Kick up the backside

I had a minor Lacunar Infarct 5 months ago at the age of 66 and had done over 4000 miles on a bike in 2018 and over 2000 by August 2019 when I had my stroke

I had one really bad night in hospital feeling round down in hospital. 

I decided from then to accept that it was too late to do anything about having a stroke and to rely on the medical experts with the new tablets to have another and would focus on my recovery

In discussions with my hospital physio - who was excellent- that there would be a gap - it was 8 days - between hospital discharge and seeing the community physio. 

So I asked her to video some exercises on my phone so I could do them as soon as home. 

I also used to do what I could whilst in my hospital chair - I tried to follow a normal routine so got changed into days clothes after breakfast and stayed out of bed until bed time - for example I could not wiggle my toes on my right foot so used to “ work” them with my hands in the hope that my brain would learn what I wanted to do. 

5 months on I am back on my bike having done 89 miles so far in January (15th) 

As a keen cyclist I am used to pushing myself but without doubt this recovery is the hardest thing I have done. 

I have to schedule what I do and only exercise alternate days and will sleep in on non exercise days as fatigue can still be an issue ( in a way I am used to it as my career was ridiculously long hours) 

i consider myself lucky - for example to have the time as a retiree to have time to focus on myself - and wish everyone good luck in their individual recovery. 

Dear Brian

Sorry to learn of the stroke that bit you but welcome to our forum.

You appear to be that rare SS who has made a fast substantial recovery and perhaps many of us could learn from your success.

Not sure that you had a "minor" stroke. I dont think that some days in hospital plus 5 months for partial recovery is "minor". I think you have had a major incident from which you are doing rather well with recovery.

You were quite right to accept that you had a stroke. This is an issue with many who dont accept that a stroke got them. Stroking usually lasts hours or even minutes then its recovery time, just as you found. I too worked away from my hospital bed, and the physio had suggested wiggling everything. So wiggle I did ! 

I too have cycled around the country, although I left cycling behind when children came along. At about your stage post stroke , eg six months, I got on a bicycle and promptly fell off. Didnt move forward at all. My legs were too weak and my co ordination non existent. The required balancing sent my brain in to melt down.So I ditched cycling and concentrated on walking, which came quite easily for me.

I am interested in your approach to tiredness. I assume your daignosis included the gross understatement of "post stroke tiredness" and that you easily get fatigued, or SF as I call it. Do you find that SF is reduced after a good nights sleep ? And that SF rages when you dont get a good nights sleep ?

Your method of alternating sleep is a good idea and I think I will try that. For years I simply found that a bad night on Wednesday caused massive SF on thursday and bad SF on friday, so your alternating interests me a lot.

I too am retired And I too schedule what I have to do. My memory is hopelessly variable.

Nice to hear a success story to inspire the rest of us

Colin

Thank you for your advice. These strokes have a lot to answer for.

Dear Zoe

I have the diagnosis "post stroke tiredness". but its not tired its fatigue or exhaustion and I call it SF.

I have had considerable success in reducing the effect of SF by:

Getting up and dressed each day. Then washing etc, eating breakast and making my bed. I then sit in a quiet place and rest for 30 minutes. It doesnt stop SF but I find its more manageable with this break. In the first two years I had to rest after just 45 minutes activity.

I wonder if Mum can differentiate between being sleepy tired as opposed to SF tired. If I sleep during the day due to SF then those naps are just wonderful. No dreams, just a peaceful nap, typically 20 minutes then I awake fresh, none of the negative effects of a sleepy daytime nap.

For me (and we are all different, no two strokes are the same) I have to get proper night time sleep. Its 7.5 hours for me. If I dont get good sleep then the SF runs riot the next day and the day after that.

Anxiety is a separate matter even though the anxiety seems to increase when the SF comes on. Anxiety is very common for us. I go to relaxation classes, a great help. I also use a £30 box called a tinnitus relaxer. It plays white noise plus a choice of soothing sounds such as waves. It is good for relaxing and also good for getting me to sleep. It has a 30 minute timer so it switches off without me needing to wake.

If mum is genuinely anxious over a specific, such as fear of another stroke, then counselling is good. We really need a counsellor who is trained on strokes. 

