Telling other people about my aphasia

After my “circulation stroke with expressive difficulties” I am finding it hard to (a) tell people who need to know exactly what it is and (b) convince them it’s not just old age. I have found a good definition for aphasia which I can send people or quote. It’s just (b) that I am finding a bit of a challenge.

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I only had aphasia for a week, now I’m okay with that. However, I am left with plenty of other problems. The only people who could possibly understand are the good folk here, or the local After-Stroke meetings I go to. Friends and family can’t understand why I still can’t walk a year on from my stroke. Isolation and not being understood is a major problem.

Good luck, Roland

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@Bibs @pando

I don’t have that problem to deal with but I’m sure there are cards with a message on, items you can wear and maybe other things that will help to get the message across when you need time and patience from those you are addressing.
I’m sure someone here can point you in the right direction after all its not like they haven’t had to deal with this before.

Pretty sure the Stroke Association has some help and guidance available too.

My apologies if I’m repeating stuff you already know.

Keep on keepin’ on
:writing_hand: :smiley: :+1:

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There is a card Stroke Forum sent me along with a book but my husband can’t use it. he forgets the card is in his phone and almost refuses to go out anywhere due to not being able to know he can communicate and that people will wait for his words to come out. He has been invited to an Aphasia cafe in town but is reluctant to try going. It is nearly 5 years since his 3rd stroke. He cannot read or write. Sometimes he gets close to a good conversation if one to one. If 3-4 people are around at once he cannot cope. I must go now but it is interesting to hear of your zoom. Maybe he would try that. - please let me know. Anne with Colin!

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@AnneC

I’m sure we can sort something out that will suit you.

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It’s not your fault. You’ve been doing everything under the sun to get yourself to walk. I don’t understand why others, even family, can’t get it. I know sometimes my father and I couldn’t understand why my mother acted like she acted. But, we were NOT in her mind. We never had strokes. Nothing was her fault, even though we got angry with her.

You can walk a little bit, right? Don’t give up like my mother did. She really did give up, and she was 80-90% physically recovered, unlike you. Her mind was too far gone. The apathy, OCD, irrational thinking, no attention span, …it was all too much. You have your mind, friend. I see you post every day.

I’ve heard of people who learn to walk at 2-3 years post-stroke. Why can’t that be you?

Mr. Frederickson on here talks about people who took 5-8 years to really make big strides in their strokes. I mean, no one is going back to the way they were before the stroke 100% - I think that is understood. But you can walk again somehow – I just know it.

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Thanks for the email with the zoom details. I will consult and persuade my husband Colin to have a go this coming Fri evening! I’ll be with him to facilitate. - regards Anne. If he doesn’t I will try to contact you back, then.

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@AnneC

Maybe you would prefer a session with just you, me and him for a start to ease into it gently?
We just need to fix a time and day to suit us.
I have something at around 1.00 - 2.30 pm tomorrow but am free otherwise.

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Yes I think so, Matthew

Yes, I can walk around the house, mostly, and every other day I can do 10 minutes of Treadmill or 10 laps of my patio. Everything makes me think I will improve. But recently I had a knock of confidence, and thought my condition may be degenerative, but there’s no proof of that, so I hope to get that evil thought out of my mind.

Having said that it’s not plain sailing… I face big adversity, spasms, locked muscles (which I have now) hopefully tomorrow will be a clear day. I’m listening to our friend Mingtong Gu while I write this, on the light ball. This Qigong is going to get me through this dark period… hopefully!!
Thanks for your post, and putting my mood in check… it is the hardest thing; to have renewed stamina to work myself back into health,

Thank you so much & God bless, Roland

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Frustrating pal and people not being understanding infuriating
Good luck with aphasia!!!
I’m 18 months on pal and still hobbling with a stick and a feeling it’s going to take lot longer to get back to walking properly or if not at all
Hopefully your family become more understanding
Take care :blush::pray:

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You make me smile, Roland.

Mingtong Gu is amazing. He has profound wisdom. I know all about the light ball. Believe in it with all your heart and soul. Things will improve. Mingtong says to always “trust the energy – it alway knows what to do.”

I do qigong every single day. It is my life. I’m a more advanced practitioner now after 2 years of solid practice. There is movement practice, sound healing practice, and meditative practice. Sound healing is particularly helpful with emotional afflictions.

If you have any questions about qigong, please let me know. I’ve been doing it and studying it under Mingtong Gu for 2 years. It soothes my soul in the darkest of times.

Always remember: Haola! Haola! Haola! All is well - getting better!

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Hello Whiteark,

Thank you for your message. I only had aphasia for a week ; luckily there’s no trace of it now. Potentially a lot of questions start building up in my mind about you!
I’ll go with three, but please don’t feel you have to answer:

  1. Did you start off with paralysis on you affected side, and work your way from there?
  2. Have you suffered from loss of sensitivity, proprioception, touch, ability to feel?
  3. Have you had to work through stiffness, spasms, spasticity, or hyper-tone and how is it now?

