The past few weeks have been more than extremely difficult for me due to family problems out here ‘YET’ each day I still sit and struggle with the computer and even more so trying to type on the keyboard, when I type it seems as though my brain, eyes and fingers aren’t in accord and my hands just seem to be hovering back and forth over the keyboard waiting for instructions to arrive from my brain but once they do get into action and I start typing what comes up on the monitor has no relevance to what I wanted to type and looks more like gobbledygook hieroglyphics.
I know my eyesight is rapidly deteriorating along with my condition (Alzheimer’s, LBD, and Parkinson’s) which is making typing even more difficult for me as my fingers seem to have taken to a mind of their own and I never seem to be able to hit the right keys, I also get a feeling that all the letters on the keyboard are merging together so when typing I now seem to spend most of my time making spelling corrections, it was suggested to me that maybe I could use a voice recognition system but given the problem I now have speaking without slurring and stuttering my words then it could take all day just to do a simple E-mail, so to say the problem is frustrating would be a gross understatement! So I just have to plod on as best I can with my daily battle “But” that’s just what most of us with any type of dementia have to do every day and there’s no other way forward but to fight back against the monster in the brain…
Life can sometimes be a ponderous uphill battle
I have lived with my Mixed dementia (Alzheimer’s, LBD, and Parkinson’s disease) now for 10 years “BUT” and there’s many a “BUT” in any type of dementia, and the most important one to remember is that there is still life after diagnoses.
Yes our daily life can sometimes be a ponderous 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, so don’t let the illness be your master as we can still be master of your own destiny with positive thinking…
Yet now with Christmas and the festive session almost upon us 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 river of life is becoming murkier and leaving me with only faint shadows of my past, it’s as though my eyes are coved by a shroud from any past prosperities in life. Now I sit and look at my family photos of when my children were young trying to evoke the memories of many Christmases past when Dementia was the last thing on my mind.
Maybe one day a cure will be found for this terrible illness (Although not within my lifetime) so until then we must keep on fighting to overcome the ponderous chains of the day that we must endure upon our shoulders…
“A daily fight with emotions”
“I first wrote this back in January 2006 a year after my diagnoses”
“A daily fight with emotions”
When you are first diagnose with any type of dementia nobody and by that I mean not even the doctor, specialist or neurologist tell you anything about the daily encounter your will be facing with your own emotions whelming up inside of you and almost tearing you apart.
Then this morning I caught sight on myself in Sumi’s dressing table mirror which made me abruptly stop and look deeply at the figure gazing back at me to see if I could observe any physical changes in my being after my first year with this terrible illness.
I looked deep and hard, but all I could see ‘then’ was what I take to be the normal physiology of “Me” my body size and weight are still looked the same, I don’t think that I appeared frail, when looking in the mirror I didn’t seem to be slouching, neither did I notice any agitation in my limbs, although I must admit that my eyes appear a bit shallow with slight bags under my eyes. So why is it when Sumi and I go out walking that people keep staring at me as though I have two heads or some other type of terrible physical problem? As to my mind I am still perfectly OK...
“And now some almost 10 years on in November 2014”
Yes I know I have “Mixed Dementia” yet I can still perceive all the changes taking place in my mind and body day after day, I can still feel all the anxiety, stress and anguish every moment of every day, and I know that at times I can become extremely frustrated and especially when typing and constantly mistyping and incorrectly spelling words, and I can still tell when I am becoming anxious from excessive noise and other irritating sounds that vibrate through my brain like a pneumatic drill, and I can still realize that I lose the thread of things that I am saying or even as I’m typing them... And despite what I thought I saw in the Sumi’s mirror 9 years ago Sumi tells me that now I do slouch and stumble when I walk, so much so, that I have to use a walking stick and cling onto Sumi’s arm to maintain my balance, and Sumi said that the only other really noticeable thing that would indicate that I have a serious illness is in my speech that’s now getting worse and especially when I am fatigued and I can’t find the right words to say as they all get lost in the mass of incomprehension in my brain.
At times I can become extremely irritable ‘or maybe it’s just the frustration that comes with this illness’ things that I could once do so easily now seem to defy my brain and ability, just this morning I was trying to do some internet banking ‘BUT’ got in an absolute mess of utter confusion and bad-temperedness then the emotions started to get control of me and Sumi said I started shouting at the computer screen as to (WHY, WHY, WHY, Can’t I do this anymore) and sat with my head in my hands, my heart pounding, almost in tears and physical shaking, then when I sit eating my meals which now is normally with a spoon and fork (as I have forgotten how to use a knife and fork) I seem to miss putting the food into my mouth so end up with it in my lap or on the floor ‘Yet’ Sumi never complains she just cleans up after me, normally when I have moments or problems like this Sumi will try to calm me down and give me a calming pill, although, she has also said that sometimes I am best left alone to let the emotions fly and get them off my chest and not keep them bottled up inside of me! But at times like this pray tread gently upon my ground!