Please remember that its only Mum that can make Mum better. Your wonderful support is helpfull but you cant mend Mum, she has to do that herself.

And of course she needs to smile several times a day (amazingly effective).

And be positive. Think in terms of what she can do as opposed to what she can not.

And she should accept that she is special, she lived through a stroke when many do not survive. 

Best wishes

Colin

Thank you for your lovely words. Injust read it all to mum and she was agreeing with everything you said. 

Thanks again.

I can't really explain as well as you have but I'm 5 months down the road and thought I was getting used to my new normal- bam the fatigue has hit again but this time I can't seem to switch off - almost like I've gone too far . I'm trying to stay positive but feel very emotional and keep crying for what feels like no reason .

Stroke does donate to most of us the emotionality issue. Mostly crying, but a very few SS laugh when not appropriate.

For us males it is extra hard because we dont cry do we ? 

Please stay positive and just let the tears go as this could be part of the healing process.

Some form of meditation helps a lot. I use a tinnitus relaxer but any relaxation techniques will help. Easier said than done, but once you break rthe circle then good things follow. 

Colin

It's 18 months since my stroke which seriously affected my right side. My stubborn determination had me back at school 2.5 months later in a very part-time role. A year later, being back at school at the beginning of the academic year, full time, I wasted so much energy being angry about trivial things over which I had no control. I have always loved my job and am determined to rediscover my positivity. The stroke definitely affected my emotions and they are still not totally under control- getting better though! I had my stroke, aged 52, on my 28th wedding anniversary. By my 30th anniversary, which we will be celebrating in Mauritius, I am determined to be able to run along the shoreline each morning, to cycle and go quad biking! I managed to dash across the road last week, so am feeling ready to run when the weather improves ??

I am 69 years old & of Indian ethinicity, & althought I have never had a Stroke, I was diagnosed with Carotid Artery Disease (CAD) in Feb 2018. This increases my risk of having a Stroke. Since Feb 2018, I have lost 2 Stone in weight (88 kg to 70 kg), doubled my exercises to 2 hours daily (both Cardio & Weights + Yoga) & moved to a vegetarian diet. My latest Carotid Doppler Test shows that the offending plaque blockage has reduced 20% in lenght, & the blood velocity at the blockage site has increased by 15%. With this encouragement, I am trying to lose more weight to get to a BMI of 22.5 (which is recomended for Indian ethinicity males over 60). I would be interested to hear from any other members who are trying to reduce their risk of getting a Stroke. 

Congratulations on losing so much weight and the good news about the plaque blockage. I've already had a stroke 2 yrs ago but thought this may interest you.

 I also go to the gym twice a week now and lift weights as I used to prior stroke. I'm not vegetarian but eat very little red meat. My cholestrol was 6.9 at the last test in Nov last yr. I can't take statins because I'm allergic to them but I have had good results previously with drinking Benecol drink each day. I tried it prior to stroke and got my cholestrol down from 8.2 to 6 when I had my stroke. 

In addition to this, my personal trainer suggested I try milled golden flaxseed which is high in protein, fibre and omega 3 fatty acids which help to reduce cholestrol.  I use Yum & Yay which you can get from the supermarket and sprinkle 2 desert spoons on my cereal every morning. It is virtually tasteless so won't overpower any fruit or nuts that you put on your cereal or porridge. You can also sprinkle it in soup and salads too.  It will be interesting to see what results I get at my next cholestrol test in April! 

That's a very impressive commitment to risk reduction ?  and you've clearly noticed good results.

Keep up the great work, wishing you health and happiness ?

Hi Michelle, welcome to the club! With having no effect's nobody will be able to see what goes on in your mind but hang in there because you won't give up! I am 6.5 years after my stroke and went back to work after 12mths which with hindsight was too early. Took me 5yrs to sort myself mentally and physically but have still been to a phycologist through a doctor. Headway are very good at support and I still go. You will learn a awful lot! Chin up ? Paul. 

It is so nice to have a newish contributor who is many years down the recovery journey. You have such a lot of knowledge that will help many of us. Just hearing that 5 years and you sorted yourself to some degree is reassuring.

