Category Archives: Multiple Sclerosis

Being Mobile Aids Mobility

When you have a disability that results in lessened physical abilities, it makes sense to listen to ‘the experts’, doesn’t it? I have Multiple Sclerosis (MS), and the experts have told me that being active will, or at least might, help me to regain, or retain physical ability.

When I was diagnosed with MS, my new neurologist told me to walk for half an hour. I think he meant to do this every day, but that I should work up to that level of ability, because at that time, walking for half an hour didn’t seem to be something I was physically capable of. MS had hit me and my muscles on my right side, including leg muscles were very weak.

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My new medication for MS seemed to help me though, and the exercise I began doing helped too. I’m on a new medication now, an easier and more pleasant one, and it seems to be working even better for me. My initial medication had been the injectable once a week one, Avonex. I didn’t like sticking a needle into my thigh muscles, left leg or right leg, but I did it, for two years.

Then a new medication come to Australia, Gilenya, which is a little capsule that you take once a day. It is much more acceptable to me, so much easier to have my G at breakfast time, and no nasty injections in my muscles! I still don’t walk for half an hour every day though, even though my neurologists words, ‘Use it or you lose it’, echo in my mind.

I do try to add walking, and other exercises to my life, every day. I park a little bit further away from where I’m going, or sometimes (not often enough!) I get my hand weights out and do some lifting for a while. I have to admit that in reality, my weight lifting is fairly negligible, so  don’t brag about it. At least it’s something though. I certainly feel better, if I am being more active, anyway.

above the fish pond

Getting out into the garden, walking around, looking at the flowers and trees, and the vegetables too, these things help me to get sunshine, get active, and sometimes get yummy things to eat. And if I’m in the garden, I am standing, walking, bending over and other active things. Being in Nature is good for me in other ways, good for my happiness, my feelings of greater connectivity, as I think about all of the Nature out there, and my own part is the whole world!

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Spirituality, and all of that connecting with Nature stuff resonates for me. I am a secular person, not religious one, but I believe in the benefits being in and with Nature gives to me. I feel happy when I can see trees and clouds, and all of the creatures (not the snakes, I never like to see them, not the poisonous ones anyway!) And of course, being out in the sun can help my body build up more vitamin D, which is good for me. Too much sun though can lead to skin cancers though, so it’s a matter of getting enough, but not over doing it.

A lot of life is like that. Living a good and healthy life is all about moderation, a lot of the time. I like moderation, a little bit of wine every now and then, a small amount of chocolate, little bit of cake or other desserts occasionally, and then plenty of vegetables, with moderate amounts of fruit, meat, grains …

I get out and about, my writing group once a week, and other writing related things too. I take an interest in my community, and do various things to help others as and when I can. I’m also conscious of the mental health benefits to be gained from keeping my brain active too. Writing helps with that, connecting with online communities can help, being active in a variety of social media things, but again, in moderation …

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I will continue living my moderately mobile life for as long as I can, sticking with my medication, and staying with Nature too. I love the trees and I hope the trees love me!

 

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Specialist Visit Tomorrow

When I visit this specialist, we’re talking about the chronic illness I have that most disables me, of course, Multiple Sclerosis (MS). This person has been my neurologist since I first knew I had MS, because he is the person I was sent to by my own GP, when I had the results of the CT scan that indicated something was wrong, but more information was needed.

This neurologist, or ‘my neuro’ as I now refer to him, sent me off for another test – an MRI scan. When I visited him again soon after that, to talk about what the MRI revealed, he told me I had MS, and that was it. We talked about what that meant, I think, but we talked most about which medication I would take. This was back in 2010, and the options for medication were the choice of injectable medications, or monthly infusions. (I could be wrong, that may not have been an option, can’t remember).

I chose the needle to happen weekly rather that daily or  every other day, or every three days, and there it was, I was on a regime of injecting myself in the thigh muscle on the weekend, every weekend presumably for the rest of my life. I wouldn’t have thought, previously, that I could have done that, but it turned out I could do it, and I did it for two years, rather than for the rest of my life.

