One Year On so let’s see how I am
On the 25th of November 2015 I was diagnosed with MND. I am so excited to still be here over a year later. I have bulbar onset MND which means the prognosis is pretty bad. But I won’t go into that as there is so much I can still do.
So what have I lost in a year? When I was diagnosed I could still talk but I stopped being able to say anything in June. However I just use my app to communicate. I have a lovely new Beta version to try at the moment and it is so much better. Much as I love Predictable but this version is far better. I am getting faster at using it too.
The only downside is that I have it on my phone and the iPad. The iPad version is fantastic. I often show people what I have written rather than playing it. In a crowd it is far easier as my app isn’t loud. Unfortunately I can’t always do that on the phone. Let me show you what happens. I have to play the message for people to get a brief glimpse of what I have to say. Then it returns to this.
A year ago I was eating normally. Now I need easy to eat mushed food. I can eat crackers but it is messier than my blitzed food. It turns out you can mush almost anything, you just need liquid to get to the right consistency. At some point I won’t be able to eat at all but I can for now so am very happy. Sadly mushed pork pies don’t work which is a blow as they were a favoured high calorie snack earlier in the year. My tongue is weakening so I am getting closer to ensure through the PEG. I already have some ensure each day.
I knew a year ago that my right thumb was weakening. So I am surprised I can still use both hands. My right hand does look a bit odd. Let me show you.
I am thrilled I can use my hands happily still. Well, I can grasp things and use cutlery which is exciting. I can still do a signature too but I wouldn’t want to write much in one stretch. Touch typing is still possible for my left hand but I use one finger on my right hand. It is easier like that. It is a shame I am right handed. I think you can see my fingers curl a bit. I can stretch my fingers out but I have to lean them on something to do it.
When I was diagnosed I could walk swiftly along. I am still steady on my feet but am far slower than I was. And stairs are tricky. I can climb stairs but my bannister on both sides helps a lot.
Dressing myself is still possible and I can have a shower, even wash my hair. I just use an eccentric method to dry myself as my right arm is quite weak. So I use a small towel for my arms as that is easier. Then I fling a big towel round my shoulders and cuddle it tight to make sure my shoulders and back are dry. Next I drop the towel so it is under my armpits and head for a chair in the bedroom. I think it works to dry myself as I sit on the towel to put moisturiser on and luckily I can still get off the chair. It is easy to forget but I dry round the PEG and put barrier cream round it too. I am not sure how long I will manage this method. But it is fantastic that it works for now.
Ooh, I missed out the fact that I squeeze out shower gel between my knees. Sometimes shampoo too. This is thanks to my lovely sister-in-law, Robin. She hurt her arm (a bit more than that) some time ago and I remember her saying about squeezing bottles between her knees. Yippee, something I can do too.
I am sad I can’t kiss anyone now. But they can kiss me and I can happily hug people. And I had a wonderful Christmas. I can’t eat much but who cares when I can tap away instead. I managed to see lots of lovely relations and friends too. It is really special when I can do that. I loved seeing family and friends so often and catching on news.
My really big problem is weight loss. For months I ate to my heart’s content and maintained my weight. Having a PEG fitted and then an infection was the start of the slippery slope. I have lost just over 2 stone since I was diagnosed. Potentially it isn’t great to be under 9 stone when you are 5ft 10″. I hope I am wearing enough clothes to hide it a bit. Conventional wisdom suggests it is best to maintain your weight with MND. Whoops. I am also told that it is best to be a bit overweight when you are diagnosed. Sadly my body mass index was about 22 when I was diagnosed. So not overweight at all.
I have a lovely new oxidiser now as oxygen levels can get iffy with MND. Now and then I check to make sure mine are fine. They always are so far. Two days ago I put my finger in keenly and this is what I saw.
It is an odd angle but you can see my pulse was fast. I wonder why it was 83. But my oxygen levels are really good. Yippee. Just like anyone else. We got it out on New Year’s Day when there were 8 of us for lunch. Every single person keenly held out a finger to have a go. It is so simple. And reassuring.
