Kindly put together by Crystal Favel

This list of symptoms was written by Crystal Favel and her husband. who at 48 is 5 years into a diagnosis of Young Onset Dementia and can be found on Instagram at @Chris_Kiyam

We have left this list in Crystal’s own words and spelling, as she so rightly said…

“There are grammar and spelling errors. We kept it in because it reminded us of how I was back then.” 

So, now for her list of symptoms that she, and her husband, noticed between 2015 and 2019 as they began to realise the onset of Dementia was beginning…

  1. Difficulty completing my thoughts.
  2. Radical bad spelling of easy words has increased. Phenix – Rnexix. Hard to read and write more than 2 sentences.
  3. Use double meaning words incorrectly. Hard to read and write more than 2 sentences.
  4. Acute anxiety in crowds.
  5. Flashbacks to grade 4 school experiences.
  6. Crave unusual foods for me – “recess sandwiches” eating cheese sandwiches I used to eat in Grade 4 specifically that I have not eaten since public school.
  7. Extreme fatigue everyday.
  8. Very forgetful – can’t remember questions people ask me.
  9. Hearing too loud.
  10. Hard to find the right words and spell them out loud.
  11. Hard to recall previous conversations.
  12. High blood pressure.
  13. Hyper sensitive to the outside world.
  14. Overwhelmed in crowds or just meeting new people.
  15. I stutter sometimes trying to find the right word.
  16. I am unable to walk long distances, be outside longer than 15 minutes at a time.
  17. Brain games triggered my second brain attack approximately April 25, 2016.
  18. Do not go out by myself.
  19. Forget to take meds and which meds I have already taken.
  20. Unable to handle high-pressure situations.
  21. Unable to interact with crowds without panic attacks
  22. Extreme frustration because I have difficulty finishing tasks ie, cleaning, packing boxes, grocery shopping.
  23. Over stimulation causes head pain.
  24. Hyper-emotional.
  25. My husband helps me take baths, cook and general personal upkeep that I can’t remember to do everyday.
  26. Hide behind my husband and let him speak for me in public.
  27. Extremely anti-social
  28. Say harsh things sometimes to people I don’t know, unknowingly.
  29. I “shhh” children in public
  30. I have left the stove on 2 times.
  31. I have put my shoes on and stood in the hallway ready to go out but had no plans to go out.
  32. I can handle about 10 minutes of tense critical thinking until my head pain starts.
  33. My vision reading words is almost 3D and slightly wonky.
  34. I act like a child when I’m upset.
  35. I left a plate in the chili crock-pot turned upside down just after I cooked it.
  36. Less tolerance towards people in general, but especially rudeness – I become confrontational.
  37. I hide my condition by avoiding face-to-face conversations.
  38. Must wear a hat outdoors and avoid getting sunburn or overheated or I feel sunstroke.
  39. Memories of public school as a child always come up.
  40. Break down in panic attacks up to 5 times a day.
  41. I like to put people in their place verbally if they cross my boundaries, but probably more severely than I should.
  42. I try to pack up boxes but I don’t know how to organize or decide to what goes in. I can start tasks but rarely finish the tasks because I am constantly forgetting what I was doing before. It takes time to recall why I am standing in the kitchen when I needed to use the bathroom.
  43. I am afraid to socialize because people notice things about me that are different in person, as opposed to email.
  44. I am scared to tell people about me.
  45. I am no longer an extrovert, I’m now the opposite of what I used to be, introvert.
  46. I yell back at people in cars now.
  47. I cry at least once a day in emotional outbursts, often times unwarranted.
  48. I get severe headaches after conversations that last more than 15 mins.
  49. I am dependent on my husbands care to get through the day.
  50. It’s hard to remember what I ate in the same day in order to remind myself to eat.
  51. I don’t trust people now; I think the world is purely ignorant about young people with invisible disabilities.
  52. I can’t remember when to take my meds nor which meds I have already taken.
  53. I am deeply disturbed about the crisis I’m in.
  54. I am forgetting bank codes and ATM processes.
  55. I don’t feel like an adult in my brain.
  56. Hard to answer questions under pressure or spontaneously.
  57. I feel that animals are my closest source of calm and understanding.
  58. I care too much about what people think unhealthily.
  59. I am over-apologetic and over-thankful, very impulsive & repetitive.
  60. I asked the same question up to 3 times in one day.