After regular visits to my neuro, (and my own following of the medical news regarding MS) I learned of the arrival of a medication I could take via a daily capsule, rather than one via a needle. There were some issues to be aware of, and tests and checks to have done first, but the thought of this wonder drug was marvellous and I jumped at the chance of saying ‘No, to the Needle!’

So I went through the required protocol, had my heart checked, and my eyes examined (macular), everything went well and so Gilenya came into my life. This medication went well for me and is still going well, some six years later. I have blood tests done reasonably regularly, to check whether everything is going well (it is), and I see my neuro, to basically talk about how I’m going, and marvel about my good health.

But there are new drugs available, more and more all the time. Perhaps we will talk about them. Or we may discuss my most recent blood tests, and, well I’m not sure what else. I had mentioned possible cognitive issues, the last time I saw my neuro, some four months ago, I think it was. He did a bit of a test to check out that, and was happy to tell me I was cognitively 20/20 or something like that. He may have pointed out that I wasn’t getting younger, and that was normal, I’m not sure.

Anyway, this neuro visit will happen tomorrow, and I will report back on what happens, which I assume will be nothing much at all really, but time will tell. I probably should think of some questions to ask, but what? Who knows. Perhaps I’ll search the internet to see if I can come up with something, but maybe I’ll just leave it all up to him. After all, I may have the lived experience, but he is the expert …

That Old “Use it or Lose it” Idea

Yes, when you have Multiple Sclerosis (MS), regaining, maintaining and retaining your mobility are very important things in your life, for most of us with this illness. MS can take away your ability to walk, or walk far, and it affects your other muscular abilities too. Medical intervention can certainly assist with this, and life can go better if or when you find the best medication for your needs. But medication is only a part of remaining mobile, and physical exercise is another and very important part.

When I was first diagnosed with MS, my neurologist early on, encouraged me to walk, to keep as active as I could, and work at walking on a regular basis. He definitely said those very words to me, Use it or Lose it. At that time, I wasn’t able to walk very far, but I’ve certainly kept that thought in my mind, and I made up my own exercise programme, using Wii Fit Exercises. We already had this device, and once I was able to, I got stuck into working my way back to the high scores I’d made previously, before I was hit by MS.

 

I have definitely benefited from these exercises, even though I don’t always do them particularly often. I always know they are there, waiting for me to get myself up to my desired levels of activity. Today, for example, I switched on the Wii Fit machine, ready for at least a weigh in, and a little bit of action! The weigh in wasn’t quite as good as I’d hoped, indicating I weighed exactly the same as I did last time I weighed in, a week earlier. So that convinced me to push myself a little and do a slightly longer workout.

I did a simple muscle exercise going up a level on what I’ve been doing recently, then did another exercise, a balance one, telling myself I had to get 250 points or I had to do the exercise again. This was the Ski Jump exercise, and I thought I’d get those 250 points easily, and then I’d move onto another couple of exercises and then call it a done deal. But I didn’t get those points next time, or the time after, or the time after that! I didn’t give up, I kept going, putting in one good jump and then a rubbish one, or a rubbish one and then a great one … Frustrating, but I kept on going. Eventually I got that exercise done, and gladly moved onto something different.

hula hoop for blog

I did the Hula Hoop exercise, and got a good enough score, not a highest one, but not too bad. I felt good about that, and kept on, doing exercises I often did, including the basic Steps exercise which takes ten minutes. Anyway, I was committed to exercising, so I kept going, ultimately doing thirty minutes of exercises and certainly giving my body a good workout. It didn’t make hot and sweaty, but my muscles all knew they’d been working, and that’s what I need to do, and so I’m glad I did it. I hope that the next time I switch the machine on, there might be a bit of a weight loss.

