before, and my brain does not cope with noise the way it used to do.

Recently I wondered how military people coped with these very loud landmines as I believe they are called..

These things seem to shake the house when they go off, and I confess they terrify me at times.

To today I heard that the Chelsea Pensioners were writing to groups running firework displays, asking them to think about people with post traumatic stress, from military action.

While I don't think many people will take any notice, I confess that I cannot really  understand what these people may be going through when they came home injured from war. 

But they must be so mentally scarred, that these noises bring back many unwanted nightmares of war zones.

Trying to  live with the nightmares and horrors of what went on, and trying to rebuild their lives, while others set off these very large fireworks around them..

However it's not just troops, we must also think of or pets and wild animals, along with our elderly and those who are seriously ill with perhaps heart problems.

While no one wants to spoil anyone else's fun, I guess we have to consider others in these  groups, because some of these very loud fireworks  or landmines as they are called can frighten many others

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham...