More than two years have passed… and I’m still here… but now I’m starting to live again!
Lost, confused, unsure, unclear, perplexed, disorientated, bewildered…. these were the words emblazoned across the many leaflets I was given: Help Beat Dementia! Yes..yes…Yes! There was hope, somebody was there to help me! The first leaflet was for Carers… are you looking after someone with dementia? The second… was one of the many charities asking for more money; there wasn’t any information to help me to deal with my Dementia! Where were the leaflets for us, the ones suffering this, no-hope nightmare!?
I have seen so many leaflets, I think I may be developing an allergy. The leaflets seem to roughly fit one of two groups. The first group, leaflets for Carers, anyone looking after someone with Dementia and the second was try to get money! There was, there is, a distinct lack of information for me and others like me… anyone personally suffering with the symptoms that is Dementia.
As I started to read more, the more I became aware that there are so many misconceptions regarding what is apparently understood and widely accepted as fact in regard to Dementia, or I should say, the symptoms that impact my life. Nobody wanted to talk to me, nobody wanted to record what was happening to me, nobody wanted to really help. It seemed that being diagnosed with Dementia meant, ‘You have passed a point of No return!’ There wasn’t anything to be done, in fact there wasn’t anything that could be done. It was now in the hands of the ‘Carers’. It was too late, for me!
Feeling so frustrated, so alone, so patronised… I was so angry! I realised that surely I can not be the only one feeling like this, there have to be others who are still here in this world and still able to have a part in their own life. I wasn’t ready to let go, to take that step over the edge of that cliff into oblivion. So, I started researching Dementia. Reading everything I could find online, buying books, of which there are many, very many and all online related material, such as heavy research papers and the lighter, but often a lot more informative, TED lectures and the almost ubiquitous YouTube. One of the things I became very aware of, which had nothing to do with what I had read, watched or listened to, was that the mere process of what I was doing, was helping me; a few embers flickering in my brain felt like they were starting to burn a little bit brighter!
At the start it was just a mess, a lot of stuff, not really for me, but I’m not really sure who it was for. I would go from one moment of, ‘ok, I understand that’ and to the next moment of… ‘bugger!’ There’s so many contradictions in research, it just seems that there is no real consistency in how, or what is researched and findings, if you can find them, are not intended to be readily understood, by a mere mortal like me. However, anyone, with a bit of patience and tenacity can get it down to a meaningful paragraph. I think all researchers should try this as a matter of course; end with a paragraph, or two, bringing their findings to clarity for everyone? Some do and you find a really good summary!
One of the first things that struck me was how people see Dementia. It seemed that more thought Dementia is something you catch, like Flu, but just like Flu, the symptoms may be similar in many cases, but the causes are often different, or can be. The term Dementia needs clarifying, because until we agree and understand what it is, we can’t deal with it. I’ll leave it for now; this will be my next post: Dementia is Not…
Terry Pratchett quote; ‘Before you can kill a monster, I always say, you have to be prepared to say its name.’
Now, back to me and what is different in my life. The first thing is Apples. I don’t mean apples you eat, but Apple’s little devices, like the iPad, phone and watch. I know there are other brands and I’m sure they are just as good and hopefully my experience will still be applicable whatever little devices you play with!?
