exercise – Another MS Warrior

139 I’m back!

2022 hasn’t started quite as well as we were all hoping, with all our lives still being impacted by Covid 19, Brexit and worries about our financial futures. I am trying hard to muster every ounce of optimism I can find, but it’s not always easy.

I’ve been struggling to think straight for the last few months, let alone write, so my blogging has totally fallen by the wayside. During the last year, I have retired from work on medical grounds, worked my way through complicated pension paperwork and evidence, sold my house, been rescued by family and eventually moved to a rented ground floor apartment nearer to my children and friends. It has been a lot to process, but I think I’m finally reaching a point of acceptance and can now begin to look more clearly to the future.

My brand new park home has never materialised, so I have had to change my plans. I am in now the process of buying a lovely new apartment and will definitely feel much more secure once the solicitors have done their stuff and the place is finally mine. I won’t say any more on this for now, just in case I jinx it!

As always, my MS has been making itself known. I have had several falls in various situations and suffered lots of bruises. It really does hurt when you hit the ground when you’re this size!

I had an MRI scan in July, which did not find any new disease activity in my brain and spinal cord … this is the first time a scan has revealed this outcome. It’s a cause for cautious celebration, but sadly, it doesn’t mean that my disease is no longer progressing. Hopefully it means that the DMT (Disease Modifying Therapy) I’m taking (Tecfidera) is helping. I’m going to do a future blog post on MRI, progression without visible lesions and “smouldering MS”, so will talk about this more then.

I am still thinking about HSCT, but two years on, have much more doubt than I did previously. I’ll do a future blogpost on this at some point too and am mindful of the need to be transparent about funds raised as well.

In the meantime, I’m going to spend the next few months researching what I can do now, to help me to live my best life with MS and putting what I can in place. I have started a bit of a list and will add to it as I begin my exploration. I am also open to helpful suggestions if anyone has any.

LDN (Low Dose Naltrexone)

“Low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases”. Low-Dose Naltrexone | National Multiple Sclerosis Society

Fampyra

“Fampyra is indicated for the improvement of walking in adult patients with multiple sclerosis with walking disability (EDSS 4-7)”. Fampyra

HRT (Hormone Replacement Therapy)

“A further observational study in 2016 looked at 95 post-menopausal women with MS, of whom 61 had used HRT. The use of HRT was associated with better physical quality of life. It is thought that female hormones may have a neuroprotective effect and this is why HRT may be useful”. MS Trust: Menopause

FES (Functional Electrical Stimulation)

“Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord”. Functional electrical stimulation (FES) | MS Trust

Red Light Therapy and Near Infrared Light Therapy / Infrared Sauna

“Infrared light can penetrate skin and affect structures lying underneath, and Lyons first thought of applying it to MS after talking to colleague Janis Eells, who had studied its retina-healing powers. Other researchers are exploring infrared treatments to help with diseases such as Parkinson’s and muscular dystrophy.” Red Light Therapy

Improving Gut Health

“The microbiomes of people living with multiple sclerosis (MS) are differentTrusted Source from those of people without MS. Based on this information, the hope is that new therapies can be developed to help people with MS”. Healthline: What’s the Latest on the Link Between MS and Your Gut?

Taopatch

“Taopatch is a patented wearable nanotechnology device that combines acupuncture with light therapy”. Taopatch

Hyperbaric Oxygen Therapy

“Hyperbaric oxygen therapy (HBO or HBOT, also called high dose oxygen therapy (HDOT)) involves breathing oxygen through a mask in a pressurised chamber, similar to a diving bell”. Hyperbaric oxygen therapy | MS Trust

Cannabidiol (CBD)

“One in five people with multiple sclerosis (MS) surveyed in 2014 told us they’d used cannabis to help with their symptoms. They said it can help with muscle spasms or stiffness (spasticity) and pain”. MS Society: Cannabis

Revitive

“EMS is a world renowned technology that works by delivering electrical pulses that activate nerves in the body, causing muscles to contract and then relax”. Revitive

Circle Rehabilitation

“At Circle Rehabilitation, we build bespoke private treatment and rehabilitation programmes for people with multiple sclerosis. Our aim is to build your independence as much as we can. Our rehabilitation programmes are medically-led – your care and rehabilitation is overseen by one of our specialist rehabilitation consultants and physicians”. Circle Rehabilitation: Multiple Sclerosis Treatment

The MS Gym

The MS Gym

Exercise

Diet

Car with automatic gearbox and other adaptations

I want to finish by wishing you all the very best for 2022. Once again, I have been very poor at staying in touch with the people I care about in recent months (years). Between lockdowns, my anxiety and increasing disability, I know I have neglected some people. Hopefully once I’ve moved and started to take better care of myself, I can begin to put that right ❤️🤞🏻

Take good care of yourselves everyone X❤️X

43 Lets talk about diet

I’ve been researching MS since before I was diagnosed and something that comes up, time and time again, is diet and lifestyle.

