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.
January 2015
I have these tartan bibs in blue, green and red
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.
February 2015
The Sam Hall Turner
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.
ooh its so good to be standing up
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.
Predictable app. on the iPad
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.
March 2015
We now use the Scalamobile to get down the front steps every time I go out
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.
Exterminate, Exterminate
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 in Houston March 2014
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.
April 2015
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.
Riser – Recliner chair, one of our best buys
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.
The view from the cottage at Loch Melford
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.