Brain Stem Stroke- right lateral Medullary Infarction

About stroke
21

@PatAtkins
Hi Pat,

I wish that were true! whilst I have gained a lot of insight into coping with illness you are never prepared wen it happens. I have been through some serious stuff in the last few years and as a result, I find I am more resilient and able to move from shock to recovery maybe a little quicker. The people around you play a massive part in that and I am very lucky to have a good support network of family and friends, but it is still very hard at times.

My husband has been great through all my illnesses, he is very much an ‘it is what it is’ person and is not someone who talks easily about his feelings. I have noticed that he is more quiet at home (his way of processing) and is showing more irritability, so I know he is feeling the effects of my stroke as well. I also find my self easily irritated and frustrated and this has made me snappy on occassions which I hate.

We have been together for nearly 40 years and I have learned over that time that lifes ups and downs can make us behave in ways we normally wouldn’t and that it is important to remember that and when either of us gets reactive to forgive quickly and let it go. (not always easy). He has always been my rock and by my side, he doesn’t always say a lot but his actions speak volumes about his love and care for me, especially when I am grumpy :grinning_face:.

There have been times I have wished he would accept emotional support himself as i know my illnesses take their toll on him, but that is not his way and I have learnt to allow him space to deal with things in his own way.

Some of the things that I feel have helped him, that others may find useful;

  1. Asking someone they enjoy spending time with to come visit. I found asking my husbands brother to come visit helped him. His brother lives over 300 miles away so my husband doesn’t see him as often as he would like. When they get together they are like 2 schoolboys again, laughing and joking and this is the best medicine for my husband.
  2. Walking our dog together in the countryside also often leads to him opening up a bit about how he is feeling.
  3. Doing a simple task together like a jigsaw gives us both space to relax and will often lead to us talking about things.

For myself I have learned that sometimes professional help is the way to go. In the past I have used talk therapy and CBT and would recommend both to anyone struggling as I have had good results with both. This time I feel I need professional help to ovecome my fear of swallowing and choking (this is not a new problem, rather an old one that has come back as a result of my stroke), SALT has got me as far as eating soft foods which is great.

Apologies for my long response :smile: my way of dealing with things is to get them out there either from talking or by writing about them, can you tell!

Lizx

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22

@ManjiB

Thanks for the heads up, no one medical has even mentioned any of this to me and I have been on Amlodopine for over a year and Lisinopril prior to that. I will definately make a point of checking my levels with the GP at my next blood test.

Thanks for the tip about bananas and nuts, I am already eating these daily so hopefully this will help keep my potassium up.

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I don’t know what the forum conventions are, but I find your long posts helpful and interesting!

My other half is also pretty stoical and soo we often don’t talk things through as much as we should - she’s unlikely to go down the professional help route either, I think (nor me, I’m very much of the “bury it deep” persuasion - in my first week in hospital a close friend died, and in the second my father died: I’d rather not open up any emotional boxes just yet!).

But, like you, I discovered how important it is to push my partner to do things with friends she rarely saw as part of “normal” life. If we had a dog, I’d try that too - actually, we used to hike regularly and most of our life planning came about in the hills and in the fresh air.

Thank you for your thoughts, it’s much easier to try to work things out once you’ve got an idea how other people deal with stuff. I certainly feel better when I think this has happened to others and they got through it fine. Also when I think just how lightly I hit off, compared to so many stroke sufferers. I’m grateful for that one every single day, to be honest.

Keep on keeping on.

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24

Hi Lizzie 22 - I am 20 months post stroke and at last the right side of my mouth is 80% back to normal. My speech is a bit sluggish but that’s my fault because I eventually stopped my daily speech exercises. I used the befriending service provided by the stroke association and had several discussions on the phone with a volunteer. This helped tremendously but not my balance which is stiff a bit iffy.
You will improve - it just takes time. Bob3

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@Bob3
Hi Bob, thats great news and I am so glad you have recovered so much, I hope you continue to see improvements. I have been looking at the befriending service and I am glad you found it helpful.

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26

Hi @PatAtkins

I just wanted to pop along and welcome you to the community, I’m sorry to hear about your stroke and the difficulties you have been facing.

