Countdown to Hamburg

Sas Freeman

March 28, 2016

DIA

I hope as I type this you are all enjoying your Easter Monday. I am now on countdown until I travel to Hamburg where I am speaking at the DIA conference on April 7th between 2:00PM – 3:30PM (Central European Standard Time).

This DIA 28th Annual EuroMeeting brings healthcare stakeholders together to collaborate on when, where and how innovation leads to advances in health care product development. – See more at:

            ▶ EuroMeeting 2016

The session I am involved in, looks at how digital technology is transforming healthcare. I will begin with the patient perspective and share my story as a stroke survivor and talk about the role of social media/digital in my life.

At the end I will be challenging the panelists and audience to think about how such technology can be harnessed to better support patients. The challenge will be around how healthcare providers could offer stroke survivors a more personal and effective stroke recovery experience, freeing up resources that could be used elsewhere and what that future could look like.

There will be an opportunity for questions at the end and there is also live Twitter feed so please support me and put this date in your diary along with the time and join me and everyone involved. I will let you all have the Twitter feed address as soon as I have it.

Don’t get me wrong, I am enjoying my Easter weekend, but this is also very much on my mind as it is so very eggciting, excuse the pun, but it is Easter after all.

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Countdown to Hamburg

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50 Shades of Possible Changes

Sas Freeman

March 20, 2016

Wheel Chair

The changes to welfare payments over the next four years announced by the Chancellor last week means that over half a million disabled people could sadly lose out. The Government claiming it would be fairer, but charities question this.

After George Osborne announced this cut to the Personal Independent Payment (PIP) from these already vulnerable people, a significant number of Conservative MP’, recognising the drastic effects on thousands of people’s lives, warned him that they were ready to throw out his plans. They have written a letter to the Chancellor requesting he rethinks his plans.  Iain Duncan Smith resigned as work and pensions secretary, denouncing £4bn of planned cuts to disability benefits as “indefensible”.

If these changes are forced in, it could in real terms, leave disabled people, who need extra assistance, £3,500 a year worse off whilst the cost of the paid care they need remains the same.

50 Shades of Stroke – Aphasia

Sas Freeman

March 15, 2015

Another complication stroke survivor’s are faced with is Aphasia. This is a terribly frustrating complication, we can hear conversations as before, know how we would wish to respond or join in, yet we are unable to participate, the words we would like to say just wont come out. People often then begin to do one of two things they believe will help, yet truly they don’t. They talk to us in baby speak as if we have rewound our intellect back to toddler days; or they speak or answer questions for us by guessing what we are attempting to say. Don’t get me wrong , I’m not blaming them, none of us know how to handle the situation. Its just that although we appear to be displaying difficulty and are slow, we wish to get there unaided and finally get the words out. We can use pictures to illustrate things we are trying to say and help conversation this way.

5o-shades

One way to help improve the situation is music and singing. Somehow when we try to sing we tap into a different part of the brain plus we relax and we are able to participate in song. Yet when attempting simple sentences of normal speech, we concentrate so hard, it’s almost as though the breaks go on and speech becomes impossible.

One thing that helps me when I am having difficulty communicating with someone new is to focus with my eyes on something else other than who I am talking to.  I apologise and explain that I am not being rude but need to use the focus to concentrate on my response,  it works.

Music, song, practice, patience and self belief #50shadesofaphasia

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50 Shades of Stroke – Aphasia

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50 Shades of 50!

Sas Freeman

March 13, 2016

Firstly I would like to apologise for my silence over the last few weeks but I was unwell again. To begin with I had been admitted to hospital with a mini stroke but whilst in contracted some horrid flu type illness, to be honest I am not totally sure what it was. No one was able to visit, only a few staff were allowed to enter and only if they were wearing protective gear including face-masks. When I eventually left the room had to be fumigated and left for four hours before anyone was allowed in?! Anyway here I am back again.

18881-atrial-fibrillation-p1

I am not sure if during the week you noticed in the papers reports about studies carried out on behalf of the Stroke Association. They were looking again at stroke in working age people and if they could be prevented if awareness was raised. Those of you who know me already know this is something I feel passionate about which is why I am donating money from the sales of my book and doing talks.

