Category Archives: Multiple Sclerosis

Exercising Does Help!

As a person with the chronic illness, Multiple Sclerosis (MS), who is managing quite well, really, I am a good example of a few different things. These are not in any particular order, and some days one will feel the most helpful than at other times. So here is the list:

  1. Exercising
  2. Having a nutritionally sound diet
  3. Living with as little stress as possible
  4. Finding the best medication to help
  5. Having a positive attitude in life

My exercise program is very much an on and off again thing. At the moment, it’s mostly very much On, and I’m feeling the benefits of that, I think. I feel capable of physically doing the things I want and need to do, and I certainly like that! I am a member of the MS Society SA & NT and on their Facebook site recently they had a program of six weeks of challenges, where interested people could indicate their chosen challenge, and report on it and encourage others doing their own challenges. My challenge was to do ten minutes of exercise every day, so I tried to switch on our Wii Fit machine to do at least that much or more exercise, with the machine. Six weeks is a good length of time to set a habit, and now I feel as if something is wrong if I don’t switch the machine on in the morning, unless I am busy doing something else. So far I’ve lost a little bit of weight, which is good, but I also feel stronger, which is great!
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My diet is pretty well a good diet, I get sufficicient nutrients from eating fruit, vegetables, some grains (not enough probs), nuts, and some meat. I also have a moderate amount of coffee, because I love it, but I make sure not to overdo it, and to only drink coffee later in the day if I am going out, and will be home late. I try to remember to drink sufficient water too (not eight cups of water, because I don’t need that much, I’m a small person, and not a super athelete or physical labourer.

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(the plant above is Purslane, a good source of Omega 3 Fatty Acids, which we now have growing at home, and I am trying to eat some of it every day – trying, but it isn’t a habit yet, I hope it will soon though!)

I am currently trying to move into a secular Buddhist kind of life style, and also am looking at the Stoic philosophy tenets. My natural life attitude seems to be that of an accepting realist, one who looks at life, thinks on it, and deals with what life offers to me, or hits me with. I then deal with whatever that is, in what seems to be the best way possible. I don’t overreact, I simply go on with my life however seems the right way to go, thus reducing stress.

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(picture by Simon Kneebone)

I was diagnosed with MS in 2010, and my neurologist advised me to use Avonex, which is and injecable medication, used once a week, with an injection directly into the muscle. So soon after learning I had MS, I began jabbing myself in the thigh muscle, left one one week, right one the next week and so on. This went on for around two years, and worked OK, but I was very glad to change medication to a tablet form Gilenya, which is a little tablet taken once a day, every day. This is easy to do, and a much more  pleasant way to have my MS meds, that’s for sure. This medication is helping me even more than the Avonex did, and I can see myself staying with this MS med for a very long time into the future.

Having a positive attitude to life. Hmm, I’m definitely a ‘glass half full’ kind of person. If there is a good side to anything at all, I’ll find it, it’s one of my valuable skills! Anyone I meet could become my next good friend, and I treat every opportunity, at the very least, as a new chance to learn. If things go wrong, wow, what a grand time of learning new things that can be! If and when I do something incredibly stupid, which happens more often than I’d like, well at least that’s one more thing I know I should try hard to avoid happening again! I know many people and I’m glad that I can be friends or at least friendly enough acquaintences. Or if they are truly toxic people, I know I don’t need them, and am comfortable in offloading them …

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Life is a crazy mixed up bunch of stuff, and I use my life to measure up the good, the bad, and take what I want from it all! I’m currently putting together some ideas, and wise thoughts of my own, with the plan to make it into a published book at some stage, and I have some other ideas for books to come in the future. Life seems to be a very good thing, from where I’m looking!

I write about these things, and I love to talk to others about these things too! If you need a Public Speaker, ask me, I’ll do it if I can get there!

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Multiple Sclerosis (MS) in the Garden …

Why MS in the Garden, you might ask, why is the garden relevant to having MS? I have to admit, back in 2010, when MS first came into my life, being in the garden was certainly not on my list of ‘Things to to”. At that stage, I was struggling to even walk, inside the house, so going outside was not even considered.

But times have changed. That first MS relapse, when I was hit hard with MS symptoms – muscle weakness on my right side from arms to legs, tingling in my hands, feet and legs, mostly. The weakness was something I’d never dealt with before, but the tingling in my hands and feet had been with me for some time. tingling and numbness …

above the fish pond

Anyway, I saw my doctor, then a neurologist, was diagnosed, provided with medication, a walking stick and then walker, and life calmed down a little. I learned how to inject myself with a medication, which I did once a week, and I eventually began to get over this relapse, and headed to my new, normal state.