It sounds like you’ve done incredibly well with your recovery and I hope you’ll find the Online Community helpful.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

27

Update- Week 9 post stroke.

Hi all,

Just wanted to update on recovery progress and the challenges/worries as a kind of log for anyone else who has or may have this type of stroke.

Progress

I am continuing to see small imrpovements each week. I am now getting some movement on the right side of my face when I smile. This week I noticed that my eyebrow is beginning to twitch when I raise the left one.

My swallowing problems are much improved and I am now able to eat a wider range of foods. I find I now always need a drink with food and have to chew everything really well. I still have some mild anxiety around swallowing, but the session I had with the clinical hypnotherapist really helped and I plan to see her again.

Fatigue has improved and I am starting to learn where my limits are. I know I can only do short periods of physically demanding activities like gardening ( I should say mostly weeding!) or computer work as these seem to tire me very quickly and I have to rest for at least an hour afterwards.

I am lucky in that I retained most of my mobility after my stroke. I have been using the out door gym in the park to strengthen my arms and legs as I lost a lot of muscle in the 3 weeks I was in hospital. I am now able to walk a mile with my dog, which both of us enjoy.

Challenges

The loss of sensation down my left side, I still can’t tell the difference between hot/cold and have recently started to experience long periods of a cold burning sensation and prickling. I feel like I have two bodies mashed together.

My right eye is still a problem as it is not blinking fully and I am having to use drops every hour. Thankfully the eye clinic have been keeping an eye on me (pun not intended Lol!) and tell me the eye itself is healthy, so I am hopeful that this will improve as I get more movement back in that side of my face.

Mobility wasn’t too much of a problem after my stroke, however I do struggle with dizziness which is worse on getting up from laying down and bending. Balance is also a problem when I get tired.

Bowel/bladder problems due to the lack of sensation have left me with night time incontinence and problems with knowing when I need to go. I have also struggled with constipation. Introducing prunes, flax & chia seeds to my morning porridge seem to be helping.

I had to come off my low dose HRT patches because of the increased stroke risk and I am now struggling with mood swings and irritability as a result and my poor husband is having to deal with me like this.

I think the hardest thing to cope with though is the worries and the uncertainty.

Will I be able to manage full time work again, if not how will this impact us financially.
Will I have another stroke.
How much will my symptoms improve.

For now I am taking each day as it comes and trying to focus on acceptance of the way things are and cultivating hope for the future.

Love and hugs to all

Liz

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28

Hi Liz - Thank you so much for sharing this update with us.

It looks like you are making great progress and you should be really pleased.
I am sure your husband understands what you are going through and is able to deal with it - as far as I can tell this is what husbands have to do anyway :slight_smile:

I note you are using an outdoor gym which I think is really great. I wonder if I might make a suggestion. Would you consider walking bare foot on the grass in the park? You may be familiar with earthing as a healing/health aid and I know a few members of this forum swear by it. As you are already out in the park, it would be an easy thing for you to incorporate in your routine. If after trying it, you don’t like it or it doesn’t work for you then stop, but I really think it is an opportunity to try this out.

Wishing you continued success as you recover from your stroke :slight_smile:
:pray:

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Hi ManjiB,
Yes, I have tried earthing and I am also considering earthing sheets for the bed as I have read some good things about using them. I have always been very attracted to the land having grown up on a farm, so being outside in nature is very important to me. I love being in woodlands and pastures and just observing.

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That’s great.

My Mum is the stroke survivor and my reason for being on this forum worked the land in her earlier life and she always padded around the garden bare footed and I never understood why.

She would capture rain water and she would cool her feet in it when they got really hot. I used to tell her this rain water is not the same as in her homeland - it’s “acid rain” but she didn’t mind. To her it was still natural :slight_smile:

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@Lizzie22 Hi Liz, great to read your update & it looks like you have come a long way in 9 weeks. If you continue as you are you’ll be back to it before you know it.

It is good that you are able to manage your fatigue & know your limits. Many struggle with this.

Hopefully your biggest issues will start to improve too over the next few weeks / months.