Findings show that still many people are completely unaware of the condition called AF, the abbreviation for Atrial Fibrillation. This is commonly known as an irregular heart beat. It is often unknown in a person and yet is the cause for approximately twenty per cent of all strokes in the UK. This condition is so easily treated once detected and then the risk of having a stroke is reduced by sixty seven per cent, this is why raising awareness is vital. We could start today if after reading my blog you took a photo of it and sent it to five or ten friends via whichever social media you prefer then you ask each of them to do the same and so on. Think of how much more awareness we could have collectively raised as a result of one blog and a few minutes of your time, if you will please help me. If also anyone wishes to purchase my book to learn more, it isn’t a heavy read, you do not have to have had a stroke or know anyone who has experienced a stroke to get something from it I am informed, then also awareness is rising again yet further and the extra money raised for the cause.

50 Shades of Stroke – Aphasia

Sas Freeman

March 15, 2015

Another complication stroke survivor’s are faced with is Aphasia. This is a terribly frustrating complication, we can hear conversations as before, know how we would wish to respond or join in, yet we are unable to participate, the words we would like to say just wont come out. People often then begin to do one of two things they believe will help, yet truly they don’t. They talk to us in baby speak as if we have rewound our intellect back to toddler days; or they speak or answer questions for us by guessing what we are attempting to say. Don’t get me wrong , I’m not blaming them, none of us know how to handle the situation. Its just that although we appear to be displaying difficulty and are slow, we wish to get there unaided and finally get the words out. We can use pictures to illustrate things we are trying to say and help conversation this way.

50-shades

One way to help improve the situation is music and singing. Somehow when we try to sing we tap into a different part of the brain plus we relax and we are able to participate in song. Yet when attempting simple sentences of normal speech, we concentrate so hard, it’s almost as though the breaks go on and speech becomes impossible.

One thing that helps me when I am having difficulty communicating with someone new is to focus with my eyes on something else other than who I am talking to.  I apologise and explain that I am not being rude but need to use the focus to concentrate on my response,  it works.

Music, song, practice, patience and self belief #50shadesofaphasia

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50 Shades of Stroke – Aphasia

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Food for Thought

Sas Freeman

February 14, 2016

Purple Roes

To everyone out there who kindly reads my blogs, and especially all the stroke survivors amongst you, I wish you a happy valentines day and hope that the image of these delicate flowers, and their fabulous colour gives you the feeling of inspiration, hope and recovery. Remember to always believe in continuing recovery, even when it becomes slower. As if that image were not warming and encouraging enough, it is accompanied by the clever words of a friend Alan, and fellow stroke survivor. Please just click on the link below to open the pdf. I hope you enjoy his work and I wish you all, once again a happy, healthy valentines day.

Food for Thought _ Purple Roses

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Food for Thought

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50 Shades of Tips

Sas Freeman

February 8, 2016

Mirror Box

This weeks blog was prompted by a Twitter conversation with @Rutlandmum blog, discussing our attempts at physio and how professionals often concentrate on one area, which is good, but in our daily lives we can be left feeling as if progress is halting and this in turn leaves us feeling upset, even depressed at times. The situation we are in now means daily life is a mini battle and we have to hide that from the outside world behind false smiles. So we need to make, or at least feel we are making, some progress.

I have promised some tips, which are based on my experience and are tried and tested, and form the basis of my book, ‘Two Strokes Not Out’. These are not from a medical professional, although some are taken from or adaptations of recommended ones. Rather than only having an exercise plan, I try to build small habits into daily life; these may sound like nothing on first reading but if you think about how many times you repeat them throughout a day, then you will begin to see their value.

Am I There Yet?!?

Sas Freeman

August 5, 2014

Naively I went into this with my eyes tightly closed. It is now four years since my first stroke and the intention was to get my book written and published to help fellow survivors and their families. And it isn’t yet, quite on the shelves.

Despite my difficulties learning to read again, following stroke and having to limit the time I am able to look at a computer screen. The writing was somehow easy, possibly because of the passion involved, the desire to help others and hopefully prevent them making the same mistakes by learning from mine.

Sas Front Cover2

This has been written for nearly three years, the difficulty for me, new to this world has been finding an editor, having done that, the cover design and finally getting published which as I type this, still hasn’t happened.

Addressing each of these issues one by one, I eventually found an editor in the states. Why I couldn’t find one closer to home, I have no idea but delighted to have found one and a good one too, who also agreed to take me on. I didn’t question further.

I was suddenly on cloud nine, not realising at this stage how far away I still was from being published. I had yet another excitement to come when told by my editor, it was so well written it wasn’t going to cost as much as initially quoted as it wouldn’t need so much editing.