These are some of the things that the doctors, specialist, or neurologist don’t tell you about, neither do they tell you that if your emotions get the better of you (which can happen almost within the snap of the fingers) that you can lose all control of yourself and without realizing its happening, this sometimes happens to me and I can fly into a rage for what might appear to be no apparent reason, the only reasoning for it happening is lodged somewhere within the labyrinth of my now extremely confused brain ‘yet’ not even I can find the logic!
It seems that some people with this terrible illness lose all their awareness exceptionally quickly, but why is it that some of us can still be almost fully aware of what’s happening in what I call the “Knowing” and it’s the ‘Knowing’ that really gets to me as that is tremendously hard to fight against, ‘Yet’ we can’t do anything to avert the problem, except fight against it, fight against it…
I have to be very honest with you all and with myself when I say that I now realize that I am losing control over my agitation and especially with regards to my hands which now constantly tremble and I’m sure that’s why I recently had the problems with my computer as I can’t keep my hands of fingers steady so I keep pressing the wrong keys or clicking in the wrong place with the mouse!
It’s also a problem trying to use my cell phone as again my fingers can’t swipe the screen the just seem to be tapping the screen so the wrong pages keep opening and making me even more confused, seems that I’ve lost that feather like touch that I used to have with me fingers when decorating cakes during my past working years, and as the day progress towards its climax and the waning of the sun so does the tremor/agitation become more intense and then I get the feeling that my whole body is trembling and shaking like a jelly! Often Sumi will say to me (Are you OK?) to which I normally reply (not to worry I’m just having my personal earthquake!
It also becomes a problem trying to use any of the remote controls for the TV, DVD player, Satellite TV decoder, Stereo player and the Air-conditioner controls, but thank goodness as of yet it hasn’t affected me from using my big cake mixer!
The problem is that no matter how much I try to control it there’s no abating the problem so quiet often I sit with my hands tightly clutched together which at least seems to reduce the problem, but this sort of thing can be very annoying to the point of being embarrassing when you out and having a meal, but it’s just another of the problems that we have to learn to deal with in our own individual way when you are living with any type of Alzheimer’s and Dementia and believe me when I say that if you have Mixed Dementia with Alzheimer’s, LBD, and Parkinson’s disease as I do then the problem can be even more apparent and causing other people to gasp and stare which can be very off-putting!
‘Dante’s Fiendish Inferno’
Not so sure that I’ve had a good start to my morning, as when Sumi and I were going for our early morning walk at 5am I was trying to talk to her about some e-mails that I’d received but every time I tried to speak I had to stop walking as I could not coordinate my speech and walk at the same time and I kept losing my balance and kept slurring and stammering my speech.
Sumi was trying to pull me along which only made me more confused, and then neighbours kept wanting to stop us to say good morning and talk, I can appreciate their sentiment in saying good morning but they could not see the adverse affect it was having on my speech and walking and making me lose my balance from the constant faltering in walking and forgetting what I was talking about.
To be very honest I got extremely wound up as my brain was going in circles and I felt as though I was walking through a desolateness of time wherein life and fighting the illness had no meaning, Sumi could see that I was having a problem and asked ‘what’s wrong’ I replied that to be honest at this moment in time I feel as though I’ve had enough and just want to sit down and die as living like this day after day (If you can call it living) is like living in the ‘Dante’s Fiendish Inferno’ whence you lose all your will to want to go on!
So you can see from what I write that just like others with this terrible illness I also have some terrible days which are now happening far more frequently and I can find it very difficult to put a brave face on life! “BUT” this can be the reality of our illness that not everyone wants to hear about!
“Being Self Aware!”
The Days, Weeks, Months, Years, are somewhat terrifyingly flying by and its now well over nine a half years since I heard those terrible words (Sorry Mr Barry but you have Mixed dementia with Alzheimer’s) and one of the things that I’m finding extremely hard to deal with at the moment is the “Self Awareness” and the knowing that my condition is deteriorating “YET” I am helpless in being able to prevent it progressing.
