Here is a link to the document recording Helen’s Funeral – Jim
The sad news is that Helen passed away on 14th August 2015, just under two years after we realised that she had a serious health problem. From the start of August Helen’s breathing became a fairly constant issue and she realised she had only a short time to live. From the 10th she needed increasing amounts of medication to prevent her breathing difficulties from being distressing and she was ready to die. She passed away peacefully at home. Despite these problems Helen a had lovely visit from her old friends Brenda and Tessa on 5th/6th and enjoyed her birthday on 8th with Laurie, Tammy, Anne and her old friend Brian who arrived that evening.
It’s a good time to pay tribute to all the amazing help, support and care we’ve received both from the medical and care teams and our wonderful friends and families – thank you all.
The memorial service will be at 11am on Saturday 29th August in the Main Chapel at:
30B Howdenhall Road
Helen requested no flowers please but any donations to MND Scotland and Marie Curie Edinburgh.
I know Helen really appreciated all the interest in her blog so thanks for that too.
Best wishes, Jim
The excitement of Jane and David’s nuptials continued into July and everyone left for the reception in Antwerp on July 4. With the help of friends the 24 hour care for me worked out fine, while Jim was away in Antwerp. I was Skyped just before the speeches so I could see and hear them, which was great. It was lovely to see all the friends and family who came to say hello to me on the iPad.
The thing about MND moving as fast as Mandy is that we get used to a piece of equipment and it quickly becomes redundant and we have to start learning how to use another. At the end of May I could stand up well using the stand aid, but by the end of June I couldn’t straighten my knees or hold on with my right hand for long. In early July the District Nurses demonstrated the hoist; it needs two people to handle it but it is much more comfortable. When they delivered the hoist they also delivered a sling for the Standaid with leg straps, which is more supportive, and Jim uses when he’s on his own.
Another problem is how to transfer me at the bottom of the stairs from Molly, the manual chair which the Scalamobile is attached to, into Polly, the power chair, as the Sam Hall turner is no longer safe. We have been manually lifting me with two people from one chair to the other. This means finding a second person to help. The awful weather hasn’t encouraged me to go out, so I have spent most of the month in my Riser-Recliner chair. Med Ecosse brought a wonderful out door chair for me to try, it tilts, reclines and the legs extend. These type of chairs are higher as the mechanisms are under the seat. It was much higher than Molly in the Scalamobile, so a manual transfer wasn’t on. A manual hoist was delivered for use outside at the end of July.We tried it out and hurray it works. It still needs two people to operate it.
I have started to collapse on my left side and my head falls to the left. This was my good side. The controls of Polly the power chair are on the left and operating them makes me collapse more. So that’s the end of going for a tootle. Charlie was here for three weeks and we went to Jupiter Artland, which is a sculpture park. I was collapsing so much that Jim and Charlie drove Polly for me.
My collapsing to the left also makes typing difficult as I use a finger of my left hand. We have found that a long thin bolster can prop me up quite well in my riser-recliner chair. The wheel chair services brought a new manual chair that reclines and is quite comfy. This means I can sit in the sun on the top step, hurray. That is if we have any sun. The collapsing of my trunk muscles is also affecting my breathing which is becoming quite shallow and causing me to panic, which makes it worse.
Charlie and I were watching our first home movie, when he was 2 months old, and I felt like a baby. I can’t walk or talk, I can’t hold my head up, I am on liquid food, I need my face wiping after a meal and I dribble, -Wah, wah, wah.
I had my last bath in June as I can no longer use the turner when I am so relaxed after a bath. Boo hoo as I love to have a bath.
From 20th July we requested two carers for an hour and a half in morning and an hour in the evening from 9pm to 10pm. This is so we can use the hoist and to give Jim a break .
I have been going through boxes of old letters. I kept old letters because I was hopeless at throwing anything out and I had an idea I would want to look at them again. I am so glad I did for they have been a joy to read. Letter writing is a lost art, but it how we used to keep in touch with our friends.
