Norrms Blog

[norrms]

Sleeping (Or Not)
With
LEWY BODY`s

As I start to write this its 6.32am, been out of bed for a while now, been awake off and on since 4am. Elaine has taken the washing down to the laundry, done the polishing and I am on my second drink of the day. It’s quiet in our house at the moment, a lot quieter than it was a few hours ago when screams pierced the night air and the nightmares came thick and fast.
This is just another night living with Lewy Body`s.
As soon as I closed my eyes last night the dreams came and went. Images of people’s faces, young, old, happy, distorted flashed in front of my eyes as if my dreams were being put on Fast Forward. Horrific pictures of terrible things burnt into my memory so much so I can remember every detail the day after. During the day I get flashbacks of these happenings which drag me even further into the mire of Depression.
So cruel is this disease of Dementia that it takes away my happy memories and replaces them with those I try to forget!! In my dream state, in the corner of me eye I see a shape coming towards me fast, I try to run but my legs turn to lead, whatever it is gets closer and closer until I feel myself lashing and kicking out, screaming, yet no noise emerging from my lips.
And yet, as I awake, the noise coming from my vocal chords strains at my throat and the scream reverberates around our small bedroom, bouncing off the walls. Elaine is holding me in a vice like grip, and gently begins to rock me as my body shakes and heaves up and down with breathlessness. The rest of the night is not really sleeping. I drift from dream to dream, jumping, twitching, kicking my legs and talking in my sleep yet making no sense. Elaine is by my side, she`s not really sleeping either, just lying there listening to me and making sure I am ok and survive the night terrors that plague me.
Then, as dawn breaks, there doesn’t seem any point in staying in bed any longer. So here I am, telling you my story, as I have before. When will this story ever end? I do not know, but the point is this story must be told and must be shared, because if it isnt told, how will we ever learn? Please don’t pity me, this is my lot, these are the cards I have been dealt, and every morning I wake up and sit down here on this computer is another day I will fight as hard and for as long as I can to raise awareness about this awful illness dementia. I only wear one hat, it doesn’t bother me which kind of dementia it is, Alzheimer’s, Lewy Body’s Vascular, the point is that one day we see a cure for all types of Dementia.
And I for one will not rest until that day comes, even if I could!!!!!!!!!
Norman Mc Namara
Diagnosed at aged 50, now 54years old, tired but still fighting

[norrms]

Hiya, this is an article in todays Guardian about the website i helped with and advised on. My friend Richard Gleaves explains why its here and how we hope it will be rolled out all over the country, i hope so as i think it could help so many, best wishes, Norrms and family xxxxx

http://www.guardian.co.uk/public-leader ... ehind-data

[norrms]

Time and Tide
As they say, Time and Tide waits for no man, and how true is this? Thing is, unfortunately, until they find a cure, neither does Dementia of any type.
In just this last month I have had my medication upped once again , three times now in as many months (More or less) and also have had my “Crash Mat” delivered last week which now resides next to our bed to stop me hurting myself during my night terrors and falls from bed. Now, even the most optimistic person will have to admit this is not a good sign.
As I sat there last night on the edge of my bed, my feet just touching the “New Mattress” it suddenly hit me that this thing on my floor wasn’t there a few weeks ago. The amount of tablets I had just taken has almost doubled in the last few months and by powers of not so amazing deduction, this meant I had slipped into a later stage.
GOD I HATE THIS DISEASE!!
My mind wandered back to Christmas just gone, and all the hopes and dreams I had for the future, only to be smashed within three months by this GOD AWFUL ILLNESS!! It’s no use kidding myself, I am getting worse, I can’t hide it any more (And people with Dementia are very good at that!!) The evidence is here right in front of me!
I have also noticed lately that more people are asking me to repeat what I have said as they don’t quite understand me; this was also a common trait in the early stages of my illness before they gave me meds to combat it.
June Brown AKA actress “Dot Cotton “once said, Lewy Body`s is the worst disease of all , “It’s not just having it, its knowing you have it as well” and how right she was. I can see with my own eyes that things are getting worse, I can see the tears welling up sometimes in my “Angel” Elaine’s eyes as I do something yet again that is “Out of the ordinary” or I have forgotten something for the tenth time!!
MY GOD WHEN WILL THIS EVER END!!!
Where will this end? Nobody knows, when will they find a cure? Nobody knows that either, but there is one thing I do know
I AM NOT GIVING UP JUST YET!!
Just this week I launched the “GROWING MEMORIES “campaign, please contact me if you want to know more, and I also have another idea “Up my sleeve” to raise awareness which will hopefully not only help those with this awful illness but also their loved ones and carers as well. But I do need to know, if ever I am asking to much, please please tell me as I will “Reign it in a bit” as Elaine always says LOL

So, the fight goes on my friends
THANK YOU FOR YOUR NEVER ENDING SUPPORT
LOVE NORRMS AND FAMILY XXXXXXXXXXXXX

[malc]

i don't know how you have the fight and strength to write the world famous "norms blog",my wife as alzheimers and struggles with the basics ie living,scared to go out,scared to sleep and the many other symptoms that i don't need to mention to you the expert,it will be a very sad day when the blog is no more,you have been an inspiration to so many people norms sufferers and carers alike,THANKYOU!!!!!!

