Susie's 50th birthday is approaching!

Susie, my wife, has always wanted a personalised registration number, what the Americans call a licence plate. I've given in! We bought it now even although her birthday isn't for another four months. She's delighted with it and will transfer the number onto her car sometime soon. Here it is:

Injections - arrgghh!

The Rebismart Device

I saw the MS consultant in March for my annual review. That appointment coincided with the numbness that had developed in my legs. The consultant ordered an MRI scan (see a previous post for the images) and a review appointment in June this year. By the time I saw the consultant in June, I had also developed numbness in my right hand. The consultant said that he would have to reconsider the diagnosis of PPMS (primary progressive multiple sclerosis) as I was obviously experiencing some classic 'relapses' - more like RRMS (relapsing remitting multiple sclerosis). As I had had two relapses in quite a short time, he recommended that I begin self-injecting with Rebif - one of the interferon - beta drugs, which acts by reducing the immune response and cuts down the progression of MS by about 20%. The injection is three times weekly and administered with a trendy little gadget called the Rebismart. It's very easy to use and obviously has a little on-board computer which guides me through the whole procedure. Yes, there's a short needle involved, but, it's never seen and hardly hurts at all. Having given thousands of injections over many years to dental patients I consider this my just desserts. Payback time!
 It does have some side effects - I can feel pretty ill and washed out for a day or two after injecting, I've had itchiness of my hands, pain in my feet and there's a risk of serious liver damage! Therefore, regular blood tests are necessary. I've just reached the highest maintenance dose and I'll report back soon as to how I'm getting on.

Apologies for the late MS update.

I really need to apologise. It's been too long since I last posted anything, and truth be told, there has been too much going on and I wasn't quite sure how much to commit to the very public internet!

I posted quite a lot about the problem I had with my legs and the lower half of my body in general. That is a lot better, but some of the numbness and other physical effects remain. Just when I was getting back to work in May I developed tingling in my right hand. This got worse until I had a partial numbness and stiffness which has been with me now for about four months. This has stopped me working in dental clinics and teaching the students at Glasgow Dental School as I can't hold the dental handpiece (drill) safely as I might drop it. I have been attending work and doing a desk job for the last few months. My employers are very aware of the situation and I know that unless there is dramatic improvement soon then my future in dentistry is in serious doubt. This is very sad for me, as I've always loved my job and considered it a privilege to work with patients and then latterly young people entering the profession currently in their undergraduate years. I've been somewhat reticent about posting information about my hand problems as I'm aware of the serious implications for me if this continues. I'll post quite soon with an update on this.

MS update June 2010

Update:

Well, it's been an interesting month and I'm not talking about the world cup! I posted before that I had developed numbness from the waist down; well, that's resolved to a great extent, or to an extent that I don't notice it too much. If I touch my legs and feet there is still 'altered sensation' but, I think my brain has just got used to it and I can drive and have been back at work. When I had just developed the aforementioned numbness I happened to have my annual review with the specialist MS consultant, which was good. I explained the situation to him and he didn't say that he would have to review the diagnosis of primary progressive MS (PPMS), but explained that, these diseases don't necessarily fit into the man-made categories that academics like! So, he ordered an MRI scan to see if there had been any significant change in the brain scan. I'll have to read up on this as I imagined that more would be seen on a scan of the spinal cord, but, the outcome is the same in any case.

So, I went for the MRI scan and it really is no bother at all. You just lie very still in this long metal tube that buzzes and makes clicking noises. This time a contrast medium was used to highlight different parts of the brain. When I went for the review appointment just a week or so ago, I asked the consultant if I could have a few of the images for my own photo album - so here they are! (remember to click for the full-size image)

The front of my head is to the top of the picture.

This is the same view of my head but with a contrast medium injected just before the scan was taken. All the blood vessels and 'sinuses' are highlighted.

This is a view from the side of my head a 'sagittal' view. If you look to the front of my head (that's on the left of the picture) you'll notice that my nose is missing. It's OK, though, they added it in at the back (look where the red arrow is pointing!), at least they got it in!

More complications!