There are numerous reports of people halting their progression and even reversing their symptoms, using diet and lifestyle changes alone. Other diets are promoted for those with any autoimmune disease (I have two!). Most of these diets involve eliminating gluten, dairy, eggs and processed food completely.

A few years ago, before my MS diagnosis and when my Hashimoto’s Disease* was particularly aggressive, I saw a private Functional Medicine doctor, in a desperate attempt to find a way to feel better. After numerous tests and discussions, the doctor identified that I have an over reactive immune system and the root cause of this was likely to be “Leaky Gut Syndrome” (not at all what is sounds to be!). Basically, my digestive system was reacting to a range of factors, was inflamed and damaged, causing molecules and pathogens that would normally remain in the digestive system, to leak into the blood stream. My body then realised there were undesirable molecules and pathogens in my blood and tried to fight them off.

Unfortunately when the body’s immune system is in full attack mode, it can’t always tell the difference between undesirable food molecules and proteins which are part of the body.

I had a blood test which revealed high levels of antibodies to a large number of everyday foods in my blood. The doctor advised me to eliminate these for at least 3 months. The list included gluten, milk, cheese, eggs, cucumber, soya, beans, nuts, tofu, radishes etc etc. I was vegetarian at the time and found I had to reintroduce chicken and fish, as there wasn’t much left that I could eat!

I worked hard to heal my leaky gut. I did this by taking digestive enzymes with every meal, taking a high quality probiotic, eliminating all the foods on my list, adding a spoon full of powdered collagen to my food daily and by eating plenty of fruit and vegetables. I believe being on more appropriate thyroid replacement medication helped too. I also took supplements to deal with the vitamin and mineral deficiencyies I had developed. This worked really well, but it was hard to eat such a restrictive diet and although I felt better and my thyroid blood levels improved, I gained weight!

You can read more about leaky gut syndrome here …

Healthline.com

It should be noted that many doctors do not recognise leaky gut syndrome as a diagnosis (although Intestinal Permeability is recognised) and there is no agreement on this being a definitive root cause of autoimmune diseases.

Here’s what the NHS has to say about leaky gut syndrome …

NHS.uk

Over time, I have gradually reintroduced most of my banned foods. I no longer drink cows milk (I have developed a love of coconut milk!) but can’t live without cheese!

I’ve experimented with reintroducing gluten and it’s hard to say if it makes a difference. Gluten is considered, by some, to be the number one potential trigger for autoimmune diseases. At the moment, I don’t eat gluten containing products at home but don’t worry too much if I consume a little when I’m out.

I had a go at the “Wahls Protocol” earlier this year but found it impossible! There are different levels to the diet and you need to get to level 1 to really benefit (according to the book, anyway). This involves eating 9 (yes … 9) cups of green veg per day and also the consumption of “organ meats” 🤢 …it was never going to happen! The Wahls Protocol was devised by Dr Terry Wahls, who has had considerable personal success in reversing some of her MS symptoms. There is considerable speculation online that she also had chemotherapy to dampen her immune system, however, this isn’t mentioned in her book!

I’ve been recommended the “Overcoming MS” approach created by Australian Professor George Jelinek, by someone who has met the man himself! This is a diet based on plants and fish and very low fat. I have tried very low fat diets in the past (in my yo-yo dieting days) and don’t feel this is the right approach for me. I remember experiencing low mood, that my skin and hair really suffered and my nails became thin and weak.

Another interesting approach is that of Canadian MSer, Matt Embry who has devised a diet and lifestyle approach he calls”MS Hope”. This diet also eliminates gluten, dairy and eggs.

There is also the Paleo Diet, the Autoimmune Protocol Diet, the Autoimmune Fix and the Anti-Inflamatory Diet, to name just a few. .

