Well now, what’s new?

Gosh it feels like ages since I have written and posted anything.  I am quite busy these days and need to get some time to sit and read, and also write.

Early December I lost my Dad.Scan 9

At 94 his heart simply stopped.  He was at home and had lost the reason to live after my Mum died last June 2015.   It was a sad time for all our family arranging a funeral for the second time in six months.   Now we have the hard task of working together to clear the family home, I don’t need to say how difficult that is.  We all miss him so much.

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So what else is new….well the biggest thing is that I recently tried to join a research trial for a new drug for dementia that has had some remarkable effects.  So I was keen to get on to the third phase.  Along I went and carried out the initial memory tests to see if I was eligible and was not really surprised to find out that my memory was too good for the trial!  Over time I have been feeling that my cognitive abilities have indeed improved and I discussed it with the researcher.  I have now been taking Rivastigmine medication (Exelon) for the last 2 (or is it 3 years?) and it has certainly improved things for me.  I have also worked hard in trying to keep my mental abilities active, by reading, writing, playing scrabble, sudoko and the like.   I think it is great news.   There are times when I know people have questioned their diagnosis (or others questioned the diagnoses of someone) when they do not appear to have any great cognitive difficulties or have improved.  It is very unsettling when someone has a diagnosis of dementia then told they do not have dementia because the symptoms have improved some what.  People want a reason for their cognitive difficulties.    For me, I would love to have a different diagnosis, ‘So sorry we made a mistake you don’t really have Alzheimer’s those empty holes in the blood flow in your brain scan was just a smudge on the camera lens’  and I still wonder if brain trauma looks the same as Alzheimer’s in a scan, but then know it is likely it leads to the same thing.  I even thought of trying to get a different diagnosis, perhaps downgrade it to MCI (Mild Cognitive Impairment) which I already have, but the reason for it was diagnosed as Alzheimer’s.  It all seems so complicated and simple at the same time.  What does it matter anyway – well I will tell you how it affects you.  I have to first remind you that I do NOT have Dementia, yeah yeah I know that Dementia is a symptom, but it is also a disease, and Alzheimer’s is classed under that.  You still with me so far?   Ok so having been told before by one GP that you cannot have Alzheimer’s without dementia due to it being a dementia, I have Alzheimer’s disease without dementia.  That fact still remains true at present unless anyone else can interpret my scans differently.    Holiday insurance: did you know that you cannot get a yearly insurance if you have a diagnosis of Alzheimer’s?  No matter that I may have only mild cognitive impairments, it is the word Alzheimer’s that is the crux.  I guess if I said my diagnosis is MCI then I would be able to get it.  I can get individual insurance for each holiday so I am told but at a greater cost.   (I have just booked a trip to Alaska with my daughter in August which we have been saving for! )  Driving licence:  I would have to apply for each every year with my doctors confirmation that I am able to drive.  I have however had to surrender it because my attention  is too poor.   Yet someone with ADHD, are they able to hold a driving licence I wonder?  Suffice to say the word Alzheimer’s in itself is a barrier to a lot of things regardless of the level of it.

It’s great though that my cognitive abilities have improved and I hope it will remain so for many years to come…….

I am involved in my local YPWD (Young Persons With Dementia) group and join in activities locally.  We had an arts and crafts course before Christmas which was fun, and since then it has been furniture up-cycling – something very close to my heart as I have furnished my flat with old furniture and am up-cycling it bit by bit.  I am really enjoying doing it and discovering what my style is!

On Monday I shall be speaking at the Berkshire Dementia Action Alliance Meeting.  When I was asked I felt a bit of a fraud but then I am more than capable to talk about how it was when I was diagnosed and what I have been doing since to keep my brain active – use or lose it as the saying goes, and how to make sure that I remember everything on a daily basis.  I can talk about how I still fear the future – when I allow myself to.   Also speaking with me is a guy  who is another member of the Newbury Empowerment Group so we know each other.   So I am trying to put together some notes for that.  Will let you know how it goes.

Next, I have been asked to be part of local nurse training giving information about early diagnosis and my experiences.  I can not only pass on what I know, I can also give them lots of information that they will not have even thought about!   I am so pleased to have been asked and can be a voice.  Not sure whether that will be by video or a talk.  Looking forward to being involved with that.

I have had some very small involvement in the West Berkshire Neurological Alliance, which is an excellent forum.  I regularly attend the Berkshire West Therapy Centre using their exercise machines to keep fit in a way that helps my Fibromyalgia.  It is such a unique place with only one other coming close to it in the country, I help out with raffles, and will help when they move premises on 1st April.

This year is already turning out to have the promise of lots to keep me occupied!

Dementia: Headaches and stuff

19 August 2015
Went to the Doctors yesterday because I am so tired of headaches,     brainday in day out, the pain in my head just won’t go away.   Sounds like cluster headaches but I have no break in them, so possibly migraine the doctor reckons.  She suggested that I try some Amytriptaline at a very small dose at night. However, Boots the Chemist say their suppliers don’t do a lactose free version!  So, I have a conversation about whether they can get any from elsewhere and here is the rub: they use two suppliers who in turn have a range of manufacturers they use, and they don’t make them lactose free…. So I say “can you not find a manufacturer who makes them?” I add “ I can go on the internet and find out who manufactures some and give you the information”. But, what the guy is saying is that if their suppliers do not buy from these manufacturers then, no, they will not get them.

Thanks BOOTS, what a ridiculous situation to put me in!

Maybe I will have to go back to my Doctor and ask her to supply me with a separate prescription so that I can trawl the chemists in the towns trying to find a different one who uses alternative suppliers to BOOTS, in order to find a lactose free version whilst coping with a head that is being ‘drilled’ constantly.

I also talked to her about my mood being up-and-down at present, becoming annoyingly teary throughout the day. It seems the past 6 months has finally caught up with me. My marriage breaking down and leaving my husband, moving home to a new area not knowing anyone and my mother dying, along with the trauma my sister is constantly putting us all through with her constant bizarre and unforgivable behaviour with my Dad.

After a visit from a lovely lady (Alzheimers Support) giving me all sorts of information of what was available for Young people With Dementia, I joined a group for a ’stroll and supper’ at a nearby park. Not knowing the area at all, I planned my bus journey on the net, which stop to get off with a walk across the park to the meeting place. Yes, I felt anxious as I left and found I had forgotten my mobile phone, but ‘not sweating the small stuff’ decided it was not important enough to get it and risk missing the bus.  It was a good night and met some lovely people, but I was excruciatingly aware that I was the only single person there, and this upset me greatly. So, I am going to ask whether it is at all possible to find out if there are other people with dementia who want to meet up as a group singly.

So, all in all struggling a bit at the moment.