In my mind, this meant I would be published within a few months, this incidentally could be twelve months ago. I lose track now of what happened when. Excitement builds as we reach the final edit. I hadn’t taken into account despite all the track changes made and returned somehow between the UK & the States the different software reverted words back from British to American spelling and language and visa versa.

Excitement as Feedback Begins

Sas Freeman

October 21, 2014

Box of books

It is now a week since my book, ‘Two Strokes Not Out’ has been in print and although I was slightly concerned at how few people know about it, the feedback I am beginning to receive following the sales so far, reminds me exactly why I wrote it. I couldn’t ask for more.

Feedback and response received from fellow survivors, carers, family members of stroke survivors and from people not directly touched by stroke and I hope will not be.

Each individual response has been both powerful and emotional, thanking me for highlighting and/or identifying with issues that have otherwise gone unnoticed, especially for the carers and other family members. I touch on the fact that as a Stroke Survivor, we are regularly asked “how are we” yet the carer is rarely asked that question and expected to simply deal with their emotions along with everything else’s and all that is asked of them.

It was rewarding to hear the book has helped people in different ways with different aspects so again not only one area of help or one group of people.

I can now concentrate in promoting it in the knowledge it will help as I had intended and hoped. Also by selling copies I can create greater public awareness of people at risk of certain types of stroke, those that can be prevented by making certain changes, therefore preventing more people ending up as I have.

It can do its work in many ways and hopefully, once read, it can be passed onto someone else to help them and their family too.

Please consider buying a copy to help me to help others. Thank you.

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Excitement as Feedback Begins

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50 Shades of Communication

Sas Freeman

February 2, 2016

As a result of the Post Concussion Syndrome I needed to return to my doctor’s surgery, and the waiting room was rather full. As the chair next to me became free, a young chap sat in it and the first thing I noticed was how lovely he was smiling. Shortly afterwards he apologised to me for smiling at me when he didn’t know me, I replied it was lovely and added if more of us smiled more often what a friendlier place it would be, smiles after all are contagious. Just prior to this, apart from the classical music in the background, the waiting room had been silent yet as we spoke a lady close to us joined in and shortly afterwards another lady too. Then when someone I knew entered the room a different lady offered to exchange seats so we could chat to one another, yet a conversation continued around us, all because of a smile.

photo

It doesn’t cost anything to smile so if this can begin in a short space of time in this environment, think what a difference we could all make if we tried to make it a habit. Promise ourselves that we won’t care what others may think of us but we will smile at least at one person we don’t know, next time we go out. If they don’t smile back, it doesn’t matter we do not know what may be going on in their lives, but that smile gifted upon them may just have made their day and at the very least they will have felt good from seeing and receiving a smile. We can then make that a habit, which apparently we only need to repeat for twenty-eight days to make it become a habit. This would make the person receiving, possibly without even realising smile back and a third person would see that and so it goes on. As the saying goes: smile and the world smiles with you.

I came away from the doctors with this still in mind, so much so I discussed it and I’ve written this; so why don’t we all for the next week at least put it into practice, and see how we feel. I would be shocked if anyone said they didn’t feel better and lifted themselves by this simple, effortless and free action. Think also while you are smiling it takes fewer muscles to smile than it does to frown and therefore we are creating fewer wrinkles at the same time! Win, win don’t you agree?

So, are you going to smile with me and see how we get on?

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50 Shades of Communication

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50 Shades of Safety

Sas Freeman

January 26, 2016

I found myself in a situation of having to dismantle our grandfather clock, and as you may know already my difficulties following stroke you can appreciate my apprehension. Nick began by carefully removing the glass outer case, revealing the brass face and workings. At this point I bent next to the clock to retrieve something when I stumbled falling towards the clock, and before I knew it, the heavy brass face and workings had fallen from height hitting the side of my head, my glasses saving a little but blood still streaming down my neck. My head throbbing, I instantly fell but fortunately into a chair by side. I appeared stunned as couldn’t move at all in anyway for what felt like several minutes but in reality I am not sure how long it lasted.

Clock

I had a piercing pain inside my head and it felt as though somehow it was bleeding, even though that sounds strange. This feeling did not really go away so despite trying to carry on and continue with things I appeared to be getting worse, and the head pain became yet more intense, painkillers not able to relieve it in any way. I decided to make an appointment with my doctor who feared it might be a bleed and sent me directly to hospital for a scan. She phoned ahead so that they were expecting me.

The triage nurse was not so helpful because as soon as I told her truthfully, that the injury had not occurred that day her attitude changed towards me, and she told me I would have to wait my turn at the back with everyone else. I explained my doctor had already spoken to someone and I was expected for a scan, however she was clearly not in a listening frame of mind.

