“Walking and Traffic”

I’ve just been trying to make another video recording about “walking and the traffic” but there is so much noise in the house that I just can’t get it right so I will have to try again another day.

 

What made me want to do the video is that whilst Sumi and I were out for our early morning walk Sumi said that I was becoming extremely anxious, jittery, frightened and losing my balance and especially as any oncoming traffic approached us.

 

She said that every time a car or motorcycle approached us my walking would start faltering from side to side as if not knowing which way to move and then I would suddenly just freeze on the spot as if waiting for the vehicle to hit me, I said to Sumi (I know) that’s exactly what I am thinking as now I can’t judge the speed of any vehicle so to my mind and my deteriorating  reflex action they are all going excessively fast and about to hit me so I get extremely thrown off balance as to which way I should be moving to get out of the way, so I’m starting to get the feeling that not only am I a danger  to myself when walking but also to other traffic!

 

I have very much the same problem when trying to cross from one side of the road to the other side, quiet often after a lot of legs to and fro hesitating movements I get to the middle of the road but then with the traffic whizzing both in front and behind me I just freeze on the spot so much so that in the end Sumi is having to almost pull me across the road.

 

So if as a person who has any type of dementia you go out alone then take care when walking as our judgment can become extremely impaired…        

 

Barry ©                 

(Dementia Roller Coaster)

I’ve been a bit down and extremely depressed for the past few week but that’s what they mean about being on the (Dementia Roller Coaster)

 

I’d had 3-4 weeks when I had been feeling on a really good high in life “BUT” then something comes along that shatters your very foundations and daily equilibrium in life which in my case was the unexpected problem with my computer which at long last has been sorted out, so I’m back on line and communicating again!

 

Then on Friday I had to go for my monthly check-up which is when we took the computer back to the shop for repair, I really wanted to take it back immediately ‘but’ I had to wait on my son-in-laws availability of time to drive us into town which then makes me feel even worse as it means that I’ve lost all my independence of being able to drive myself and have to rely on other people all the time which I don’t like having to do!

 

But what a busy day last Friday turned out to be as after the bank and sorting out the new ATM card which had me utterly confused, then onto the doctor, computer shop, and then doing our monthly shopping all on the same day it sent my mind haywire, I guess you could say it was a learning curve as to not to try and do too much in one day!

 

The on Saturday it was our Son-in-laws ‘University Graduation’ and we had to be at the function hall by 6-30am which meant a very early start and then the ceremony went on until 3pm so it was another very long and somewhat noisy confusing day with over 1000 students receiving their diplomas, so the whole day somewhat disrupted my diabetic meal time equilibrium as we didn’t have lunch until almost 4pm which then also meant a late evening meal so today my blood glucose is a bit high!

 

After the graduation we went back to the computer shop and I collected my now repaired computer and ended up buying a ‘Modem Wi-Fi Router’ which thank goodness the owner of the computer shop who can speak very good English set up ready for me so all we had to do when we got home was to plug it in. Now all I hope is that I don’t have any more computer glitches as when that sort of thing happens then my brain goes completely lost and out of control, but then that’s the effect of the dementia brain for you!

 

“Exceptionally bad night”

I had an extremely bad night with frequently changing nightmares some of which I can still recall elements of. I recall about all the mutilated, dying, and dead babies that I had to bathe clean and then bury that had me crying out in anguish.

 

Then I can recall about the Whole World going through cataclysmic events and being struck by horrendous Earthquakes, Volcanic Eruptions, Floods, Tsunamis, and total World devastation and deaths which made me wake up in a much disorientated bewildered state of mind and streaming in perspiration. Then I was suddenly woken up after Sumi had shaken my body, I sat up and just sat on the edge of the bed utterly bewildered and feeling totally drained out from exhaustion and explained about the nightmares to Sumi as she relaxed the back of my neck.

 

Nights like this can be incredibly terrifying for anybody who has any type of dementia as it becomes difficult to comprehend what’s “fact or fiction” and it takes time for the mind to return to some sort of normality…                         

The waters of life

I have lived with Mixed dementia (Alzheimer’s LBD and Parkinson’s disease) for now almost 10 years “BUT” and there’s many “BUT”S” in any type of dementia, but the most important one to remember is that there is still life after diagnoses, yes daily life can sometimes be an uphill battle ‘But’ we must fight our way up that hill everyday as to do so is to succeed over the day and over the illness, don’t let the illness be your master as you can still be master of your own destiny with positive thinking…   

 

Yet now I sit and reminisce that so much water has flowed under my bridge of life which I still try desperately to remember but now the flow is becoming much slower and the waters of life becoming murky with only faint shadows of my past, and it must be well over 3-4 years since I last had a puff on my pipe which I must confess I would love again to help bring back some of my memories, but that would be foolish!  