I was still nowhere ‘back to normal’ and I now acknowledge that where I am right now is probably as good as my ‘normal’ is going to be. But how I am now, some eight years after diagnosis, after a change in medication to a small capsule daily, rather than an injection, well, how I am now is pretty darned fine!

And now that I have got to this better way in my life, I am certainly heading out into the garden a lot more. My husband has retired from work now, and I’m happy to leave most of the hard work to him, probably just as well, because I was never going to be as strong as him, so he is far more suited to the harder work.

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But I can harvest vegetables, fruit, and herbs, I can pick flowers, can do the watering, I can let the dog out into the garden and back inside (& deal with whatever needs to be dealt with there). Being outside in the garden is one of my most favourite places to be. Whether out there, gardening, or just out there, looking at things, plants, animals, clouds, birds, & the beautiful big blue sky, I love to be in the garden!

(Missy loves to be inside on her sofa)

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So Missy may prefer being inside at times, but now that I am able to do it, I am very fond of being outside, where Nature goes on doing its thing. I can be out there with Nature, being inspired, seeing lovely and/or interesting things, & having a lovely time. I am very grateful to have the lovely garden where we live, and I will continue to enjoy it!

I will always try to remember the time when just being outside didn’t seem to be an easy thing to do, and I will treasure all of the good things that go on happening, outside whether anybody is out there or not. If you have a special place to be, I’d love to here about it, please leave a message and tell us.

 

Enjoying My Peer Support Group

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Today I went to the Multiple Sclerosis (MS) & Parkinsons Peer Support Group, in Gawler. This was my first meeting at this monthly group, for some time. The last time I was there, those with Parkinsons weren’t a part of the group, but they connected to the group more recently.

There were people at the meeting I didn’t know, those with Parkinsons and their supporters, but they all seemed like fine people, and fitted in well. Parkinsons and Multiple Sclerosis are alike in many ways, but different in others. All in all, there were many similarities, and we got on well.

Being at the group reminded me of how I was when I began the Gawler MS Peer support group, relatively soon after MS came into my life. I don’t remember when it was, but I as diagnosed with MS in 2010, so it was after that. Where the group meets now, is a fine venue, near the Gawler Hospital.

Parking was not so easy this morning, and it is often a bit of a problem to get a park really close to the venue where the meetings are held. The hospital has lots of parking a bit further away though, so that was fine. The MS Society has a Facebook page and there is a challenge being held, for interested people to name their challenge and do it for six weeks, with various prizes to people deemed worthy of being awarded.

I jumped happily onto this challenge, and wrote on the relevant Facebook post that my challenge would be to do ten minutes of exercise, 7 days a week, for the six weeks. I’m doing well with the challenge, which is in its second week. I either walk, do Wii Fit exercises, or do some other kind of exercise. While I may go without actually doing any of these things on the occasional day, overall, I am doing more than that, if you add all of my bits of exercises together.

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There was a little bit of talk about this challenge at the Peer Support group this morning, but I don’t think any of the people there are involved in it. There were older people with MS there, and people who are perhaps more physically ‘challenged’ by multiple sclerosis, than I am. Several of the people at the meeting who I know, commented on how good I was looking.

There were people with walkers, and at least one person with a walking stick, while I was able to walk briskly into the room where everyone was sitting and listening to the speaker, the manager of the MS Society SA&NT. It seemed that it was going to be a morning tea, and there were lots of delicious cakes and biscuits there to eat. Some people where having coffee, but I was happy with a couple of small and yummy things to eat, and no coffee needed.

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It was a fine atmosphere, listening to the talk about upcoming events, possible things in the future, and plans various people had for options and ideas. This gathering was a small one, it being school holidays may have been a reason for that, with some people having children home, or perhaps being away somewhere on holidays themselves. Having MS can be a challenge, but who doesn’t love holidays?

I was interested to hear of some of the future plans of the woman who took over this group when I left off leading it. I’m excited for her, she seems to be moving into interesting things, relating to the Society. Good for her! It’s good to see something I helped get started, being held in such good hands.

So it certainly seems Gawler is a fine place for those with MS, with this group providing a supportive place to visit and meet with other people who truly understand the problems you might have, from having MS, which can be many, and can be troublesome indeed. Yes being with your peers, being understood, these are great things to have, and that is why I love Peer Support Groups!

If you have an illness, I strongly recommend you join a peer support group, if there is one available, you will be amongst people you understand, and can give you news and clues that will help!

 

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!

 

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.

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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!