Losing weight isn’t a big motivating factor for me. My weight is within the ideal range, but at the upper limit, not the middle, where I’d prefer it to be. A healthy weight is a good thing. No, my main reason to do these exercises every now and then is to keep my body active, as I always work on keeping my mind active. Cognitive skills are important, but I consider myself to be good at keeping my brain active, writing, staying connected socially, challenging myself from time to time, and being involved with all of the things going on around me.

I feel I have the best ratio of activities for myself, and I feel I’m going well with my life!

Latest Neurologist Visit

I visited my neurologist yesterday, to find out the results of my most recent MRI scan. He was very pleased with my results, and I am too, really. There is no sign of any new scarring, or any other nasties there, so obviously the Gilenya capsules I take every morning to deal with Multiple Sclerosis (MS) are working, and working well. I am certainly happy about that, and taking the little capsule is much nicer than having to inject myself in the thigh muscle once a week, which was my initial treatment option after I was diagnosed with MS.

The injections, Avonex, were of some help with my MS, but the Gilenya is more effective. So my MS seems to be under control to a great extent, and I don’t need my cane or my walking stick, and I certainly don’t need my walker. My neurologist tested my memory, and my thinking skills, as well as a brief test on the strength of arms, and also tested my peripheral vision, all with good results. This is all very good news. So why, I wonder, do I feel dissatisfied?

My neurologist is thrilled with how I’m going with this wonder drug, he’s far more thrilled than I am. Well no, that’s not really true, I’d hate to go back to being as frail as I was back in 2010, when I ended up going to visit a neurologist for the first time, and so met this man for the first time. I never really took to him, but I certainly don’t hate him. He just seems too flippant, and so sure the medicine he’s put me on is the only reason for my better health,. even though he is also happy that I’m good about having a good diet too.

It’s all a bit mixed up in my head. I’m quite well for my age, especially considering I have MS, and my memory is good, etc, so why does my mind get in a muddle sometimes … Ah well, I think it’s time for me to sit back and just be grateful that I have a medication that is easy to take, and is effective. That will be my plan, be grateful, and stop trying to find reasons to be unhappy about all of this. So Carolyn, don’t be an ungrateful little wretch, don’t worry, be happy!

Caffeine may Help People who have Multiple Sclerosis

Now this is excellent news, I made myself another cuppa when I read about it today:

Multiple Sclerosis Disability, Fatigue Reduced With Caffeine Intake

https://www.neurologyadvisor.com/actrims-2018/multiple-sclerosis-disability-caffeine-benefits/article/741584/

above the fish pond

This was news from a very learned conference that happened in earlier this year, and anything that tells me that drinking coffee is a good thing to help me with my MS, well that’s a great thing, isn’t it? I love my coffee, and if it’s also helping me to deal with the fatigue, and assisting with my mobility, that’s surely a great thing.

I don’t have a lot more information about these results, but that’s good enough for me for now. If only someone can find great benefits with other things I like, chocolate for instance …

Sitting outside with a cup of coffee and looking at trees and the sky, if only that was good for helping with symptoms of MS! But of course, being at peace, and feeling unstressed is good for all of us, including peopl;e who have Multiple Sclerosis. Being stressed can make my symptoms come back, until I can get over the stress …

Even better, further ‘investigations’ ie, google searching, has shown some more positive information toward caffeine being of assistance for those of us with MS, hooray to the mighty cuppa coffee!

 

 

Not Too Hot & Not Too Cold …

Oh, if only I could find that sweet spot of not too hot and not too cold. Sadly though, I’m going from too cold then too hot and then back to too cold again. I know it’s a little too hot outside or maybe even much too hot, I haven’t been outside for hours, not checked out the outside temperature. I just know how this room feels to right now, and it’s a little too cold …

Ah these first world problems, I have air conditioning and can’t find the just right temperature, when there are people in other towns, or other countries who are dying of thirst, or freezing to death. It’s a sad thing, I’m very aware of that. I give some money to charity – to Medecins Sans Frontieres, every month, and hope my donation helps some people.