[norrms]

Actually its thank you Macl for taking the time to reply while your loved one is so ill, all our love and respect, Norrms and family xxxxxxxx

[norrms]

VIDEO MESSAGE FROM ME
Hiya, please take a look at this as this is my reply to yesterdays press release by the Dept of Health which was headed "Transforming Lives" if you want to google it, i commened on it yesterday and promised a video, here it is xxxxx
http://youtu.be/AbiHS3OeueQ

[norrms]

Last Night`s
Horror Show
The feeling of emptiness within my mind about an hour or so before going to bed was not a good sign. I sat there; quiet and unresponsive to all and whatever was going on, God only knows what was on the television, but to bed I went, 9pm as usual, accompanied with my headphones on listening to Palm FM.
I love any type of music but I kept changing radio stations as I was convinced I didn’t like anything I was listening to, and found myself becoming more agitated. Around ten PM my “Angel” Elaine came in and we tried to settle down moments later. In what seemed “Nano” seconds to me (But actually an hour or so), the Horror Show “started.
Images of people seemingly going about their business flickered across my eyes, cars, buses, planes and trains ploughed through the nightmare with ease, taking everybody and everything with it and I found myself screaming warnings, shouting at the top of my voice and my arms flaying about windmill like! My legs ran as hard as they could so I could try and warn people of the oncoming tragedy but they just turned to lead as I strained to put one foot in front of the other.
The outcome I will not write about, but needless to say it wasn’t a happy one. In my dream I just looked on in horror and screamed as loud as I could, if I am honest with myself it’s not a sound I have ever heard before and if I did I would say it wasn’t human. I have tried to re-enact the sound but I am physically unable to. My angel held me tight, dried my tears and the beads of sweat from my face and settled me down again for the night. Within minutes it had started again!!
This time I will not recall what happened as it was very personal, but also very real. What I can say is during this night terror I actually said to myself “This must be a dream and not true, it can’t be!!” I was actually dreaming within a dream, a first for me and very worrying!!! Once again the outcome was horrendous and once again my Angel and saviour were there to help me and calm me down.
As I awoke, eventually, at break of dawn I have never been so relieved to the rays of daylight streaming through our windows. Elaine’s hand immediately stretched out looking for mine as she whispered “Are you ok Norrms? Are you getting up now? I Whisper back “yes” and gently kissed her on the cheek, she looked so tied and yet so grateful to at least get a little interrupted sleep without my agonies of the night disturbing her, for an hour at least.
Never before have a described the contents of my dreams but I do believe that we have to talk about these things because it could be your partner/loved one, relation that is going through the same as me. I hope you don’t mind me sharing a snapshot of last night, and please believe me when I say it was only a snapshot, but hopefully it will help some understand what people with DEMENTIA have to endure sometimes, even though they don’t talk about it.
Love to you all, Norrms and family xxxxxxxx

[Myrtle]

(((((((((((((((((Norm)))))))))))))))))

[norrms]

Secrets and Lies
SECRETS AND LIES
Sometimes I sit here and evaluate my life living with Dementia so far and how we have dealt with it. Sometimes it’s a good outcome, sometimes not; it depends on my mood I think! There is one thing, no matter what I think about, is the Secrets and Lies that’s connected with this awful illness dementia. I think that’s why I campaign as hard as I do, because the more I learn, the more questions there are, this is what I mean.
Secret`s
When I was first told I had Dementia I was advised to “Use it or lose it” and sent on my way!! If I had just been diagnosed with Cancer or HIV would they have said the same? What were they holding back? What SECRETS did they hold about this disease? As time went on I realised that not only was there nothing in place for somebody like me aged just 50yrs old with this kind of diagnosis but nobody talked about it openly?? WHY NOT? Was that a SECRET too? All I learned about this awful disease I learned via the computer but here are something’s I had to find out as time went on.
1, sometimes when I walk into the room and see my Angels face, drawn with worry and trying to figure out the best way forward for the future, what am I suppose to say? Do I say I am sorry? Do I pretend I haven’t seen her? Do I lie to her and say everything will be ok when quite clearly its not going to be? Nobody told me this would happen!
2, Never having lied to any of my grandchildren, when they ask “Grandad, are you going to die soon?? How do I answer that one? How do I look them in the eye and say “Not to worry, I am not going anywhere “ How do I look at their wonderful innocent faces and tell them that I might not be here to see them grow up, or see them married and have children of their own? Nobody told me this would happen?
3, When my Angel holds me so tight and whispers “What am I going to do without you?” How do I answer her? How do I calm her fears and trepidation? Nobody told me this would happen!
4, The nightmares, the hallucinations, the constant pressure of always being in the wrong, getting nothing right, dates, times, remembering holidays and places I have been!! WHY DID NOBODY TELL ME THIS WOULD HAPPEN??
ALL THESE SECRETS AND MORE!!!
WHY ARE THESE THINGS NEVER DISCUSSED??
LIES
Well, where do I start??
1, It’s only an Age related disease? Err excuse me????
2, it’s contagious? Yes some people walk away from me as if I have the Bubonic plague.
3, I don’t LOOK LIKE I have dementia?? Please explain to me “What does somebody “look like “with dementia.
4, it’s no use talking to him/her as she/ he won’t understand you?? Please tell me how do you know that?? When did you pass your degree in matters of the mind?
5, Just dress them in anything, they won’t know ?? Again, how do you know this??
6, A member of my family has a “Touch “of Dementia, that’s just like saying my sister is a “Touch Pregnant!!!
7, Dementia comes on suddenly!! NO IT DOESNT!!! Its actually a Critical chain of events that lead up to the later stages, its just all about becoming aware of the signs.
8, and the biggest one of all, its all about losing YOUR MEMORY!!
NO ITS NOT!!!
It’s about losing your lifestyle skills, your ability to walk properly, to talk properly, to count money and understand the simple tasks of life which you wouldn’t normally give a second thought to. Its about putting the milk in the oven and the hot cup of coffee in the fridge!!