The highlight of June was the wedding of Jane and David on the 30th. In early June I went shopping with Anne to buy a dress. She tried them on and I had to imagine myself in them, the length was the main difference as she is five inches taller than me. I got the dress to go with my wedding jacket, which I haven’t worn since 2011. The festivities started the evening before, when we invited David’s Belgian family over for drinks and nibbles. On the 30th the wedding ceremony was at 3.30pm. at the Registry office, where Jim and I were married four years ago. My carer got me up, did my hair and put my make up. It was a lovely ceremony for a few people, the main party being in Antwerp on the forth of July. Jane and David are so happy together. People came back here and it was so warm we had drinks and canapés in the garden. They all went out to dinner and Fiona and Richie stayed behind with me.
I was feeling sick for the first twelve days of June and put it down to the medication. This was altered and I am feeling a lot better. My neck muscles continue to give up and I have had to stop going to yoga, boo hoo. I can only just hold my head up for a very short time. A reclined position is most comfortable and I tend to stay in the Riser-Recliner chair most of the day. The replacement back for Apollo, the indoor power chair was so uncomfortable that I have hardly spent any time in it. This means we have stopped playing Bridge with our friends and now my fingers are too weak to sort the cards. A replacement chair for indoors arrived in late June. It’s an Invacare Dragon which is actually an outdoor chair. It tilts and reclines and is very comfy, but it is massive and quite difficult to manoeuvre through doorways and tight spaces.
The weather wasn’t great for a good part of the month, but I was able to get out into the garden for a short time in Polly on the good days. Last Summer I lazed about on a lounger reading in the sun and getting my legs brown. Ho hum. I can also sit on the top outside step in Molly, which is attached to the Scalamobile, but only for about half an hour before my neck hurts too much. Polly is no longer that comfy and we are waiting for a replacement chair. This means cancelling our current contract with the Mobility Scheme and starting a new one. As this is a National Government Agency it will take ages.
In early June we started to use the Stand Aid all the time. This makes transfers much longer, but they are safer and more comfortable. By the end of June I was finding it difficult to hold on with my right hand. We told the District Nurses and a hoist was delivered almost immediately, but with no training and the carers won’t use it unless there are two trained people! Jim is going to the wedding reception in Antwerp on Friday and will be there for three days. We have 24 hour care organised with the agency with new carers so I am very worried. Watch this space!
In late June I had a shock at Marie Curie. I was playing Scrabble and I found I could only pick up the tiles with great difficulty, as my left hand fingers are too week and I can’t move the fingers of my right hand. So Mandy marches on!
In early May I started to have carers to put me to bed. They come at 9pm for an hour, which really is very early, but at least it means that I can have a good read in bed. My neck muscles are on the way out and the neck pain has been really bad. The tens machine does provide some relief and I am most comfy in my arm chair. Wheelchair services fitted head support for Apollo and Molly for the Scalamobile, but neither are comfortable. I can’t go to yoga or play Bridge until this is sorted out. My speech is now unintelligible and I have been crying a lot with frustration at not being understood.
I spent the last week of May in respite at Leuchie House, while Jim went north to recharge the old batteries. The staff there were wonderful; caring, kind and patient. I had massage and Reiki which did my poor neck a power of good. In the evening there were films, quizzes and entertainers. There were still some problems with communication and I got a bit fed up with my limited diet. A big thank you to my friends who visited me there, and to the staff who looked after me.
I was working through the problems with eating and drinking.
There were four problems, then I thought of another and changed it to five, then another one and kept changing it until I arrived at nine. I was reminded of the Monty Python sketch No body expects the Spanish Inquisition! Our two chief weapons are… no, our three chief weapons are…..no, our four chief weapons are ……
So here they are, there are nine problems with eating and drinking. One, choking. Two, my lips are so weak it falls out of my mouth. Three, my tongue is so weak that I can’t move food around. Four, my jaws are so weak that chewing is difficult. Five, when I do chew I catch my lower inner lip between my teeth. Six, my lips are so weak that I cannot suck through a straw. Seven, I am losing the swallowing reflex. Eight, I cannot drink alcohol as it reacts with the slow release morphine and makes me unpleasantly woozy. Finally nine, I make a terrible mess. However, my sense of smell is unaffected, which can be frustrating if I can’t eat what is being cooked.
We take so much for granted. So next time you tucking into a tasty meal, be mindful of all the processes that are going on when you eat and drink and enjoy!