One of the many problems I have is that of being organised. Doing things at a certain time, the mundane like, eating times, making sure I take the tablets and the right amount, appointments, people visiting, to the horrible, but vital things like, changing the leg bag, checking the IC pads and the list goes on. I need consistency, regularity and a well structured day. Anything that happens, that I’m not prepared for, causes me major problems. I don’t mean just a bit of inconvenience, I mean heart raising, minding blowing, to panic attack levels very quickly and meltdown for the rest of the day. I know this may seem crazy to many, in fact after the event, and I’m back to so called normal, I too think that it is crazy, but I can’t do anything about it! It is a response that my brain decides is what it needs to do. So this is where the Apples do me good. As I said, I have an iPad, a phone and watch. On these there is a program, called an App which is a Calendar. I used to have a diary, which in effect is a calendar, at school and in this is where I would add everything I had to do and when, appointments that were coming up, meetings, reminders and notes. I use the Calendar app on my devices in exactly the same way, but it does far more. The Calendar app is on my iPad, iPhone and watch, but more, my daughter and son have the calendar app on their devices too and we are all connected. So how does it work? The Calendar looks like any other diary/calendar and all my daily activities have been typed in ie, 8am it’s time to take your morning tablets. Everything is there and can be added to, deleted, or amended at anytime but, here’s the good bit, when it’s time for whatever, my iPad gives me a message on screen telling me… it’s 8am and time to take your tablets, my phone also repeats that information too and my phone… love my phone, it vibrates and really makes sure I’ve not missed the message. Everything I do is covered by my Apples and as long as they are ok, I am too… see Apples are good for you! My son and daughter can even make amendments. We are all synced. This is just one of the uses, but it is a major part of my life, in fact I don’t really know how I would cope without it and maybe that is the only downside. The thought of not having it does scare me. The iPad is attached to my chair and is on all the time, with the calendar showing what is coming up and current events. This helps me with organising my life and the process of doing this helps me, so I would suggest start having a go using a diary/calendar, it can’t do any harm and may be a great help.
I read every day now and make time to do this… again using my Calendar… I set time aside where I sit and read. This is fiction and at the moment I’m just starting the Terry Pratchett, Discworld series. I’ve listened to many of his stories, but I want to start reading as this requires brain power. You not only have to make sense of the words, you have to follow a sequence, remember what is happening, imagine what may happen next and develop a fictitious world that the author has created. A lot of brain power needed. I did listen to stories and still do, but reading is something else. My next task, after I have read a book say, The Colour of Magic, I will read it again, but doing so at the same time as hearing it read as an audio book. This really is an amazing exercise, it builds your concentration, and you do have to concentrate, it improves your reading rate and helps you build reading skills and imagination; great for the brain! Well it works for me!
Exercise; well I did used to go out. I developed a plan that I called, ‘Doing a Marathon Every Week.’ It is very simple, let me explain how I did it. The first month; I started out and covered a mile. This was a circuit that started and finished at my door. However long this took, I recorded the time. Then, over the next month, I went out at the same time, regardless of the weather, did the same circuit but, I tried to improve the time. I did not set out to do this as fast as I could, I did not want to be shattered after going out as I knew, if I did it too hard, I would not enjoy it and very quickly I would just give up. The second month, same circuit, but this time twice and over the following month, try and slowly improve my time. The third month, same circuit three times and I guess you worked out what was expected for month four and five? I was surprised how I was looking forward to getting out to do the challenge and always amazed how it was making me feel. I did this Monday to Thursday, then on Friday I did six circuits, so in total, 26 miles, a marathon! I think anyone, kids before school, to us slightly older and retired, can do this. The difference it was making to my day was amazing. I was sleeping, eating and thinking better. It doesn’t take long! I did this in my wheelchair. It is a special wheelchair called the, Mountain Trike; a great bit of manual wheelchair!
However, I haven’t been out for a long time. My neighbour moaned that my dog was making a noise when I was out. She didn’t have the decency to tell me, she shoved a nasty unsigned note through the door. I can not explain the anguish this caused me. I was so angry with her, but so concerned that Finn, my dog was stressed. My son set up camera to watch him and he slept the whole time I was out. This didn’t help, I couldn’t get out, something was stopping me and now I’m stuck. I know it sounds totally illogical and I agree, but it is like something inside. I panic about someone at the door, someone passing the front window, or people in the garden, that I don’t think are even there… thank you neighbour. One on my next challenges, with the help of my son and daughter, is to get out!