So, where was I? Oh, yes. The numbness in my lower half began to recede. It's not away, but, I can live with it. I wanted to get back to work (this would be at the beginning of May), so, I saw my GP and arranged that. The day after I saw my doctor, I began to get tingling in my right hand! Oh no! It has got steadily worse until all the fingers are affected to some degree and the palm of my hand too. More worrying for me is the fact that the 'motor function' (that is the strength and dexterity of control) seems to be affected too. So, writing is difficult. I can do it, but, slowly and only for about half a page. From a dental point of view, I can't teach or treat patients as I can't take the risk, so, I spoke to our Head of School and told him what was going on. The dental school has been really great to me throughout all of this and allowed me to pursue a desk job, really, for the last two months and will review matters at the end of July.

Up to date:

Well, things are much the same. I can drive and hold a cup, but trying to do anything more delicate than that is difficult. Interestingly, the consultant said that since I have had two 'relapses' in quite a short time that he is keen that I try some of the 'disease modifying' drugs which are available. Great, that just means popping more pills? Actually, no. I've got to inject myself approximately every two days! I get my own syringes and needles, etc., and after I've been trained to do it (a dentist!!), I've got to make this a disciplined and regular part of my life. The MS nurse sent me a link to a website with several demonstrations of patients doing there own injections...Mmm. I know, I know..I'm a dentist and have been injecting patients for years and years and now, well, I'm not too keen at having to inject myself! Do you have sympathy for me? No, I didn't think so!

A New MS Friend:

I was at a dental study day recently, when I got chatting to a very nice lady whom I've spoken to before, but not for some time. She had obviously discovered that I've got MS and revealed to me that her daughter who is in her early 20s has MS too. She mentioned a few things relating to her daughter, and it came into my mind that I'd like to be in contact with this young lady and quiz her on her own experience. So, we've exchanged quite a few emails in just a few days. To say she's been helpful and informative is an understatement! I don't think I've 'met' anyone so knowledgeable on MS ever. Jenna, thanks! You've been a great help!

Armed Forces Day, 2010

I like to finish with a photo. We went to the Glasgow Armed Forces Day to show support for our serving, injured and veteran soldiers; and, especially to pause and remember those who have given their lives in the many past and present conflicts. It was good to see all those who turned out for the events in George Square. After the speeches, marching, an amazing flypast of a Dakota (four times!), there was music and a dance group called the Kennedy Cupcakes doing some 1940s routines.

Loch Tay Crannog Centre

I've been interested in crannogs for years. I read about what Stephen Lawhead imagined life would be like in a crannog in his fictional Celtic trilogy. Since then I've discovered that scores of crannogs remains have been discovered in Scottish lochs. A crannog is a dwelling place built on stakes or perhaps an artificial island on water. The remains are plentiful. Even as locally as Loch Lomond, it had been known for a long time that some of the islands appeared to be man-made. A couple of the conglomerations of stones are easily visible at the east end of Loch Tay. These are bronze age dwellings. On Loch Tay, a crannog has been reconstructed as a tourist attraction and also as a means of raising money for the continued underwater excavations which are revealing a wealth of artifacts.

This photo is from the Royal Signals Association website and it's a lot better than the pictures I took!

There is a small museum at the centre with some of the artifacts that have been recovered from the loch. The difference between land archeology and underwater archeology is that under water much of the organic material is preserved, such as wooden objects or a bracken floor that collapsed into the water. They're recovered everyday wooden utensils and some of the large timbers that would once have supported the crannog. Because of the cold they give you a blanket cape to wear and give you the guided tour of the place. I loved it.

After seeing the reconstructed crannog, the guide (a girl called Marion) demonstrated several ways that bronze age people would have cut wood, ground corn or made fire! That was amazing. She spun two bits of wood together until there was literally a tiny mound of smoldering sawdust. This was then put in a 'fire bowl' of fine wood shavings, and straw, etc. She then began to gently blow and blow and blow. I thought she was going to be smoked into failure, but, she persisted until the flames burst into life - and we were all really impressed! For anyone interested in Scottish history and archeology it's a great day out. The historians and archaeologists can only speculate why crannogs would be built in the first place. Could it have been for security? Well, possibly, but there weren't all that many people around in those days to be a threat. Could crannogs have been built to protect their farm animals and the people themselves from wild animals - wolves and bears? Possibly. But then, I discovered the real reason! Twenty-feet out into the water...there are no midges! These bronze-age folks weren't daft!