My 29th trip to Colonsay! Laurie and Tammy came up to Edinburgh after work on Thursday April 3. On Friday we packed the cars and were able to give Fiona and Richie a stack of equipment and luggage to take for us as Laurie and Tammy were travelling with us. At Oban I went onto the ferry as a foot passenger, which was easier than going up from the car deck. It was going well; we drank Colonsay beer and tucked into a Cal Mac meal – yummy! I was settling down to a quick 40 winks when an announcement came over the loud speaker that we were turning back to Oban because of the bad weather. Boo hoo. Cal Mac offered no compensation as we had to turn back due to weather and not a technical problem. We decided to go to our cottage near Kenmore for the night even though it was a two hour drive away. We didn’t have a manual wheelchair with us, so after getting me up the garden in a wheelbarrow, Jim and Richie carried me to the ground floor bedroom on the commode. It’s a good job I don’t get embarrassed! I was quite achy after 14 hours sitting in Polly.
The next ferry was not until 16.30 so we had a relaxed time on Saturday. This crossing was calm and we arrived to find the island shrouded in a mist which hung about for most of the next day. By Monday better weather set in and it was quite warm in the sun. I could at least look at the magnificent Kiloran Bay from the car park. From our cottage I could tootle over the golf course to beautiful Machrin’s Bay.
A highlight was taking Polly along the old track from Colonsay House to the tarmac road at the hair pin bends. It was relatively easy although getting Polly over the cattle grid was quite an effort for Jim and Richie. The track had been upgraded by the Estate and was a great improvement. Fiona and Laurie took lots of photos of the places I love but can no longer get to. We had lots of fun, played games and ate well. My PEG site was sore so I had to lie down on the sofa most afternoons. It was great to spend time with Laurie and Tammy, who were very helpful and supportive. They left on the 07.50 ferry on Tuesday morning and took all day travelling back to London. In the afternoon we had a text from Cal-Mac saying that our Wednesday morning ferry was cancelled and eventually told us they would put another one on at 20.20.
That cheered us up as we didn’t have to pack up on Tuesday night. We also gained a day and the sun shone for us, which partially made up for the loss of a day at the beginning. This time Cal Mac gave us a catering voucher as the delay was due to a technical problem. The downside was that we didn’t get home until 1.30am where Fiona and Richie helped us to unpack and we got to bed about an hour later – bliss!
I have put the progress reports for 2015 as a new post to save scrolling down the monthly blog from 2013. Each month I will add to this post.
This has been an awful month. I failed the clothes peg test on all fingers on my left hand. My fingers are still flexible but are getting weaker. When I play Bridge, Jim now puts out the dummy for me and I am very slow to sort my cards. The other players have to shuffle and deal for me. My legs are now so weak that I don’t use the walker any more to walk from the bed to the loo in the morning or across the back landing to get from one stair lift to the other. My speech is getting so bad that people find it difficult to understand me. It is worse at night and I really can’t talk while eating. I have the iPad but it is slow and hard work to carry out a conversation. My bottom lip is so weak that I often spray food and drink everywhere and have to wear a bib. My weak lip means I can’t kiss anymore. My jaws are getting weaker and I frequently can’t finish a meal because I can’t chew any more. I was dribbling a great deal however the Dr. prescribed Atropine drops which work a treat at slowing down the production of saliva. I am also finding it difficult to turn over in bed. I wake up and panic because my legs are stuck. We have had many visitors this month and I have been meditating so I haven’t been too downhearted with this decline.
General Weakness Most of the time I can’t lift myself up from my wheelchair to transfer to the loo, or the bed or the recliner chair. The Sam Hall Turners which were ordered by the OT at Marie-Curie arrived and I use this with the carers in the morning. I pull myself to standing and the whole thing is swivelled around and I sit down. Easy peasy. This saves me having to foot shuffle and lift my feet. My hands are now so weak that I cannot pull up my trousers after going to the loo, so Jim helps. When I am going out Jim uses the flat disc turner for the transfers onto the stair lifts and into Annie to go across the back landing.
These transfers are becoming very tiring for both of us. At the end of February we started to use the Scalamobile to go down the front steps. Even this is two transfers. If we use a turner all the time maybe I won’t have to wear a splint. That means I can wear straight trousers again! My left foot is dropping now and I was supplied with a brace and noticed that it increased the turn in of my foot and was very sore. They then gave me a nylon bootie which decreases the foot drop but is quite a hassle to put on.