I know I am weaker than I was a year ago. But I love being able to do as much as I can. When I was diagnosed 13 months ago I had no idea how fast it would move. We anticipated a wheelchair and all sorts by now. At the very least we thought a walker. Yet for now I don’t need anything like that. I have to be careful not to trip as it is difficult to steady myself if I do and I can clatter to the floor if I fail to steady myself. It tends to be noisy if I do. And I tend to bash something.
I have a lovely time exercising now. In the past I rolled on the floor but is hard to get up if I do that. Now I roll on the bed. I can get off that. I also still use my shoulder pulley, exercise bike and little trampoline. It is thrilling that I can still do all of that. So we anticipated a more rapid deterioration than has happened. That has to be good. I don’t know how I will get on in the year ahead but with this disease you have to take one day at a time. And celebrate the stuff you can do now. That isn’t a bad mantra for anyone now I think about it. Celebrate every day and all the stuff you can do.
I also have hydrotherapy once a fortnight with a lovely physiotherapist who is called my maiden name. She married into the name and I don’t have the surname any more but I love the fact she is Susan Fraser. It makes me very happy. Actually I have another Susan as my new MND nurse. Quite fun.
Sometimes we all get scared. And sometimes we really should get scared. Other times we know we shouldn’t be scared but we just are.
I meant to publish this much sooner but the past month has whizzed past. It is traditional for me to link to a song. When we are school my friend Mary was teased about this a lot. My school swarmed with Susans. It was the most common girls name the year I was born. Harsh as I was named after my great great grandmother. I think my friend Mary was the only one in school.
You may not have heard this song before. Lying in the arms of Mary. The video is suitably psychedelic! It isn’t a great song but it reminds me of Mary every time I hear it. And she still is a great friend.
Smell the Roses
I know talking about roses is a touch trite but I have been thinking about them a lot. Roses seem to be everywhere at the moment and I just love seeing the colours. So let’s start with a picture of one of our own roses.
Obviously that is plain yellow but there are so many gorgeous colours around. It really is worth stopping to smell the roses. Admittedly it looks a bit weird if they are in other people’s gardens so those may be best avoided unless you know the people. I also know it is a well worn phrase to suggest slowing down and smelling the roses but I just love the idea of taking time to appreciate the beauty around. Not just roses but everything. There is a lot of loveliness to be found when you look for it.
I know I have been quiet for a month but that doesn’t mean I haven’t stopped to appreciate roses along the way. It does mean I have been rushing around and some of it has been due to more MND stuff creeping into my life. I spent one night in hospital to have my breathing checked. This was a very strange experience. Good bits included the fact I got a single room. Yippee. It meant I could decide when to go to bed.
The test involves a clip on your ear overnight. I was told you don’t notice. Not true! But I know I wiggle in my sleep a fair bit so that could be why. Well, that and a problem with the machine. It kept suddenly beeping tragically until I pressed the buzzer and someone came and recalibrated it. It finally accepted that it would work at 3am. Hurrah. Then I was woken at 6:30 for an arterial blood test from my wrist. This is not something I had ever experienced before. I always take normal blood tests in my stride but the nurse telling me it would be a slight prick was not accurate. Oww. Not that I said at the time. Well, I can’t speak anyway, but I could have used my app to moan.
I don’t really believe in moaning if I can help it. Hence my desire to think of beautiful things like roses. It really is far more fun than feeling sorry for yourself. OK, so I bounce around finding positives all over the place. Each professional I see asks me how I am feeling but I really am fine. I know I am dying but it doesn’t feel it yet. Oh yes, my overnight breathing test. The nurses were really lovely and coped admirably with my use of my app. When someone rolled up to collect the machine that had been recording my breathing and I told her it had beeped a lot overnight. She knowledgably said it could be when my oxygen levels dropped. I wrote that it was just a dodgy machine but I don’t think she believed me.