Best wishes

Ann

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32

Thanks Ann,

Its easy to forget how far you have come after a stroke and it has been useful logging it as it helps to remind you of the progress you have already made.

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33

Good to hear from you, and really good to hear about your progress Lizzie. That seems very positive after 9 weeks, though the less positive stuff probably occupies your mind a bit (I know that’s true for me - sometimes quite trivial symptoms seem to loom large, very frustrating).

Keep on keeping on!

All the very best, Pat

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@PatAtkins
Thanks Pat, you are not wrong but I am working on changing my inner voice to a more positive one.
One day at a time is my motto now.

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35

18 weeks post stroke

An update on progress

Improvements/challenges

Right side facial paralysis is much improved. I can smile again and my mouth is working better which helps with eating. My eye brow now raises a little higher. I still have some stiffness in my jaw. I do facial exercises and massage every day and attribute most of my improvement to them.

Swallowing is still a work in progress, some days are better than others. Stress and fatigue make it worse. I am doing some exercises from the SaLT team to hopefully stengthen this.

Loss of sensory perception on left side is changing weekly. I still cant tell hot from cold and my left side is often colder than my right. Most of the numbness has gone now but I have been left with both an increased sensitivity to touch and pain and an increasingly painful burning sensation in my leg and arm. Currently trying a TENS machine, magnesium and grounding to manage this. Can cope when distracted in the day time but really struggling at night and cant sleep for more than 90 minutes at a time, when I can actually get to sleep! Finding this challenging and lack of sleep exhausting. Trying to see the changes as a positive sign of my brain trying to rewire.

Have delayed my return to work as not ready physically or mentally, this has been harder than I thought it would be to accept and come to terms with.

Mental health has become more challenging in recent weeks. Stroke recovery is exhausting and trying to navigate all the physical aspects, medication side effects, financial considerations etc etc etc. has at times left me feeling very low and helpless. Thankfully I have found a good counsellor through work, who is helping me to work through all this stuff.

In Sept I travelled to Spain on holiday. I found the travelling exhausting and emotionally draining. Anxiety about having another stroke whilst away mainly, but also, would I manage eating and swallowing, statin side effects, fatigue and a badly sprained ankle made the first 72hrs hard. But then I realised I had got there without mishap, there was a great pool to relax and soak my sore ankle in, the apartment was great and I had space to relax and let go.

I am lucky as I have a supportive husband and family, although I feel guilty for having to lean on them so much.

I am learning to accept help when it is offered and to seek it when its needed. Having a stroke is the most challenging thing I have ever had to deal with. Every day I learn something new about its effects, recovery, health, people and about my self.

Currently in the Scottish highlands enjoying the stunning scenery with family. Life goes on, just at a different pace and despite all the challenges I am grateful for each new day and experience. Hope you enjoy the view from the canal locks at Fort Augustus.

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Hi @Lizzie22

What a great update, it sounds like there are lots of positives in there and that you’re doing all the right things with some amazing support around you. Getting back to work is always tough and you’ve done the right thing in delaying that if you’re not feeling ready, as you’ve said it’s not just being physically ready but mentally ready too.

That view is beautiful, I hope you enjoy your holiday :slight_smile:

Anna

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Hi @Lizzie22 great to read your update. It sounds like you are progressing well in many areas.

I think you have made the right call re work. As someone who has returned to work my experience is that it is so much harder than you imagine it will be & you need to be ready before taking that leap.

Great that your work has provided you access to a counsellor & I hope they help you loads.

Keep going you’re doing amazing.

Best wishes

Ann

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Hi Lizzie - Such as wonderful post and so pleased for you.

You should not feel guilty about leaning on family for support - this is what family life is all about. We are there for each other, in good times and better times :slight_smile:

You are “nailing it” as they say - keep it up.

:sports_medal: - in recognition for this as one of the posts of the week for me :slight_smile:

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@ManjiB

Thank you for your kind words, you are right about family :slightly_smiling_face:

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Thanks Ann, @Mrs5K

Its so hard to know when its the right time to go back isn’t it. I too feel I have made the right decision though delaying my return.

I need my mental health to be in a better place before I return to work, I am learning that stress is really not good when it comes to stroke recovery.

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