Eating My sucking ability is getting weaker, so using a straw is getting more difficult. However I can still lift a light glass and mug with my left hand. My tongue is now so weak that I cannot move lumps of food around my moth to chew them. This limits what I can eat. Choking doesn’t seem to have got any worse, which is a good thing. I can drink beer without choking – hurray!
Carers By mid February we were up to six days a week with Samantha as my main carer. Pamela comes to give me a bath on Saturday afternoon. It needs two people to get me out of the bath with the manga-cushion as I tend to slide off it as it is being pumped up.
PEG Tube There has been a real problem with PEG hurting and granulation around the hole, which is the body trying to heal itself. The District Nurse came to take a SWAB, which came back negative. She put a dressing on which successfully removed the granulation. The PEG starts to hurt in the afternoon. My ribs are pressing down on the tube and the retaining button inside the stomach so the pain is internal and coming from the wall of the stomach which is being compressed. This is due to the position of the tube and there doesn’t seem to be any thing they can do. The pain eases when I lie down.
Speech I am using the Predictable App. on the iPad more as Jim is finding it increasingly difficult to understand my speech. I am so distressed by this as it is very difficult to have a conversation. Also the amplification on the iPad is not enough to be heard at Marie Curie, with background music and all the chatter. Keycom are looking into this.
Sleeping As my movement decreases this is a problem. My aim is to sleep on my back. We tried a rolled up towel under my knees, a pillow at my feet to stop foot drop, a duvet under my heels which were getting sore and a narrow bolster under my right shoulder to give some support. Then if I turn once during the night onto my left side, Jim puts a pillow between my knees and one under my right arm to support the shoulder. We are still working on it. We are really putting off getting a hospital bed, as this will be a huge upheaval.
Weakness I can’t pull myself up from my wheelchair at all now and need help every time I need to transfer. It’s better when sitting on the bed as the carer sits beside me, puts her arm around me and on a 1,2,3 we stand together. It is more of an issue from the wheelchair or loo. My knees hyper-extend some mornings using the turner. Sometimes I feel that I can’t stand up for vey long, both in my legs and arms holding on. I don’t weigh very much, but as my muscles waste, this becomes a dead weight, Jim says like lifting a CWT sack of concrete. The OT is coming soon to do an assessment for the next piece of equipment for making transfers easier.
Eating My eating is becoming more difficult and many meals have to be purified, however they still taste good. I can still easily eat porridge, yogurt, cheese with cut up apple and cherry tomatoes, melt in the mouth crackers and potato scones. I can drink soup and smoothies, yum yum. I have been given a supply of Fortisip complete drinks which are 300 calories of sweet synthetic-ness.
Speech My speech continues to get worse, I really don’t like the sound that what is left of my voice now makes –its very gravelly. I can do a good impression of a Darlek –exterminate, exterminate!
At Leuchie House, where I went for four nights respite, couldn’t make myself understood. My iPad wasn’t loud enough to be heard above the volume of chatter. I felt excluded from conversations. The carers spoke to me, but only a few guests spoke to me as I couldn’t respond very audibly. Only one member of staff sat down with me and had a look through the categories and photos on my iPad. I did not feel that my Helen-ness was conveyed. However with reference to my last post, I am not as bothered by this as I would have been. I am going to get another badge made saying ‘I cannot speak, but I understand’.
On March 30, Phillipa from KeyComm came to demonstrate Eye Gaze. I am trying to be one step ahead. I tried it out and it is activated by staring at the menu, the keyboard, and items on the screen. It will be very slow to write a word by staring at each letter and I must stay calm when it comes to it. I do feel much happier having seen it and was able to ask questions. Phillipa also offered a partial solution to the amplification problem. A Bluetooth speaker will work with my synthetic voice, but not with the pre-recorded phases that I put on last year. Model talker, who make Predictable, say that it is a bug which they are trying to fix.