Not long after I was told my tests were all fine. Hurrah. The perfect result. No hint of low oxygen levels yet. No wonder I pranced off happily and admired all the roses I saw.
Next MND experience was to see a physio. That was fun. Well, I sulked a bit when I had to lie on a bed to be assessed but I did try to hide it. Apparently my elbows are fine! I already knew about my weak hand and shoulder so that was quite exciting. I am easily pleased. And I have some new toys to play with. I love the shoulder pulley to go over the door and I have an interesting squeezy thing for my hands too. I told you it was fun.
Yesterday I saw an Occupational therapist for the first time. All sorts of professionals are cropping up in my life. I really liked the Occupational Therapist. She looked round the house. Whoops. I should have cleaned before she came.
It is slightly daunting thinking about things I don’t need yet but will in time but I know it is worth doing. So, first things are going to be a second banister on the stairs so that there is one on each side, and a bar in the shower for when I need to hang on to it to get in. I don’t need either yet but I am told it takes a bit to get anything so it is worth getting in good time. Oooh, and I forgot about a ramp up to the front door for when I need a wheelchair in the future. I told you it was planning ahead time. And there is a lot more than that in the pipeline. Definitely time to make the most of all I can do and enjoy it while I can, roses to smell and everything.
Now, time for a deep breath. In a couple of weeks I will get a feeding tube into my stomach. This is a very clear sign something is wrong. I can’t speak but I actually look healthy. Well, I still will. The tube will be hidden most of the time. Not many people see my naked tummy! This is very good news for all the people who don’t. I expect to be slightly shocked by a tube edging out of my stomach, but it is worth doing before I lose the ability to swallow. I will lose the ability to swallow at some point so the tube will be ready for when I do. Let’s think about perkier stuff now.
I have seen lots of friends lately and several more are coming up in the next month. It is wonderful. They all know I can’t talk. Everyone just gets on with it and copes with my app. I have to get more adept with it. And remembering my glasses will help. I can walk without falling over so I have a lovely time getting out and about. Muscles are going to give up as time goes on so it is a case of seizing opportunities while I can. This is the perfect opportunity to introduce the song that inspired this blog. It probably isn’t what you expect.
The Roses of Success
How can you go wrong with a song from Chitty Chitty Bang Bang? The message in the song is great. Who cares if you make a mistake? Learn from it and keep trying. What a fantastic thought. Don’t give up when something goes wrong. Keep trying. I have to adapt a lot just now and it is great. I can do far more left handed than I ever imagined. So, my neurons are dying and muscles are stopping working but that is no reason to think the world is against me, or that life is unfair. It isn’t. Things like this just happen so please make the most of your life and have as much fun as you can. I know that is easy to say but no one knows what is round the corner.
I didn’t know MND was on the horizon but it definitely isn’t a reason to roll over and give up. Three weeks ago we got ourselves a cat. We headed off to the nearest SSPCA centre. OK, so we had nosed around there a couple of weeks before but this time our new kitchen was ready and we were all set to choose a cat.
All four of us headed off to look. We had keenly browsed the website in advance and were ready. We had just got out of our car when another family arrived. They wanted a cat too so we arrived at the cat enclosure at almost exactly the same time. Most of the cats were snoozing but one was really selling himself. He approached the glass, played, and did his best to look adorable.
The other family were smitten too. Tricky. My husband sneaked off and asked if we could have a closer look at the adorable cat. And reserved him. This was a wise move. Charlie still busily sold himself on release from his rather lovely living space. We loved him. So did the other family. But we had reserved him so he was ours. It was a shock to discover we could have him that day. We rushed off to buy cat related products. He is a really sweet cat. So you get to see a gratuitous photo of him on my lap.