The approaches mention above also include living a healthy lifestyle as an important part of the protocol to support fighting MS – regular exercise, limited alcohol, sleeping well, managing stress, meditation etc

At the moment, I am trying to look after myself and lose weight by eating a low sugar diet which is high in fibre, protein and “good fats” (roughly following the Blood Sugar Diet but Michael Moseley). I’m still avoiding cow’s milk, gluten and soya. I’m also going to an MS yoga class when I can as well as Aquafit when I have the energy! My GP has referred me to a supported programme at my local gym where I will be allocated a trainer to help me get back into exercise. I am listening to a relaxation app on a regular basis, trying to go to bed early (I am a night owl) and generally pacing myself (or conserving spoons).

This approach does impact on my social life and on things I might want to do, but I’m feeling ok at the moment and determined to be in the best shape I can be so I’m ready for HSCT 💪🏻

*Hashimoto’s Disease is autoimmune thyroid disease. More info can be found here…

Thyroid UK

37 Some ramblings about weight gain

I saw my GP today to talk about various things – MS, treatment options, hypothyroidism (I have that as well) etc. She decided to check my weight and blood pressure while I was there.

Obviously, I’m very aware that I have gained weight over the last few years. Lots of things have contributed to this …my age is one (honestly once you hit 50, anything more than the odd nibble of celery causes weight gain).

Anyway, my weigh in revealed that I am now the heaviest I have ever been (including when 9 months pregnant!).

I feel that MS is a major cause of my weight gain. A few years ago I was several stone lighter, at the gym two or three times a week and generally pretty energetic. My favourite class was Body Pump – a high energy full body work out using weights.

Ok, I didn’t quite look like this, but you get the picture!

I felt great, strong, confident …I’d love to be able to do it again.

As my MS has affected me more and more, I have become less and less active. I wish now, that I’d pushed myself to do more – perhaps not body pump – but not to have given in to it so much. The symptoms of MS make exercising so difficult and of course, once you lose fitness, you become weaker and weaker, energy levels drop and it’s so hard to get motivated again.

I have been reading a lot about the benefits of exercise to those with MS, in terms of relieving symptoms and to maintain strength in order to cope with those symptoms. Somehow I need to find a way to get back into exercise.

Recently, Niamh, Sophie and I have been going to an Aquafit class at my local pool – great fun and more of a work out than you might think! For me, being in water feels amazing. I have always loved swimming and been confident in the water and have now found it is the only place where I don’t have the constant feeling that I’m about to fall over!

I am working on some exercises at home to improve my balance and have been referred to a scheme at my local gym where I will be allocated a trainer for 3 months. They will help me to plan an exercise programme, help me to access appropriate classes and hopefully gently get me back into moving a bit more.

My weight gain is not just due to lack of activity – know I’ve been comfort eating for a while now – I need to find a way to get on top of that too.

As you all know, I am hoping to have HSCT next year. The treatment is challenging to the body, so I want to get myself in the best shape I can, as I feel this will improve my chances of coping with treatment and having a smooth recovery.

On a positive note, my blood pressure is “perfect”!

14 STAR

Today I had a visit from an occupational therapist and a physiotherapist from my local Team for Adult Rehabilitation (STAR). What amazing people they were – so thorough, kind and helpful.

They advised me on walking stick height, exercise to improve balance, welfare rights, work life balance, issues with parking at work, slippers(!!), fatigue, vision and the importance of staying active. They are arranging for a hand rail to be fitted in my bathroom and have given me advice on walking up and down stairs. They were sympathetic and supportive when I became a little tearful.

I am keen to improve my general level of fitness (and to lose some weight) and am to be referred to a supported scheme at my local gym (funded by the NHS). I am also being referred for counselling.

I am amazed at the level of support available to me and feel so grateful that I live in a country that provides this safety net for people experiencing difficulties (I know we don’t always get this right for everyone). I struggle so much with asking for help but they totally understood that feeling. They encouraged me to make decisions for myself on my next steps and reassured me that accepting help enhances my independence, rather than reducing it.

Losing my independence is the thing I fear the most and they were able to help me to see that I can use this feeling in a positive way, to give me the determination to keep living my best life!

10 Am I yoga-ing now?

Today I went to my first ever MS yoga class …well, to be truthful, it was my first ever yoga class full stop!

What a lovely bunch of friendly people I met. The instructor adapted the stretches and positions for “floor people” and “chair people” so every one could join in, and we all stayed for a picnic lunch afterwards.

A very enjoyable morning and I also learnt some moves I can try at home. Hopefully I can get to another class in the not too distant future. I also plan to try MS Pilates (who knew there was such a thing?!)