 

“Living with Dementia”

Living with Alzheimer’s or any other type of Dementia is a daily battle of wills and as the illness progresses so does the battle turn into a constant affray of who will win the day!

 

For me yesterday was such a day and I must confess that I was having a big problem with getting my mind and body into some sort of working order, everything I seemed to be doing was going haywire which then causes me anguish and I must confess that this morning it all got a bit too much for me and for some reason I found myself weeping in Sumi’s arms like a broken hearted child, she soothed my arms and massaged my neck and said don’t worry your OK it’s just a bad day and to confusing for you, which was very true.

 

I kept saying to Sumi (I hate this illness, I want my life back again the way it used to be!)”But” we can’t turn back the pages of time or change or ‘Fate’ we have to fight on… 

 

“Yet” the strange thing is that after I had shed tears I felt better as if it had been a much needed release from the apprehensions of the day.

Confusing day!

Well I had my monthly check-up yesterday and all that went OK just my blood pressure was a little bit high, as for the pain and discomfort I’ve been having in my back and abdomen after examining me the doctor asked me (What had I been doing?) As apparently I have pulled the muscles in my back and abdomen ‘yet’ I have no recollection of overstraining myself! But then neither do I know why my thumb nail has changed colour and has pus underneath as again I have no recollection of hurting myself! But then that can be the situation with anyone who has dementia we can hurt ourselves and not realize it.

 

Anyway the doctor has given me more medication for my back and abdomen.

 

I think the reason my blood pressure was a bit high was that yesterday we just did too much in one day that had me all rather confused.  We started out at 9am by going to the bank only to find that the ATM was out of action so had to queue inside the bank, then we went to two different supermarkets to do our monthly shopping, then things started to get confusing for me as I also wanted to get matters sorted out in case we have problems with the internet again so we went to the Cell phone shop and after a lot of puzzlement I selected a good hand phone with a larger screen but then we had to go to another shop to buy the phone operating pulse card and phone number, OK we get that done and then we go to the computer shop and I bought a “Flash Stick Modem” for a standby in case the phone lines go down again but then they said we had to go to another shop to but the chip to make the modem active, by this time my head was reeling and it was almost time for my doctor’s appointment so my son-in-law took us to the surgery and then my stepdaughter and son-in-law went and sorted out the Flash Stick, so all these little irritating problems caused my blood pressure to rise, but that one of the problems out here theirs not such thing as (One stop shopping) you have to go from shop to shop anyway we finally got home about 5pm and by that time I was exhausted and crashed out in the chair but at least I think that I’ve got any further internet problem sorted out! Sumi said that I was so exhausted that I was asleep by 7pm!  

 

And now this morning all I have to do is to sort out how to use the hand phone but my stepdaughter will be instructing me! 

“A Most Devastating Illness”

Being diagnosed at any age with Alzheimer’s or any other type of Dementia is devastating for both the person and their family when you’re suddenly and without warning faced with an entirely unwanted new way of life and the realization that nothing will be the same way for you again… 


Obviously I can’t speak for other people who have been diagnosed, but when I was first told… it was as though a judge, without jury, had committed me to the death sentence… the only difference being in that for some people or criminals waiting on death row at least there is the chance of a stay of execution but with Alzheimer’s or any other type of dementia there is no such reprieve… although I’m sure we all say exactly the same thing in that (I’m not dying from dementia… I’m living with dementia) but the fact still remains that as of yet it’s an incurable illness and without any signs of a cure within the foreseeable future and an illness that still requires a great deal more understanding by the general public towards its ultimate consequences on the person, spouse and family…


Recently someone asked me ‘How would I best define Dementia’ to which I replied, it’s like an almighty Tsunami crashing into your once tranquil shores bringing with it all the weight of its devastation and leaving a trail of flotsam and jetsam behind it that our spouse has to cope with 24 hours a day throughout the year during its course, and not only that, the anguish continues for our spouse even after our demise as they have to try and pick some pieces of a new life that’s shrouded in loving memories… 