And I am always suggesting that return to work should be delayed so its nice to hear you confirm this.

Thanks Paul

Colin

Thank you to everyone for replying to my post. Im sorry for not being able to reply to you all but have been suffering with my fatigue and no energy to read and when I have, I have been having issues accessing the site fully. 
 

the support and advice given in this site is amazing. It's my only true sanctuary as nobody truly understands what it's like. 
 

I shall post again in a couple of days to update on my progress as I'm trying to process it all at the moment (things not great) and know where I am at. 
 

M x

Give yourself plenty of rest, your brain and body are clealy needing this right now, some things you can fight, but you just need to listen to your body and give it the time to heal.  Rest, rest and more rest!!!

Good luck xx

Give yourself plenty of rest, your brain and body are clealy needing this right now, some things you can fight, but you just need to listen to your body and give it the time to heal.  Rest, rest and more rest!!!

Good luck xx

Never give up no matter what! ?

Thank you for your encouraging comments.

For the last 3 weeks I have been experimenting with Intermittent Fasting (IF). I've settled on a feeding window of 4 hours with fasting for 20 hours (20/4), 5-6 days a week. I started with 12/12 & gradually worked my way forward to 22/2, which I was unable to sustain. However I am very comfortable with 20/4. My Neurologist has no objections. I have found no lack of energy as I am continuing with my exercise regime & my Systolic BP has decreased by 10 points to 111. Diastolic BP is unchanged. 

I was very surprised that the scientifically proved medical benefits of IF, particularly Autophagy. YouTube has various short clips on IF & Autophagy, in case you are interested. The best one is 'What Happens to Your Body When You Fast - Hour by Hour Breakdown'. Of course both the food industry & the Pharma industry don't want to research the positive physical effects of Fasting as there's no money in it for them. 

Incidentally, have you seen 'The Game Changers'? it's an original Netflix film which is now on YouTube. After seeing it thrice I have recently given up eating all animal products. Although I was mainly vegeterian, I used to eat eggs, natural yogurt & put milk in my tea. I have given up eggs & yogurt & now used soya milk in tea. 

Have you heard about IF/Autophagy &/or seen 'The Game Changers'?

Thank you for your encouraging comments.

For the last 3 weeks I have been experimenting with Intermittent Fasting (IF). I've settled on a feeding window of 4 hours with fasting for 20 hours (20/4), 5-6 days a week. I started with 12/12 & gradually worked my way forward to 22/2, which I was unable to sustain. However I am very comfortable with 20/4. My Neurologist has no objections. I have found no lack of energy as I am continuing with my exercise regime & my Systolic BP has decreased by 10 points to 111. Diastolic BP is unchanged. 

I was very surprised that the scientifically proved medical benefits of IF, particularly Autophagy. YouTube has various short clips on IF & Autophagy, in case you are interested. The best one is 'What Happens to Your Body When You Fast - Hour by Hour Breakdown'. Of course both the food industry & the Pharma industry don't want to research the positive physical effects of Fasting as there's no money in it for them. 

Incidentally, have you seen 'The Game Changers'? it's an original Netflix film which is now on YouTube. After seeing it thrice I have recently given up eating all animal products. Although I was mainly vegeterian, I used to eat eggs, natural yogurt & put milk in my tea. I have given up eggs & yogurt & now used soya milk in tea. 

Have you heard about IF/Autophagy &/or seen 'The Game Changers'?

Colin 

Sorry  for the delay in replying- I am new to this site. 
I appreciate your comments about me having a major stroke - I think that I have come to accept that this is the case. 
Like you much of my exercise is now walking with a maximum of just over 2 miles. I am going to try a short ( c15 miles) ride tomorrow with a good friend of mine and it will be interesting to see how I get on. 
Tiredness/ fatigue is still my biggest issue - I take melatonin about 1 hour before settling down to sleep and it certainly works as I am straight out - I do however still feel rubbish the next day but it tends to go as the day progresses and I try to push through it but do have a c45minute sleep most afternoons. 
It's 7 months since my stroke and I am still waiting for my GP to review my medications as I feel I am taking too many. 
Good luck with your recovery and take care. 
 

Brian