When I was seen the doctor was totally different, I was not allowed anywhere on my own or to even walk in case it was a bleed. Despite the scan showing a lot of damage to the brain as a result of my strokes, fortunately there were no signs of a bleed.. They say I have tissue damage and bad concussion so must take painkillers regularly, keep fluids up and rest as it could take a while to recover. Concussion takes longer for someone with previous brain injury to recover from than it does for anyone else. Something else for us to bear in mind.

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50 Shades of Safety

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50 Shades of Emotional Differences

Sas Freeman

January 19, 2016

We have moved home and as if that was not enough of an upheaval, our new home is still resembling a building site. It had to have work done to accommodate my requirements. I will finally be able to have a shower, I will be able to do more in the kitchen as I can reach more things etc, this said this was all meant to be finished in October, then end of October, beginning of November and so on. We are now into another year and still so much not finished, walls to paint, without a washing machine, basins, shower, flooring lighting in some rooms you get the picture.

photo

I had organised the removal company and the move was taking place.

My friend drove me to our new home and the removal men had chosen to ignore the drive and park on the lawn right outside the front door. I admit the lawn has suffered the past months having drains redirected and materials on at times but lorries were a first.

As I walked into the house, builders, electrician someone installing a phone, and so it went on, furniture being delivered too. Luke, the builder, turned to me and said “you must be so stressed.” It was only at that point it dawned on me somehow, it could only be as a result of stroke I was not. I didn’t feel any emotion other than exhaustion.

50 Shades of Lime

Sas Freeman

January 5, 2016

Ways of Immune Boosting

During the winter months especially, and for those of us not able to exercise as much as others, boosting our immune system is more important than ever.

One way we can do this is to increase our intake of fresh fruit and vegetables. Particularly foods rich in vitamin C and antioxidants help boost the immune system and help fight off flu & colds.

Lime

We can also rethink some of our regular daily drinks, instead of always reaching for tea or coffee try adding lemon or lime juice to hot water each day for one or two drinks at least.

Another thing we can do is increase our iron absorbency. Iron deficiency is one of the greatest reasons for anaemia in developed countries. Combining foods rich in vitamin C with foods rich in iron increases the bodies absorption of iron. This can be done so simply for example squeeze lemon juice on a salad with spinach or chickpeas, both rich in iron. Lime juice also has antibacterial qualities. Vitamin C also helps people with asthma, it assists in preventing asthma.

‘Not Just for a Month’

Sas Freeman

June 2, 2014

The Stroke Awareness month of May 2014 has drawn to a close for another year, but our contact with the general public with messages creating greater awareness of stroke should continue to be broadcast and shared.

The message of what stroke is, how it can be prevented and the changes people can make to their lifestyles should be kept alive. Why should it sit on the back burner for 11 months?

I believe if greater awareness continues and the general public make small changes to their life styles, the long-term result would be fewer strokes. The knock on effect would be fewer families’ lives being turned upside down overnight from being hit by the devastation of stroke.

The realisation that the survivor may, as a result no longer be able to work, when they still long to, no longer able to be the parent they have been and still long to be. Instead of the stroke survivor looking after the family, the family now has to look after the survivor or become carers.

Outside the family unit, stroke drains resources within the NHS, increases the cost of benefits, removes skilled people from the workforce, the list continues.

What this month has highlighted to me is how Stroke Survivors are incredibly passionate about getting messages ‘out there’ to try to prevent further strokes where at all possible.

The mission and desire must be to help prevent families having to experience what we and our families have and acting quickly when someone has a TIA would be a great start. Helping each other deal with the many challenges we are presented with following stroke, particularly, sadly the silent and emotional ones which are often the most difficult to address, especially for survivors without paralysis. Those survivors who have no visual signs of disability and whose appearance is very much as it always was, often have the most pressure to behave and carry out tasks as normal. As a fellow survivor I know that this is impossible and upsetting.

50 Shades of Chocolate – The Sequel

Sas Freeman

December 21, 2015

I have mentioned before the benefits of chocolate and about enjoying your chocolate over the festive period without feeling guilty, but there is yet more good news related to cocoa.

I may have mentioned previously that since my stroke I often now have a kidney infection on my one side, my less strong side. I had never had infections before. I also now have to take both beta and alpha blockers.

The reason for mentioning the above is that both the heart and kidneys are major organs, and if one stops functioning properly the other will be affected.