I’ve just had a few days rest from the computer “but” now I find that I feel worse, and I keep misunderstanding things that are written, or spoken to me as my brain can’t decipher what’s being communicated, my eye sight is failing and when I read things all the words just seem to flow into each other and get jumbled up in my mind, and according to Sumi my hearing is getting worse, as often when she speaks to me I don’t hear what she has said ”Yet” the slightest little noise makes me jump out of my skin. My body is becoming far weaker and I have a problem to place one leg in front of the other when walking, even trying to stand when getting up from a chair is a problem as my body doesn’t want to respond! I can sense every fail faltering moment within every moment of my day, my short term memory has since departed my brain and now the once long term memories of my past that I could once still recall are following...
I know that my condition is going to slowly worsen ‘But’ why is it that some of us still have this “Self Awareness” of what’s happening to our mind and body ‘which to be honest’ can become almost like a daily torment to the mind and soul.
Don’t get me wrong but on the one hand my mind and body is saying (I’ve had enough, I surrender) ‘Yet’ on the other hand it’s saying (Don’t give in to the foe pounding on the door of perseverance) but just how much perseverance can a person have whilst continuously struggling against the “Self Awareness”
“I’m exasperated in so many ways”
Maybe I’m just having an “Off day” as:
“I’m exasperated in so many ways”
I’m feed-up having to be dependent on other people to do things for me, like drive and take us out shopping...
I’m disturbed by the constant horrific nightmares night after night,
I’m maddened at the constant unyielding bewilderments day after day,
I’m frustrated that despite my efforts at the complete unawareness of my illness around me and within this country,
I’m annoyed at people staring and pointing at me when we go out shopping,
I’m infuriated at the difficulty I have walking that makes me drag my feet as though I were wearing concrete boots,
I’m frustrated at not having a scrap of ‘On the spot’ support for my dear wife and myself,
I’m furious at the extremely high cost of all my medications and doctors fees that we have to pay every month,
I’m infuriated at people who keep saying to me (Oh, I know just how you feel) yet they don’t have an inkling of understanding about the illness,
I’m exasperated at people not letting me finish a sentence when specking and then trying to finish it for me,
I’m aggravated at not always being able to comprehend what people say to me,
I’m irritated by other people that keep interrupting when I’m speaking or typing so that I forget what I was talking about or typing,
I’m wound up at my body constantly shaking like a leaf,
I’m frustrated at no sooner has my dear wife told me something than I’ve forgotten what she said,
I’m annoyed at other people saying to my dear wife (What’s wrong with Barry! He looks alright to me!) But they can’t see or feel the daily confusions in my brain,
I’m wound up at my dear wife having to constantly explain about my illness to our neighbours and other people,
I’m frustrated at not being able to eat my food properly with a knife and fork,
I’m infuriated at not being able to go out anywhere alone,
I’m aggravated at looking outside the house at our new car but now can’t drive it, as now I would love to just go for a long ride anywhere just to get out of the house and to be far away for my dreary surroundings,
I’m exasperated at my lose of attentiveness and concentration when trying to type at the computer or do anything such as baking,
I’m depressed at my lost ability to communicate coherently without stammering,
I’m furious at my absent-mindedness of people I once knew,
I’m angry at my condition and my personality changing more than the weather,
I’m incensed at the illness constantly warmongering upon my daily intent,
I’m annoyed at the constant noise around me which then causes affray in my brain,
I’m feed-up at having to take medications 3 times a day and day after day,
I’m fractious at having to control my daily diet because of the diabetes that dementia invited to the unwanted party
I’m frustrated that the romance part of my manhood has disappeared and “Yet” I can still feel the inner emotions and desires that now no longer respond,
I’m exceptionally up-set at looking at the deep anguish in my darling wife’s eyes all the time and seeing her cry as she knows not what our future together holds,
And I’m annoyed at this illness taking my once fruitful life away from me...
“BUT” as of yet, I’m not giving up on life...
Another bad night
I had a terrible night sleep and yet again Sumi had to wake me up when having another nightmare, she said my arms and legs were thrashing all over the place but at first she tried to just let me sleep through the nightmare thinking I would calm down, but then apparently at one point one of my flying about arms hit her on top of the head so she tried to wake me up but she said that no matter how hard she was shaking me at first I just could not come out of the nightmare and wake up and kept shouting out gobbledygook, finally she got me awake and I jumped out of bed terrified and apparently quiet verbal about being woken up!