Jane and David’s Wedding I became very upset when it was made clear that I cannot go to Jane and David’s wedding reception in Antwerp in July. It will be too difficult and I want Jim to have an enjoyable, relaxing time. It more that I do not to have it to look forward to. However I do have the actual wedding ceremony which will be in Edinburgh at the end of June, so I am delighted to have that to look forward to. On March 28 Jane came over for her non-hen weekend with her mates. She is staying on for the rest of the week and is involving me in lots of decision making for the wedding, which I really appreciate. One idea was to set up Skype at the reception so I can almost be there.
All this a bit miserable so here is a link to a short video snap of me as I would like to be remembered. It was taken in Lanzarote in November 2013.
A great deal has happened this month. After sampling a hospital bed at Leuchie, we ordered a bed from the District Nurses. It’s great; it raises knees and the upper body and goes up and down. It has an air mattress which sends ripples every ten minutes or so. I can happily spend the night on my back with my knees raised and top body slightly elevated to assist respiration. I now don’t have to wake Jim up to turn me. There no such things in the 1960s and my poor mother got up at 3am every morning to turn my Dad so he didn’t get pressure sores. We have rearranged the beds and Jim sleeps on a single bed along side.
My neck muscles are going and I have neck pain most of the time. The best position is lounging back in my recliner chair. This is also the best position to avoid PEG pain. I have a micro bead neck pillow which is helpful. On Colonsay the PEG pain was so great that I had to lie down in the afternoon, so it reduced how much I could do there.
I am on slow release Morphine and I can’t have a drink without feeling dizzy and woozy. This is no fun!
I know crying is a symptom of MND, but I keep crying with frustration of being unable to express myself or make myself understood. This is also frustrating for Jim as he frequently can’t tell what I am crying about.
But hey! I’ve been to the Turkish Baths twice and Brenda came to stay which really cheered me up. We had a great time on Colonsay at the beginning of the month. At the end of the April we went to Loch Melford with three other couples, who were so helpful and supportive. They produced some wonderful meals that I could eat and that gave Jim a break from cooking. We had a lovely time at Arduaine National Trust Gardens, which were blooming with Magnolias, Rhododendrons and Camelias. I have been going through boxes of letters sent to my Mum to rationalise and get into order. Many of them are from me, there is so much that I have forgotten.
The staff at Marie Curie, where I go on Friday continue to provide a tower of strength. As well as advice on medication and equipment, I have massage and acupuncture. The group is very friendly and we usually play Scrabble. Dominoes or Logo.
Thank you to everyone who sponsored Naomi to shave her head, she raised over £2,000 for MND. And a big thank you to my friends and family for all your care and support.
I went to Leuchie House on March 23 for four nights respite care while Jim helped Anne to settle into her new flat in Bristol. Leuchie is a beautiful Georgian house in East Lothian near North Berwick. It is set up for respite care for people with neurological problems. Both the public rooms and the bedrooms are large and spacious. There were 12 other people staying, but no one suffering from MND. The care is of a very high standard provided by nurses, carers, physiotherapists and catering staff. They call it a holiday rather than respite. The staff were extremely cheerful, caring and patient. They have an Activities Co-ordinator who arranged trips out, complementary therapies, the hairdresser and in-house activities.
I had Reflexology and Reiki which I really enjoyed. In the gym I tried out an automatic cycle machine for 15 minutes. This was no effort, and my legs went round and round which was great for my knees and it improved my circulation. I also had a hair cut; my hair has not been this short for years.
A highlight was a trip to the Royal Yacht Britannia at Ocean Terminal. I had not been there before and was really impressed with the disabled access and the high quality of the furniture and fittings. At Leuchie there were also in-house activities including quizzes, a Race Night, films and a musical entertainment.
I slept on a hospital bed with an air mattress, which was very comfy. I can change my position by raising my knees and feet and the head end. The air causes the mattress to ripple at intervals and feels great. We are now going ahead to order one as this will be more comfortable and it will save Jim having to get up and turn me in the night.
One big drawback was my inability to communicate. Most of the guests there could speak well. The carers could often not understand me, especially in the evening. I tried to use Predictable, my speech app. at meal times, but the volume was not load enough to be heard above the chatter. I was frustrated by my inability to join in with most conversations. It was a relief when Miranda visited me on Thursday; a visit which we fitted in between lunch and physiotherapy in my busy day.
Apart from the communication issue I really enjoyed my break there.