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If the heart stops pumping correctly it becomes congested with blood and pressure will build up. This can cause a congestion of blood in the kidneys and a lack of oxygenated blood.

Conversely, if the kidneys stop functioning correctly due to damage, the hormone system that regulates blood pressure goes into overdrive to get blood to the kidneys putting extra pressure onto the heart. The heart can become damaged by the extra workload.

50 Shades of Naughty Foods

Sas Freeman

December 13, 2015

photo

If you are like me, you like chocolate and don’t need an excuse to eat it. But there is good news for all you chocolate lovers out there. It has been discovered from a study that tracks the impact of diet on long term health of 25,000 men and woman that is highly beneficial. It was suggested they eat up to 100g of chocolate each day and findings identified that it was linked to reducing the risk s of heart disease and stroke.

Dark chocolate has long been identified for its antioxidants and their benefits protecting against certain conditions; one study published last year claimed eating it regularly can prevent obesity and diabetes. Even that eating regularly, in moderation, can be beneficial for the heart. But it has been only more recently identified that milk chocolate has benefits too.

So my message here is don’t obviously go mad but equally don’t feel guilty. Listen to your body and enjoy what you really feel like having. Moderation remains key.

We can spread this goodness and take it a step further taking advantage of the time of year. As stroke survivors, having our daily difficulties, many of us know only too well what it is like not to be able to get out, to get to shops unless someone kindly offers to take us.

Take this further people and think of people in different situations; those on their own, struggling with health or perhaps financially. You don’t have to know who they are, just be aware of their existence. Buy some chocolates and wrap them, and it could be lovely to receive. Put it in a bag, knock the door, then leave before you can be seen, you could even include a card a Christmas wish from someone hoping to spread Christmas cheer? Do what is right for you. Return home enjoy your chocolate whilst looking after your heart, knowing you have warmed someone else’s’ too.

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50 Shades of Naughty Foods

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50 Shades of Surprise

Sas Freeman

December 7, 2015

Power of surprises

It was the morning after my birthday, and several things had to be done. Each on my list of equal importance so none could be ignored or put off.

I would much rather be reflecting on the previous day: my lovely messages, gifts and visits from friends.

photo

I suddenly felt really flat and deflated but not for long! On getting downstairs I was greeted by my son,  Henry and his girlfriend, Beth at the bottom of the stairs smiling and saying ‘surprise’. The kitchen decorated with balloons, the most fabulous selection of cupcakes on the table a present, wonderful words in my card and we had birthday round two. We enjoyed our meal with prosecco and cupcakes, to follow. We had the day together and enjoyed a wonderful supper at our favourite place. All of this a total surprise. The fact they had travelled back from university to surprise me means so very much, a memory I shall cherish for many years to come.

Actions, acts of kindness as displayed, have the power to turn a day around and they do exactly that. Thanks Henry and Beth.

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50 Shades of Surprise

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50 Shades of the Power of Words

Sas Freeman

November 29, 2015

I am currently still trying to fight pericarditis and feeling unwell. I opened a message to receive a special gift a very clever poem. It’s words so kind whilst reading it brought tears to my eyes. It is so special to me and such a clever poem I feel the need to use it as my blog this week and share it with you all.

It means so much to me and helped me feel so much better emotionally due to it’s kindness, the thought and time taken to write such a special gift. Something I will cherish. I am going to have it framed and next to my desk.

Poem

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50 Shades of the Power of Words

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Blog by Nick

November 22, 2015

Sunday

My partner, Sas, has not been very well this week and send her apologise that she will not be blogging this week. The Doctor believes that it is possible the return of the Pericarditis that affected her in 2014 and a lot of this year.

Sas has asked me to pass on her best wishes to all her friends and followers on twitter and through her blog, and assures them that she will be back soon.

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50 Shades of Rest

Sas Freeman

November 15, 2015

Friends

This week my body has ensured I listen and look after it and friends have helped me do so. Monday was particularly busy and as a result my health deteriorated further as a result I am still struggling fighting pain in my chest: the feeling I recognise only too well that could so easily be the start of that slippery road before pericarditis, which I have had the last two winters. Also, the nagging pain in a small area in the left side of my head, so Tuesday things changed. I began to behave, and each day since then I have slowed down, tackled my paperwork in bite size chunks each day and remained in the warm, unless I have kindly been visited by friends and we have gone out for a lovely lunch. I haven’t felt able to do exercise this week but I have slept in the afternoon where possible and actually achieved quite a few of the most pressing deadlines, yet rested too.