Our house has some insulation. It was put in quite some time back, and we are assuming it is still more or less effective. Certainly our air conditioning is effective, keepin us cool or warm, as needed. But as the woman of the house, I prefer the house to be a little bit warm, whereas my husband prefers the house to be a little bit cool. I can always put on some more clothes though, and there’s a limit to how much he can take off. Once you’re down to underwear, that’s about it!

We also have solar panels on our roof, and these help us with some of the costs of our air conditioning. I love these blue sky days we’ve been having, sending down the sun’s power to our panels …

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The MS I have might play some part in the temperature troubles too, I’m not sure. Sometimes at night when I’m in bed trying to get to sleep, I can feel both too hot and too cold, both at the same time. It might not actually be an MS thing, but that’s what I’m putting it down to. If I shrug and say, oh, that’s just MS, I can just get on with trying to live my life as best I can, pull up or throw off my light blanket, and drift off to sleep.

Many people have big problems with sleeping, but I’m not one of those people. I drift off to sleep fairly easily, and don’t wake up until after I’ve had a good bit of sleep. I have to head off to the loo for a tinkle some nights, but not every night, and can go back to sleep again fairly easily. I certainly don’t have to worry about my home being blown up, or not being able to eat enough food. My life is a good one, a very good one.

So yes, I have MS, and various symptoms that can go with it, but I am living a great life with MS, just a different life perhaps than I would have been living without MS.

Sometimes I Suddenly Realise Something …

Yes, suddenly something true hits me and I realise I am both clever, for realising it, and incredibly stupid for taking so long to realise  it! Do you ever have times like that, when a thing suddenly becomes obvious to you, and you can hardly understand why it took so long for the truth to hit you? Today was one of those times for me.

Today, in South Australia, particularly in the mid north region the weather is hot, very hot. At the moment the temperature in the shade is apparently 43.2 Celsius. That is hot. We (my husband and I) decided we had to do our washing today, so Graham put the washing in the machine set it off to do its thing.

My part was to hang the washing out and then bring the washing in when the time was right. The machine eventually stopped and I went to the laundry to put the now clean clothes into the laundry basket. When I went into the backyard with the washing, I looked over at the clothesline, and it hit me! The clothesline, or at least half of the line, was in the shade, just a small amount of shade, but plenty enough for me to stand in, between the tree giving the shade, and the clothesline. I could be in the shade and hang out the washing at the same time!

Ananka

In the photo is our first female Pharaoh Hound, Ananka, the photo taken probably about ten years ago. She is standing next to the tree I was standing in the shade of today, but I was further around to the right of where she’s standing in the picture …

Of course, of course, of course! I have lived at this house for nearly thirty years, with the same clothesline, and the same tree. The tree may have just been a small bush when we first arrived, but it’s definitely been tall enough to bring shade to the area of lawn next to the clothesline for a good few of the years we’ve been here. The peg basket is usually on the side of the line across from the shade, and closest to the laundry door, so that’s where I always go to hang up the clothes, near the door, and in the sunshine, whether hot or cold or pleasant, that’s where I go.

But today’s the day I realised I didn’t have to overheat, and feel like my ability to stand up was slipping away from me from the heat. Today I stood in the shade, moved the peg basket around to the shaded place where I’d put the washing basket, and I hung out the washing in the shade, the lovely, lovely shade! I have no idea why it took me this long to figure this out. I also don’t know whether my husband realised this was possible, or even if he would ever be bothered as much by the sun and heat as I am. Well I do know that, of course. He doesn’t have MS, and he isn’t in danger of fading and falling from excessive heat …

I’ve brought the washing in again now, out into the shade from the tree, and then into the sunshine briefly, and back inside with the now dry washing, yay me, and yay to my mind for the slow but great realisation! Do you ever have any of these Ah ha! moments? Please leave a comment and tell me about them, I love reading about these things!