I don’t blame others for not understanding. I wouldn’t have understood myself before the stroke. I hope your walking really takes-off soon.
All the best, ciao, Roland

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My wife read your message, Matthew

…and said what a nice chap, I need to listen to you. And I do !
I definitely think Mingtong is the way to go.
I am especially curious to deepen my understanding of “trust the energy”
There is energy within me, I just need to focus it optimally.
I’m curious on what drove you to follow Qigong, and what motivated you to follow stroke survivors on the forum?

ciao, Roland

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@Bibs you can get a sunflower lanyard which you can wear when out and about so others know you have a hidden disability. You can get a card to suit your circumstances & also write on the back what your isdues are.

I think you can get them from places like Tescos free of charge but you can also order them from the site below.

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All - radar keys!!

K :polar_bear: :wink:

https://www.google.com/search?q=radar+key+uk&rlz=1CAKWCM_enGB975GB975&oq=radar+&aqs=chrome.2.69i57j0i433i512j0i20i263i512j0i512j0i131i433i512j69i60l3.3003j0j9&sourceid=chrome&ie=UTF-8

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I attend my local Aphasia group once a month. My first day there I didn’t have to say anything and it wasn’t expected of either. I’d laid the ground work in emails explaining my condition to the group leader and she was very understanding and that was not at all unusual for her. I went alone but many have their carers with them, and you can say as much or as little as you are comfortable with. Over time, as you get more used to and familiar with the group, the more you find yourself participating and conversing…however that may come out. I’ve never met anyone who could say so much and express himself in so many different ways with just the use of three small sounds baa, baa, baa :smile: His wife comes with him and he also has a tablet/ipad…though I’ve never seen him use it to communicate, more to assist his jokes :laughing: We may have lost our words, but our personalities still shine through :blush:

On my first day, I got there early so the room hadn’t filled up and I sat in such a position that I found myself surrounded and hemmed in when the room filled up. I didn’t make that mistake again, it was much too much and at the next meet I planted myself in a back corner well out of the way. That was nearly 2 years ago and I’m much improved now but still enjoy going there :smile:

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Thank you for responding. Tomorrow is the local Aphasia clinic but he will not go out twice in a day and we have to have flu jabs in the later afternoon. So yet again, we decline the invitation. Maybe next time!? I also work from home and twice out means my work gets behind times too but it is C’s decision! Thanks for the tips though.

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Thanks for the offer. Tomorrow is awkward as that’s his nap time followed by flu jabs out at the GP surgery- which is awfully awkward to get into as they are building and access to parking is nil. So one thing a day is all C will take! Friday evening he is agreeing to for now. Let’s try that. Thanks.

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Hi again, Roland.

Great questions!

As for the first one: My father and I were full-time carers for my mother for almost 2 years after her stroke. After she died, I wanted to find a stroke forum where I could continue my connection with stroke survivors. It helps me feel close to my mother. Plus, I can relate to other carers who may be on the forum as well. Perhaps I can share my insights to help others.

As for the second question: First, I’ve always had an interest in Eastern medicine by nature, so if something has to do with Eastern healing – I am paying attention! Second, I had a lot of anxiety for many years that I couldn’t resolve, no matter what I did. About 7 years ago, I happened to stumble one day on a youtube video of Mingtong Gu. From then on, I was hooked. But, it was only about 2-3 years ago that I got heavy into it and starting to follow his teaching much more closely.

I’m not sure if I ever shared this. Six months before my mother had her brain bleed stroke, she was diagnosed with an autoimmune blood disease called severe aplastic anemia. She had no pain, but required blood and platelet transfusions weekly. Her initial treatment ended up not working. Just as we were considering doing a second treatment, she had a stroke one day in the early morning hours. The cause was severely low platelets, but there may have been more to it, though we will never know for sure. And, as you know, she made a fantastic recovery on a physical level, but her mind deteriorated over time (both emotional and rational mind). She then went on to have 2 massive seizures caused by scar tissue left from the brain bleed almost 2 years before. Neurogenic stress led to an infection, which then led to sepsis shock, and ultimately her death.

Now, as far as “trusting the energy” – you need to believe while you are doing it that it is really doing what is said to be doing. In other words, you just know it is; there is no doubt. Now, Master Mingtong can explain it better than I can, but that is the general idea.

I have a big heart. That’s why I took care of my mother the way I did. I will do the same for my father if I don’t die before him (and needs a carer). I don’t like to see others in pain. I had a lot of anxiety issues over the course of life and felt that no one ever really understood my pain. I know what it’s like to feel alone without anyone understanding you.

Talk to you later, Roland. Have a great evening.

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@AnneC

You never need to feel committed when it comes to these sessions. It’s just something I hope is useful. If the time isn’t right then it is okay but on the other hand I hope you both can enjoy meeting up when you are ready.

There is no pressure, just sit back and listen or speak up and have your say, relax and enjoy the experience.

I always say bring along a drink and a snack if you like.

I hope to see you both soon.

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