Summer's here!

Let's forget about the winter now that summer's here! It's a glorious day today with that lovely warmth in the air that makes it feel so summery (if that's a word). I sat outside this morning with a book and a cup of tea. Who could ask for more?

Health update I had another MRI scan a few days ago which followed on from my episode of numbness from the waist down. It's a strange experience. They make you get changed into 'scrubs' - the sort of pyjama clothing that hospital staff work in these days. They also make sure there is nothing metallic on you or in you (like a stainless steel repair to your bones or clamps to blood vessels) that would heat up during the scan. Ear plugs duly placed and then your head is well and truly clamped back and sides with a weird basket-like contraption over your face that looks like a Norman knight's helmet. Thereafter, you are slid into the large tube head first and told to lie as still as you can. A squeezy rubber bulb is given to you in case you feel you urgently have to get out of the MRI scanner. Actually, it sounds worse than it is. Some patients understandably find it a bit claustrophobic as it's like lying in the locker above your seats on an aeroplane, but, I could fall asleep quite easily if it wasn't for the noise. Once they start the scan, it buzzes every few seconds: a grating metallic noise that I think would be intolerable without the earplugs. The whole process lasts about 30 - 40 minutes. This time I was taken out midway through to give me an intravenous injection of a contrast medium which will no doubt show the MRI in glorious technicolor! So, that was that. I go back in a fortnight to hear what the consultant's got to say about it all. I'm going to ask him if there's any way I can get some of the images to post here! I've seen them before. The MRI takes 'cuts' or 'tomographs' every few millimetres through your head. The one I really don't like is the section through brain and eyeballs. It looks disgusting!

I did manage to get back to work a few weeks ago and our management have been very accommodating in allowing me more suitable work while I'm still coping with some numbness. Bless them all! And I mean that.

Annual MS review

I went to our local neurological specialist centre today for my annual review. It's timely as I've had a marked deterioration over the last few weeks and been unable to drive and walking as well as balance is affected. Thankfully, there has been a slight improvement over the last few days so I'm hoping that I'll fully recover soon. My first question was about the diagnosis - whether he still thought it was primary progressive MS since the recent episode has been a sort of 'relapse', which I didn't think happened in PPMS. He gave the same answer to me as I've given to others, namely, that disease categories are man made for convenience and the diseases themselves don't always oblige by falling tidily into a nice academic category. Secondly, he said that relapses or similar did happen in PPMS. He wants me to have another MRI scan in about ten weeks time. I can't have it sooner as I've been on steroids which can affect the results of the scan. I've to see him again after that. I found the last MRI scan OK. I was warned about the claustrophobia risks, etc as you're inside a compact vibrating tube, but, I could have fallen asleep if it hadn't been for the noisy vibrations.     He told me that symptoms could take 8 - 12 weeks to resolve, but, it was a good sign that some of the feeling was returning already. My son, being home just now, took me in and actually came into the consultation with me. After that? What do you think?! We went to the West End of Glasgow and had lunch. Male rule no. 1: every event should be marked by eating! (girls send greeting cards - boys eat!).

MS update March 2010

Not been so great recently. I've developed a parasthaesia (partial numbness) in lower limbs, really the lower half of my body. It's one of those annoying things as I can't feel my feet properly, therefore it would be unwise to drive. I contacted the hospital and after they weighed up one or two of the other effects this is causing they decided I should be on some high dosage steroids for five days to try to defuse this and get it back to something like normal. So, steroids. They are used as anti-inflammatory drugs and reduce inflammation in some known ways and other ways that are not fully understood. The side effects are a general feeling of being unwell, a very red face, heart racing and difficulty sleeping and most annoying of all I get hiccoughs (hiccups for those not UK spellers!) which can last for hours and hours and stop me sleeping. I left Susie alone in the bedroom as it must have been driving her totally crazy! So, tonight is the fifth and final dose and I'll be glad to see the back of these tablets. One more day of persistent hiccoughs and then hopefully, normality.