In December I had an epiphany. I read the chapter about meditation on Emptiness in Buddhist Kathleen McDonald’s book ‘How to Meditate.’ She talks about the sense of ‘I’ and relative and ultimate reality. The ‘I’ is dependant on causes, conditions and a stream of experiences that confirm the personal sense of self.
The meditation practise includes running through the body trying to find the ‘I’,
Try and locate the ‘I’, is it in your foot? clearly not for if your foot were removed would you lose your sense of ‘I’? Maybe the mind is the ‘I’? The mind is a constantly changing stream of thoughts, feelings and other experiences coming and going in rapid succession. Which of these is the ‘I’? a happy thought… an angry thought…. a loving thought or a depressed feeling? If your ‘I’ is love, what happens when the mind is filled with anger, does the loving ‘I’ go somewhere else?
Or maybe you have many ‘I’s; a happy and outgoing ‘I’, a loving ‘I’, a negative and grumpy ‘I’, a peaceful and contemplative ‘I’?
Mentally disintegrate your body into millions of atoms separating and floating apart. Now disintegrate your mind, let every thought and memory float away and check the feeling of ‘I’, where is it? What is it?
I have found doing my blog very cathartic and realise that it is very ‘I’. Now I feel that I am putting my ‘I’-ness into my blog – it has my past and present in it. I feel that it is a tangible expression of my ’I’-ness and that somehow I am emptying my head of the stream of chattering thoughts and putting them outside me. It’s like taking off an overcoat. When I then meditate it is easier to access a realm of calmness, peace and tranquillity, with a sense of formlessness and an awareness of pure Being.
The ‘I’ of Helen becomes less as my capabilities diminish. For example as my power of speech declines so does my ability to verbally express myself. This is particularly the case when I am in a social situation. I used to chat and be able to articulate my views. I used to have loads of energy and enthusiasm. I used to value being independent. I worked in Local Government and had a deep seated sense of public service. Now I am on the receiving end.
However I am on a path to learn new skills through meditation and to find peace, stillness and understanding. I have no control over my body and Mandy’s relentless progress, but I aspire to have control over my inner state. One really positive aspect of my situation is that I have the time to meditate and to read and listen to books about Being, Nothingness and Emptiness. I cannot rush around being busy any longer. Also I prefer to appreciate living in the present than thinking about the future, which is not looking good.
A wonderful book on this is ‘Practising the Power of Now’ by Eckhart Tolle, which I downloaded in book and audio formats. He writing is so clear, concise and powerful. The extracts below are paraphrased.
Being is not only beyond, but also deep within every form as its innermost invisible and indestructible essence. This means that it is accessible to you now as your own deepest self, your true nature. Don’t seek to grasp it and don’t try to understand it. You can only know it when the mind is still, when you are present and fully and intensely in the now. To regain awareness of Being and to abide in that state of “feeling realisation” is Enlightenment. It is a natural state of felt oneness with Being. It is a state of connectedness with something immeasurable, something that is you and yet is greater than you. It is finding your true nature beyond name and form. You begin to awake. A sense of stillness and peace will arise along with the joy of being.
My challenge is to bring this sense of peace and calmness to temper the frustration I feel as I lose my capabilities.
Tolle goes on to talk about relationships and offers solutions for dealing with irritation and negative feelings. The final chapter is about transforming illness into Enlightenment and Suffering into peace.
Transmute fear and pain into an inner peace and serenity that come from a very deep place. Do not make the illness your sense of self. If you cannot accept what is outside, then accept what is inside. Your resistance is creating the suffering. Surrender to grief, fear and pain -witness it, do not label it. Then we see how the miracle of surrender transmutes suffering into deep peace. Feeling sorry for yourself and telling others your story will keep you stuck in suffering. Bring light into the darkness with the flames of your consciousness. The worst thing in your life turns into the best thing, forcing you to become nothing. Shine light on the darkness. Wake up. Suffering will force you out of your unconscious state. The realm of Being, which has been obscured then opens up. Suddenly a great stillness arises within you, an unfathomable sense of peace. And within that peace, there is great joy. And within that joy there is love. And at the innermost core, there is the immeasurable, that which cannot be named.
There is hope – one does not need to be able to speak or move to attain Enlightenment.