Dementia: Always explaining myself

I went to see a doctor the other day, because I have a long standing problem with my knees and they hurt.   I have not been able to use steps/stairs for a couple of years now.

Dr-Who-Daleks-Cartoons-Punch-Magazine-Birkett-1981

So, I explain that I have a congenital deformity in my knees and they are so bad now I can’t climb stairs etc…   Doctor asks me to explain what ‘congenital deformity’ I have.  “The knobs on the top of my tibia are too narrow for my patella to move over up and down without rubbing the bone, and my patella sits too high”  I answer then telling him that I had an operation on one knee in my 20’s giving the correct term –  “A Tibial Tubercle Transfer”.   He murmurs something about my patella, which I don’t quite catch so can’t answer him.

His next question is:  “Why do you have your medication in a nomad pack?” (see my previous post on this subject)  I suddenly feel like I am in a parallel universe in a different consultation.  What?

Me:  “I have Alzheimer’s”.    Dr: “You have it delivered weekly?”  Me: no I collect it monthly.  Dr:  4 packs at a time?  Me: Yes!?!?  Another Doctor from this surgery phoned the chemist and arranged that I could pick it up once a month.  I am not housebound I cannot change my life to collect it every week.

Then I find I am justifying myself by telling him that my Alzheimer’s is at the very early stages.  I say this twice.   I swear if I find he has stopped this arrangement to give me a  4 weeks of nomads packs of medication I will scream….. Arrrrrrggggghhhhhhhhhhhhhhh!   and breathe…

Knees, focus on my knees!

And yesterday I go for some X-rays on both my knees, some standing up, then they tell me to go over to the bed.     I don’t understand what they mean?  So they repeat ‘go over to the bed‘.    This is where my dementia kicks in, go over to the bed, then what?  Do they mean me to get on the bed, sit on the bed, lie on the bed?  I am tired of my brain not working properly at times.    It is frustrating not being able to understand the meaning of simple sentences at times.  It makes me feel stupid, which of course I know I’m not but other people don’t know that when I am not responding.   The X-ray technicians would not know I have Alzheimer’s which makes me even more embarrassed that I stood there like a dummy whilst trying to work out what to do.

Hey ho.    Onwards and upwards.  🙂

 

 

 

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.

~~~~~~~~~~~~~~~~~~~~~

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!

Exercise resumed..sort of!

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 🙂

Not a great start to my exercise regime!

So much for trying to get fitter with a daily walk around the marina.

Day 3:  today I feel exhausted and have no energy and realize that I cannot walk today.  Thought I would have some lunch and perhaps then walk a little way, rather than doing it all.  Made some lunch; a sandwich with Gluten Free bread, and promptly fell asleep, it is now 4:20pm and I have just woken up knowing that today I am unable to take that walk!   

Maybe I did too much on the first two days, maybe I have to remember that I have fibromyalgia and that my Alzheimer’s also affects and limits what I can physically do sometimes.  Damn them both!  I am waiting for my pedometer to turn up in the post so that I can measure how well I do on the days I can.

I will show them as tomorrow I have hydrotherapy at Derby Royal Hospital and will exercise them both into submission in a nice hot  pool.

 

There is no such thing as good days or bad days, it is just that some days I am able to do more than others.

Onwards and upwards 🙂 

 

Losing weight..keeping fit

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.

Image