On a positive front, I saw a pain specialist a month ago who adjusted my pain medication and I must report with some measure of delight that my pain control is better than it has been in two years. This has a knock-on effect that I have more energy in the evenings and can get more done. I'm so grateful to the staff at the Beatson in Glasgow who deal with cancer patients, but, also chronic pain patients. It has been a delightful experience. Thank you!

So, where are the snowdrops?

I'm going to skip the usual excuses about it being a long time since I updated this blog. C'est la vie.


Okay. It's cold. Very cold. It got down to about -15C here or thereabouts over the New Year perion, and if we thought that it was a blip in the winter weather we were wrong. It's been fairly consistently below 0C and, here we are on 16th February and it was -7C last night. The loch we live beside has been frozen over for almost two months and although it threatened to defrost on one occasion, ol' Jack Frost soon sorted that out. When it had been solidly frozen for a few weeks Susie walked across it. I'll try to put a link to a small videoclip she made.   Susie walking on Carbeth Loch   In fact, when the temp rose to around -2C we actually thought it was quite mild!

So, what's new?



Our son is serving somewhere in Afghanistan. We're not told where. Many friends and family and even people we don't know have sent him out parcels over Christmas. Thank you for that. We appreciate your kindness deeply. Around Christmas, he was almost snowed under with all the things you sent. I think it was a temporary problem. One of his colleagues, Tommy Brown, was killed just before Christmas. Not surprisingly, this had a terrible effect on his fellows who were with him. I can't imagine how difficult it must have been - and still is - for his family. How difficult to pick yourself up and go on after losing a young son, friend, brother or husband. I don't know much else about him other than that he is much missed.

We've only heard briefly from Afghanistan in these last few weeks and can only assume that our son is busy with the current push forward of the coalition forces. However, the night before last Susie got a message through facebook from another lad telling us that he was alright. That was good news indeed.

MS update:

There's little good news here, which I suppose is why I find this particular part of my blog hardest to write. My main difficulty is pain control. I have long-standing pain in the left side of my head. Through the kindness of a dear friend I was advised to seek a referral to a Professor of Palliative Care at the Beatson Cancer Centre in Glasgow. The building is new, light and colourful. The staff couldn't have been nicer and the Prof. himself was kind and thorough. He explained something that I should have known: namely, that although I'm feeling the pain 'in' my head - the distribution of the pain indicates that it's the sensory nerves 'on' my head causing the problem (C2, I think).  In a 35 minute consultation, he asked me lots of questions and then examined me to exclude an arthritic cause. Then he listed a fair number of drugs which could be of some value to me. This was the point that Susie, who'd asked if she could come along, almost disgraced herself! As the professor went through his list he mentioned on option with other connotations: methadone. This was too much for Susie who, having worked with addicts on the street in a very compassionate way, imagined me gaunt and hunched over like many of the poor souls we've had to deal with over the years. Susie exploded into laughter! The prof. looked at her as if to say "Is there something wrong with her?" Explanations followed and all was well, but dear, dear me....
Needless to say, I left the building with a prescription which I think is helping a bit. I'm trying to reduce one of the three drugs I'm on as I feel a bit spaced out some of the time, but I'll see how it goes.

Preaching

A couple of times over the last few months I've found that a message has formed in my heart that I was keen to pass on to the Church. Interestingly enough, Alison, our minister in our Glasgow Church spoke to me a month or so ago saying that if I ever felt I could take part to let her know. So, a couple of /Sundays ago I spoke from that part of scripture where Peter says "Lord! Call me to come to you on the water!"
I wanted to convey the message that we don't have to wait until God speaks to us or in some way draws our attention (for He is always the source and initiative of all things good), but each person on this world has the ability within them to "call on the Name of the Lord". What will God say to you if you call on Him? and what would you call on Him for?