SECRETS AND LIES, EVERY ONE OF THEM, with a lot more besides.
My dear friends, until these secrets and lies are stopped, until the truth comes out about this awful disease and until each and every one of us stand up and shout`s that enough is enough!! We will struggle to overcome something we are in the dark about. No more should we hide in the shadows and whisper about Dementia. No more should those of us who have this disease be looked at as if we have two heads!! And no more should this disease be the Silent Enemy! Because I for one will not go quietly and will campaign long and hard until there are no more SECRETS AND LIES, Just
TRUTH AND HONESTY !!

[Jane:-)]

Norrm,
I don’t know anyone close who is living with dementia and therefore knew very little about the condition. However through your blog you are teaching me how dementia presents itself and how you feel, your awareness of people’s reaction and the affect on your loved ones. I think your blog is invaluable, not only to me, carers but also those in the medical profession who I hope are reading.

And no more should this disease be the Silent Enemy! Because I for one will not go quietly and will campaign long and hard until there are no more SECRETS AND LIES, JustTRUTH AND HONESTY !!

These words you said at the end of your posting, reminded me of the poem by Dylan Thomas….

Do not go gentle into that good night.
Rage, rage against the dying of the light.

Thank you for your blog and may your strength and courage continue

[norrms]

Thank you my friend, all i want to do is try to help, best wishes, Norrms and family xxxxxxxx

[norrms]

Hiya, I AM SO EXITED !!!!! I have just been informed that my latest book "Silent Voices, My Battle with Alzheimers Continues" is FINALLY availiable in the UK !! No more Shipping Charges from the States, so now all my friend`s in the UK and Europe can buy the paper back!!! Its been such a long time coming!!!! Thank you all for being so patient, I hope you all enjoy it, please let me know, and PLEASE pass on to ALL your friends and Internet connections, Buy it for your friends , its all in a good cause !! Just click on the lnk !! all our love, a very exited Norrms, Elaine and family xxxxxxxx
http://www.amazon.co.uk/Silent-Voice%60 ... 274&sr=1-2

[norrms]

Hiya, I AM SO EXITED !!!!! I have just been informed that my latest book "Silent Voices, My Battle with Alzheimers Continues" is FINALLY availiable in the UK !! No more Shipping Charges from the States, so now all my friend`s in the UK and Europe can buy the paper back!!! Its been such a long time coming!!!! Thank you all for being so patient, I hope you all enjoy it, please let me know, and PLEASE pass on to ALL your friends and Internet connections, Buy it for your friends , its all in a good cause !! Just click on the lnk !! all our love, a very exited Norrms, Elaine and family xxxxxxxx
http://www.amazon.co.uk/Silent-Voice%60 ... 274&sr=1-2

[norrms]

Hiya, I AM SO EXITED !!!!! I have just been informed that my latest book "Silent Voices, My Battle with Alzheimers Continues" is FINALLY availiable in the UK !! No more Shipping Charges from the States, so now all my friend`s in the UK and Europe can buy the paper back!!! Its been such a long time coming!!!! Thank you all for being so patient, I hope you all enjoy it, please let me know, and PLEASE pass on to ALL your friends and Internet connections, Buy it for your friends , its all in a good cause !! Just click on the lnk !! all our love, a very exited Norrms, Elaine and family xxxxxxxx
http://www.amazon.co.uk/Silent-Voice%60 ... 274&sr=1-2

[Emma Forrester]

congratulations, well done