I wandered around to the bathroom all be it almost lost and then we went for a walk, but as we walked along Sumi said she felt as if she had to pull me along like a lead weight following behind her as my limbs had no energy in them I was and still feel utterly exhausted, at the moment its one of the days when all you want to do is to give in to the illness and just let it triumph over your day! BUT we mustn’t do that as no matter what, we must keep fighting on, although you get to the point of saying (How much more of this can I take) as this illness is relentless and never gives up or allows you a moment of peaceful compassion…
I have to admit that my nighttimes’ and problems are getting worse and by that I don’t just mean the (Nightmares and Hallucinations) as what was just an occasional accident with (motion incontinence) has now become a tightly occurrence and without me even knowing it’s happened until I wake up in the morning, so now every night I have to use (incontinence pads) otherwise Sumi would be continuously changing the sheets! And now I start to wonder if the incontinence has any correlation with the nightmares!! But fortunately as of yet I don’t need to use them during the day time of when we go out shopping...
Yes I do find it a bit undignified but I must think of Sumi as she has enough to contend with and all my other problems, but I had to laugh last night when our granddaughter was cuddled up on our bed with us and turned to Sumi and asked (Nanny why is Grandpa wearing baby pampers!) what’s the saying (Out of the mouth of babes)
My Demons of the night
Sumi has just been telling me that last night was another very bad night as apparently I had only just dropped off to sleep when she said that my body, arms and legs where thrashing about on the bed and then I started shouting out loud although Sumi could not make out what I was saying, she woke me up and made me sit on the edge of the bed to drink some water and asked me what had I been dreaming about, but I had no recollection of the actual nightmare apart from being able to say that it was horrific and awfully graphic, she settled be back down and I must have drifted back off to sleep but it couldn’t have been for more than a few minutes when she was having to wake me up again having yet another nightmare which now seem to be getting worse and occurring every night and I can tell that my sleep disturbance is making Sumi very tired from lack of her own good night’s sleep yet she never complains.
Theses nightmares or what I call the demons of the night utterly drain me out and quiet often I wake up feeling totally exhausted yet I can never remember “why or what” I was hallucinating about it’s as though such moments in time never existed yet my daily exhaustion tells a different tale and if it wasn’t but for Sumi I would not have even remembered any of the nightly events.
I know that there’s not much we can do about the nightmares although there are some medications to help lessen the problem although like most Dementia medications they done work for everyone which I can attest to so I just have to accept that they can be part and parcel of my Alzheimer’s and Dementia, yet I still think that I am better off than many others with this terrible illness so I just put my Alzheimer’s and Dementia down to being a mere dropped thread in the tapestry of my life...
Infringement of human rights
(JAKARTA - Internet Service Provider (ISP) in Indonesia blocking one free video sharing website, ie Vimeo.com.Vimeo website is blocked by the government as pornographic.
"The report from the Trust team that Vimeo explicitly contain pornographic content. Teams Trust gives instructions for unblocking Vimeo," wrote Tifatul Sembiring in tifsembiring Twitter account this morning.
By blocking this, most of the netters country protesting the closure of the website. A Twitter user baghendra convey chirp with her mention of the Minister of Communication and Information.
"Supposing there are rats in the granary, barn which then must be burned Then people eat what?," Chirping baghendra.
There is another chirp from ADemiawansyah Twitter account, he said that Vimeo.com system similar to YouTube, but the question, why are blocked only Vimeo.com?.
"Sorry, sir. Vimeo has a system like youtube, they simply provide a place sharing. Block the uploading user, not the web," said ADemiawansyah.
Current, Minister of Communications and Information deliver the latest chirp on Twitter. "We wrote to the manager to close konten2 http://Vimeo.com categorized pornography. Mudah2an they take very well," said the former president of the MCC.
Sharper response submitted by denyswidjaja Twitter account. "Mr. tifsembiring why gentlemen aja ga cpc block youtube? And why engga dimatiin internet instead? Block user should pack its not!," He said.)
This is an infringement of human rights and I agree why just bock Vimeo and not also YouTube! Now those of us who have Alzheimer’s and Dementia out here in Indonesia can’t view motivational talks for people who have this terrible illness or for those of us with the illness that are trying to help and motivate people who have been newly diagnosed. There are now over 35 million people Worldwide with some type of Alzheimer’s or Dementia although that doesn’t include Indonesia as nobody knows how many people in this country of over 200 million people have dementia, neither do they acknowledges the illness out here it’s just shrouded in Stigma
If the communication authorities in Indonesia are going to do things like this then they need to get their own house in order first and control some of the content that’s on the local Indonesian TV and Satellite stations some of which is total unsuitable for children