The next thing is meals. This is straight forward, but may be a bit radical for some, but it seems to be helping me. I now have a low carb diet and I go through what is called an intermittent fast every day. Not as bad as it sounds. I don’t have anything to eat till after 12pm. I eat normally, as long as it is low in carbohydrates and I do not have anything to eat after 6pm. So you can see, that I don’t eat for 18 hours a day, this is the intermittent fasting bit. The morning is not a problem, in fact it goes really well, with my calendar keeping me on task I have plenty to do. If I was just me sitting around thinking of nothing but food, or listening to the telly blasting… ‘did somebody say just eat!?’ then it might be a different matter.
Every day, for an hour I have a task, it might be painting something, doing a bit of cleaning, doing my washing, but I find this drags me from any slumbering I might find I’m drifting into and I feel great and self righteous when it has been done. It’s a good boost and it all helps me stay me. Having these one hour slots works for me. It stops me looking at everything, all in one go. Many of the things that have to be done, just seem like a mammoth task, but having just an hour is so good. I do it, feel good about it and then get on with the next thing. In a year, that is 365 hours, that’s equivalent to about six weeks of 12 hour days in total! Wow!
As for the telly, well I still watch it, but I don’t sit there just watching moving pictures every moment of the day. I’m becoming more selective and often my daughter and son will discuss something that has been on, or coming soon. We then discuss the outcome. I do find I like to watch a whole series. I find I will wait till a program has been on the telly and then watch it on catch up. I think this helps me in following the storyline and I find I become more engrossed with the whole thing. I’m certainly enjoying the telly more, rather than it just being on… does that sound familiar?
I now take daily supplements of vitamins and minerals, again these are selected after looking into the possible benefits of certain types. There are lots of vitamins and minerals on the market, all stating that they are good for you and your memory, but believe me, this can become a very expensive route to follow, when there is very little to back up their claims. I’ve decided on the following products, after spending time to research, comparing products and look into the companies providing these products. I am taking these to see how these benefit me and I’m sure I will be modifying my selection and use as this progresses. So here is my list…
In no particular order:
Turmeric Curcumin 600mg
Multivitamins and Minerals
D3 4,000 iu
Omega 3 1000mg
I’ll give a breakdown of these supplements on a later post, if requested?
Finally, the most single dramatically impacting event of my life so far, is coming off Morphine. The more I looked into the medication I was taking, the more it seemed to me that certain types of medication could be having a major impact on my life. Why did I decide on Morphine first, from everything I was taking? Well, it was when I realised I was taking it to make me numb, to calm me down, to make it possible to go out and not for pain. I’ve been slowly reducing the morphine over the last 6 months and this is the first month, in a long, long time, that have not taken any morphine. I can not say it has been easy and I certainly have more pain problems, but I can deal with those. Starting this final month, I’m fuzzy headed, feeling heavy and still have those continual cravings. I don’t think that will ever go away but, my daughter said something and it was then that I realised, I would never take morphine again. She said, ‘You are not the same person as I knew then.’ I think she meant that in a good way. I’m now committed to removing all the medication I can and as soon as I can, so the next two years or so are going to be interesting!
Medication and the medical profession is another one of those subjects I have a comment to make about, so I’ll save it for another post.
Everything I do now is based on anything I have learned and discovered in the last few years and still learning. I suppose the biggest question is, has it helped? To that I can answer a resounding yes! Anyone in the place I was in a few years ago, would have been depressed, suicidal and feeling the excruciating pain of that dark and futile existence. Now, I’m starting to look forward, With the continual help of my daughter and son, I’m starting to take control of my life. I certainly have a long way to go. Day to day I change and never know what, or who tomorrow will bring, but I think that may be that is the same for most of us!? Depression is a major problem and hurdle that I have to get over.
The hardest thing I find, is trying to pretend all is normal in my life. I don’t want to be different, because if you are different, then people start to treat you differently.
My particular symptoms are unique to me, or that is what I am told, and this led to the medical profession to diagnose me as suffering with, Mixed Dementia, but what is Dementia, what are those symptoms and are your’s similar to mine, or a bit different?
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