Hubby was sorting out some memory sticks from a cupboard and handed me a pile of mine that I had forgotten I had and on one is some of my photographs that are missing! I had forgotten I had put some on there so am pleased to have them back. Yay!
Yesterday we had an online meeting for the Dementia Mentors project that I have become involved with www.dementiamentors.com . This is a site for people WITH Alzheimer’s and Dementia throughout the world, MADE BY people with dementia and Alzheimers. It is to support people who have been newly diagnosed and show them that we LIVE WELL with these things not suffer from them.
Only people with Dementia and Alzheimer’s knows what it is like to have them so rather than reading a leaflet this site is to reassure the recently diagnosed that we understand and can show that life is just as fulfilling and positive by offering an online meeting with a mentor who really understands.
I did not realise how little there is out in the wide world for younger people with Alzheimer’s and Dementia who still have high cognitive functioning. Most of the groups and support available is for older and more advanced stages.
The last time I saw my Consultant she introduced me to Aileen from the Alzheimer’s Association and we chatted about what support there was available for me which was appropriate, she said she would look into it and get in touch with me. Today I had a phone call from her to say that she was looking at a pilot scheme for Younger Early onset Dementia/Alzheimer’s people to start a Memory Cafe in the Derbyshire Area. Brilliant! I am looking forward to this first meeting to see what it should be like, what do we want out of it. I do love to get involved in something worthwhile, it gets me fired up with a purpose.
Today is always another day..
It struck after getting a new computer. The question was how to transfer photos and documents from my Asus to my new Macbook Pro – yes a luxury that I already love. I have most of my photos backed up on a Toshiba external drive and needed to format my drive to be FAT or whatever, so copied the files back to my Asus…………….but instead of adding them it didn’t. Did it overwrite the files? No and I have no idea quite what it has done. My original files are there, well most of them but my ‘story’ I have been writing (70,000 words so far) has gone, the only copy left is from October 2013 😦
I am mortified, both my writing and my photos have gone, so much for having kept them safe on an external drive. All my wedding photos but thank goodness Mr Hsg has got as many as I had. Apart from the pieces I have posted on here, with my memory problem I will never be able to rewrite what I have lost. I thought it was safe keeping it on an external drive but no, I should have printed them all out, you can never beat paper copies.
There is no point in being upset, I have to try and continue using what is left. I have a file with photos that I had include in my writing so can guess what I was writing about and start again. I will never remember anything I have written without them.
Onwards and upwards.
It hasn’t stopped raining. No chance to walk round the marina where I live, but Tuesdays is Hydro Active (therapy) days at the Derby Royal Hospital in lovely warm water. We set off checking our post as we left and I was pleased to receive my new pedometer. I did thirty minutes of specific exercises in the pool to work the muscles and joints that have been complaining and asked if I could get weighed whilst I was there as I had no idea what my weight was. Young Olly one of the physios showed me to a room where I could weigh myself and we discussed what was the best way to go about losing weight when you are unable to do much exercise, and have IBS with specific dietary restrictions. Lovely guy, and really positive too with helpful information.
Afterwards, hubby and I go into town to do a bit of window shopping or real shopping so with my pedometer primed and clipped to my clothes we set off. After an excrutiating afternoon of walking round, we headed off home with two new Apple Mac Pro’s, and I found I had done nearly 9000 steps – not bad I thought.
Today I have clipped my pedometer on and have just been sorting things out in the boat; at 6′ wide and with only roughly 40′ to walk in I am not holding out much hope of many steps today! Not to worry, I have weighed my food and added it to my fitness app on my phone. Yesterday I had 800 calories including wine, so how the heck I am 13stone amazes me! I don’t think I will be eating much more today, just the usual salad or veg with a bit of meat. I think I may need to try and balance out some foods a bit more.
Next week at Hydro, I shall be weighing myself, after my pool exercises obviously and will have hopefully lost some weight. I have a few ‘love it’ clothes that I hope to get back in to 🙂
I have been trying to lose weight which is hard when you don’t feel like you can walk far. So, I decided to be proactive with reducing my calories whilst increasing my exercise. Easy you say, not really because I have fibromyalgia as well as Alzheimer’s disease which both affect the ability to be active, but I decided that I could start slowly and build up. So, day one, I roughly calculated my calorie intake and walked around the marina at a brisk walk where I live. Day two, again keeping my calorie intake around 1000 kc, I walked further round the marina, coming back and falling asleep in the chair outside our boat on the pontoon! Feeling good about the exercise, and knowing that if I keep going I shall start to lose some weight and be fitter and healthier.
I was summoned to the Treatment Centre to check my eyes. I had the usual visual field, GDX and another test and all the results were good. Fabulous! That’s what I always want to hear. The consultant asked me questions and finally said, I have never heard of the symptoms you are describing, he mused. Do I look smaller one side to you; no I answered it is usually when I am reading that it occurs, although my perceptions of buildings and road are weird. I find it fascinating I laughed, and he agreed. This sounds like a problem with perception and your brain he concluded saying he would write to my Doctor for a referral back to my head consultant, although it would probably be just for notification only. What an interesting Alzheimer’s Journey this is turning out to be!