Maybe you think that’s a strange analogy… but given the fact that to-date there are well over +/-36 million people worldwide that have some type of Alzheimer’s or Dementia and with the numbers drastically increasing ‘year by year’ then it’s tuning into a worldwide Tsunami of which no country is unscathed… yet still so many people think our illness is just a matter of forgetting things “Which is definitely not the case” as the list of daily problems we must fight against within our illness are never-ending such as the:

 

(Disorientation, Obsessions, a sense of Emptiness within body and mind, and the loneliness even though our spouse and family are with us, Sundowning which can have the most traumatic affect on a person with dementia, Horrendous Nightly Nightmares that can have you screaming and limbs kicking out fighting to wake up thus causing your spouse to have many a restless night and possible become irritable (Not with you ‘but’ with the condition and lack of other peoples understanding) the list goes endlessly on and on… 


But not only that, as our condition slowly deteriorates so does our bodies immune system become less resilient in fighting other unwanted illnesses that seem to follow along with Dementia like a plague such as influenza, phenomena, bladder infections, osteoarthritis, diabetes, heart problems and even cancer ‘to mention just a few’ which then adds even more uncertainties within our daily life and causes even more catastrophic distress to our spouse and family… 


A cure for this terrible illness must be found, although maybe ‘Cure’ is the wrong word to use as better we say “Eradicated” so that Alzheimer’s and dementia become part of the ancient volumes of medical history only to be read by future generations… rather than them having to experience it...


“Yet” the pathway of life can be long! “YET” also sometimes short… so pray take heed of a now much wiser man who had never even considered the possibility of this illness befalling him and remember (You never know what’s round the next corner in life) it might just be Alzheimer’s or some other type of Dementia waiting to creep up behind you as its next victim… 


Barry 

“A victim of ‘Mixed Dementia’ Alzheimer’s, LBD, and Parkinson’s disease”


(Alzheimer’s has become my mother of intent in broadening its awareness)

 

“Started Saturday 6 Sept, sorry to all for being offline!”

Hi folks Sorry I’ve been offline for so long but this should explain why!

Also I’ve had so many messages and notifications that I doubt that I could ever reply to them all and I am overwhelmed by all your kind thoughts and concerns about me which makes me feel very humble, I feel so lucky to have so many kind thoughtful friends     

 

 

“Saturday 6 Sept”

 

I don’t like days like this when you wake up turn on the computer and internet only to find that all internet and landline telephone connections have been severed, so we call the telephone company using a cell phone but they tell us that they don’t have any idea when connections will be back on line again as they have to do repair work (YET Again)

   

(And then!) I really don’t believe this as my stepdaughter just called the telephone company again and they told her that the problem is due to that fact that in the early hours of Friday night/ Saturday morning thieves have climbed up the telephone poles that run from our village to the town and cut down and stolen all the heavy duty cables! So they are waiting for new cables to arrive which they said could be 4-5 days! As incredible as it might sound, they don’t have any standby cables to do the repairs immediately...

 

Now this is not a joke its actual true as things like that often happen out here, thieves and other people will steal anything they can to sell again to get a bit of money, and seriously in the past thieves have even stolen the railway lines and used to steal the wooden sleepers until they were replaced with concert sleepers!     

 

Problem is that now I don’t have any way of being able to tell my Family in the UK or friends on Facebook who will be expecting me to be on line for the Monday’s virtual memory café 

 

“Monday 8 Sept”

 

It’s very annoying as I now feel lost to the world outside without the internet, and it makes me wonder what we did before the advent of internet! I can’t even go to an internet cafe as they have all long since closed down as now all the youngsters have their own cell-phones, i-Phones, or i-Pads with internet connections so I will have to look into some sort of affordable backup options in case this happens again but ‘when I don’t know’ as again it brings up the problem of not being able to drive anymore and always having to be reliant on my son-in-laws availability to drive us into town to look at the options.       

 

I tried looking at the TV but there’s nothing good on apart from (Blood and Guts with Aliens, Vampires or Werewolves) what ever happened to good quality TV programs and films!

 

This has really got me frustrated as I feel as though someone has pulled the plug out of my daily routine of life, so goodness knows what I am going to do until the lines are repaired as I feel utterly lost, and now the problem with not having the internet is trying not to become despondent and keep myself motivated, I guess the best thing is to view this as an impromptu rest period and use the spare time to do some baking!   