Remember to appreciate beauty where you see it. I love roses so admire them at every opportunity. Remember that all sorts of things can crop up out of the blue too so take them in your stride and enjoy your life as much as you can. I intend to seize pleasure where I can. It is a lot better than screaming that life in unfair.
Let’s finish with a song to make you smile.
I’m a Believer
Can we always think positive?
I love having a new year stretching ahead of me. There always seems to be so much potential. I always imagine a multitude of loveliness lying ahead. I am not sure any new year is a positive experience from start to finish but all my years seem to have had far more that is good than bad. This year will certainly test that.
When I started this blog it was because I felt the middle aged were largely ignored. Beautiful young people regularly feature in the press as do much admired older people. David Attenborough anyone? I felt I was part of a neglected underclass. Alright, I didn’t really, but there is less than you would expect about the positive aspects of being middle aged.
Admittedly increasing wrinkles and greyness are slightly depressing but we also gain wisdom as we age. Well, most of us do. That is definitely a positive thing. I am also a lot more confident than when I was younger. I shudder to recall how much I wanted to vanish into the background when I was younger. It is true that ageing comes to us all but I bet you know plenty of perky and positive older people. I know I do. I would far rather age, hopefully, gracefully than go down the plastic surgery to hold back the years route. That is personal preference though. I don’t mind at all how others choose to deal with getting older. Free choice for things like that is perfect.
As it turns out, I am not going to get old anyway. I was diagnosed with bulbar onset motor neurone disease (MND) on the 25th of November. So, is this a cause for doom, gloom and depression? No, of course not. Someone has to get it and there are people diagnosed with it much younger than me. Do read about Gordon Aikman who was diagnosed at just 29. He really is inspirational. There are many places where you can read his story but this is just one.
Gordon Aikman’s Story
Then there is also this blog from Lee Millard. He is more my age but writes really well.
Lee Millard’s blog
There are always reasons to be positive.
Yes, of course there will be some grim times ahead but at the moment my speech is a bit slurred but still makes sense and I eat more slowly. Oh, I have a slightly weakened right thumb. But that is it. No one is going to look at me and think there is anything wrong.
I know that this will change but there is still so much to be grateful for. Please feel free to ignore the next paragraph if it makes you feel sick. It might. Sometimes positive things do and what I am about to write really might make you cringe.
I have been very lucky. I had a happy, albeit very shy, childhood. I had fun at University, jobs I enjoyed and I met my gorgeous husband when I was 22 and have two children I adore. My husband’s job means we have had to move regularly but I have made some fantastic friends along the way. My brothers and their families are wonderful too. My father was someone I loved and admired more than I can say and my mother is still alive and keeps telling me I am the sunshine of her life. I really have been lucky. I liked to think all the longevity in my family would mean me living a lot longer than I will but that in no way diminishes the luck I have already had. There is still so much to feel positive about.
Someone who saw me three weeks after diagnosis, and didn’t know what was wrong until a couple of days ago, told me she had thought it must be something minor as I seemed so ‘cheerful and happy’. I was out for coffee with her, Christmas was sorted and I was able to do anything I wanted. Life really was full of positive things even if I did know I had MND. Of course I was happy. I still am.
The lifetime risk of developing MND is around one in 400 so it isn’t like the risk of developing cancer. I have just looked at the Cancer Research UK website and it says that one in two people born after 1960 (so that includes me) will develop cancer during their lifetime. I know not everyone who gets cancer dies from it but that really is a high risk. Yet no one should be going around thinking they have a 50:50 risk of developing cancer. That way does lie doom and gloom.
Think of your life now instead. I bet you have a lot to be thankful for. I know I do. Do feel free to refer back to my nausea inducing paragraph if you are in any doubt about my thankfulness. There is so much to be positive about.
Not everyone can bounce around optimistically from day to day. Think how boring it would be if we were all like that. But I really do believe we can all find some positive things about our lives.
As for my initial question, can we always think postive? You won’t be surprised to hear that I really believe we can. Not every minute of every day, but definitely overall.