 

“Tuesday 9 Sept”

 

This is now our ‘fourth day’ without the internet which is really causing me some stress and I can’t seem to just switch off and relax as the problem is constantly on my mind. I discussed the problem with my stepdaughter and son-in-law and what other options I could use to connect to the internet, we thought about the wireless system but have been told that out here it’s not that the signal is not that consistent, so we are going to find out about something called a (USB Flash-stick) that you just plug into your laptop! All I know is that it’s getting me far more confused and made me realize that I’m way out of touch with today’s computer, internet and Hand-phone technology which in all honesty is now far too much for my brain to absorb, the problem being is that technology is advancing at an amazing rate whereas my brain power aptitude is day by day declining so I need to depend more and more on the family to help me overcome such problems...                       

 

“Wednesday 10 Sept”

 

Fifth day without internet, so what will today bring as yesterday my stepdaughter called the telephone company again on her cell phone and they said that (MAYBE?) the connections will be working today so there’s nothing we can do but wait. Although just this morning a neighbour lent me his USB internet connection to try “BUT” when I went to install it the computer came up with a warning notice that the USB was infected with a (Trojan Horse Virus) so I immediately cancelled out trying to install it and did a complete computer virus scan as I don’t want to add more bewilderment to my already over burdened distraught mind, but I will look into the USB system when we go into town and get advice from the computer shop as it could be a good standby option.              

 

“Thursday 11 Sept”

 Thank goodness at last back online although its working very slowly and Facebook won’t open properly   

An extremely pleasant day out

Theses Star fruits weigh 480 grams each

It was just 4-30am on Wednesday 3 September when Sumi gently stroked my arm to wake me up after having had a rather bad night again with nightmares, to be honest I did not want to wake up but then Sumi said something which made me sit bolt upright with a jolt when she told me that we would be going out for the day (today Wednesday) instead of Thursday which at first threw me into a bit of a panic as I’d got my mind all into gear ready for Thursday all be it will a little bit of trepidation as we was going to a place that we had never been to before so I wasn’t sure what to expect and just hoped that it wasn’t going to be crowded as that now makes me very anxious.

 

Anyway we set off early and then arrived at a place called (Taman Belimbing) meaning (Star fruit Orchard) it’s an enormous plantation of Star Fruit trees and all you do is to wander round and you just pick the amount of ripe fruits that you want to buy, but you have to get them from the tress using a long bamboo pole with a net on the end! So we collected 10 kilos as with the Indonesian custom when you have been out for the day you always bring something back home for the family and friends to eat! But the Star Fruit Orchard reminded me of back home when we used to go picking for apples, pears, or strawberries, but the Star Fruits only cost Rupiah 10,000 per Kilo, that’s equal to about UK 50 pence or 80 US Cents    

 

After that we drove on to the Dam which is another place that Sumi and I have never been to and what a surprise as it’s a massive Dam that’s supposed to control the water that flows into an estuary to the Sea, but what a pleasant place and apart from the gushing of water as it gushed through the Dam gates and a gentle cool breeze it was incredibly peaceful, I said to Sumi that it was bringing back memories of Home to me and being in North Wales and seeing the Dams and waterfalls there. We sat at one of the stalls and had some snacks and cold drinks for lunch and then just enjoyed the peace and quiet. I said to Sumi that I felt as though the cool breeze was washing away my dementia as my mind felt so refreshed and I can honestly say that I had no confusion although my balance was still a bit unsteady but it was the freshness in my brain that I had forgotten and how wonderful it can make a person feel and to be very honest I did not want to leave the place!

 

We then drove back to town a did a bit of shopping and then went for an early evening meal to a very traditional Indonesian restaurant which is all made out of Bamboo and the roof covered with the stem straws of Paddy which is very much like thatching. There are no chairs just a low table and you sit on cushions on the floor to eat. The food was excellent and we really went to town with spicy Roast Duck, Crispy King Prawns, and something you don’t see in the UK very much now, fresh (Ox Tail soup with the bone and meat in the soup) you can see from some of the photos what we had and afterwards all felt very blotted!

 

So all in all it was an extremely pleasant day out and on my stepdaughter’s birthday as well!

 

This is definitely something we must do again!              

 

When the fruits are very small they are covered in a sealed plastic bag to prevent the insects and birds from eating the young fruits

Getting the fruits from the tree!

The Dam

A very traditional Indonesian restaurant which is all made out of Bamboo and the roof covered with the stem straws of Paddy which is very much like thatching.

Sumi’s drink was a very refreshing Ice cold drink made from fresh young coconut juice with the thinly sliced coconut, some jelly, condensed milk, segments and lots of ice