  61. I wonder aimlessly in our place forgetting what I was supposed to do.
  62. Very hard to sit still.
  63. Beeping sounds from the construction next door for 2 years is driving my senses through the roof. From 7am – 7pm, nonstop machinery beeping.
  64. I have donated half of my clothes and crafts because I do not feel emotionally attached to my belongings anymore.
  65. I can identify with the movie “Beautiful Broken Brain” because I am suffering.
  66. I couldn’t remember the chainsaw for months. Someone told me to use it in a sentence and it would help me. And it did. I am relearning language and how to recall the world. “I saw a bicycle chain – Chainsaw.” It is clear, I need to relearn many language and basic sentence rules.
  67. I don’t know how to work the calendar feature on my phone now. Before the brain injury it was easy to use.
  68. I wish to isolate myself in nature to calm my brain saturation.
  69. I went to the bank and couldn’t understand what the teller was saying. I explained I have a brain injury and can’t understand the terms she was reading off her computer. She then gave me a link to the document on the website so I could get my husband to read it later. I am unable to manage finances.
  70. I stare off into voids and it’s hard to come back to move on with the task at hand.
  71. I feel like my body temperature rises way too fast and it makes my brain feel like I’m wearing a motorcycle helmet. I used icepacks 2-3 times a day, and bring icepacks when we go out in the sun.
  72. I hide behind my husband in public to avoid dealing with public.
  73. I crave routine more than I have ever have.
  74. Difficult to handle surprises; change in schedule, location, last minute decisions.
  75. I get blocked from my thoughts when more than one person talks to me.
  76. To avoid confrontations, I only speak 10% of the time.
  77. I am avoiding phone calls because I don’t want people to hear my deficiencies.
  78. I wake up in the middle of the night because of the pressure I feel in my brain cause headaches that require ice to soothe me.
  79. Ice packs are a main source of immediate comfort.
  80. Sometimes I feel like there is a metal rod through my left eyebrow and it’s stabbing intermittently.
  81. Acute headaches feel like my brain is swollen beyond my skull.
  82. I don’t have support any from my extended family.
  83. I am always unsure about what I’m going to say next.
  84. I get extremely itchy on my face when I get over-heated.
  85. Constant word mix up. – Used – sued. 
  86. Can’t think more than 2 steps ahead in my daily routine.
  87. My senses have been heightened especially my hearing. Everything is amplified too much to handle.
  88. Lost ability to reason emotionally most of the time.
  89. Anxiety increased drastically.
  90. Forget what I talk about half way through the conversation.
  91. I have difficulty remembering from my past and anything that happened before my first brain attack.
  92. Black void in my speech patterns, unable to find the right words.
  93. I don’t trust myself alone outside without my husband.
  94. I am personally broke and unable to care for myself.
  95. I am unable to lift more than 10 pounds without feeling extreme head pressure in my brain.
  96. I have difficulty remembering appointments and have been late unknowingly.
  97. I am unable to go to the dentist to avoid triggering my headaches.
  98. I bring icepacks to wherever I go.
  99. I am not the same personality as I was before September 2015 because I’m timid, awkward and miss social cues.
  100. I have only been out once to a BBQ social gathering since my brain injury and I cried twice that night because the kids and hectic happenings triggered panic attacks. Really no logical triggers existed at the time.
  101. Recently, I had 5 panic attacks in one day.  
  102. My flight or fight impulses prevent me from interacting with society to apply for jobs.
  103. I’m genuinely afraid of confronting men because they come off as aggressive when I’m trying to talk.
  104. I feel that I’m in crisis 3 times a week.
  105. I can only read one page in my book until it brings on painful headaches.
  106. I have lost my independence and potential to work because I cannot remember details that are givin to me.
  107. I feel lost and shame that I am broken.
  108. I am unable to travel alone or go to the hospital appt’s alone.
  109. My life is crumbling before my eyes and there is nothing I can do about it.
  110. If I were to have children I think it would kill me.
  111. I can use my toothbrush but I have to be reminded to brush my teeth.
  112. I need help getting in and out of the bathtub.
  113. I have lost important glasses, keys, phone and meds because I cannot remember where I placed them. I literally draw a blank looking for items and where they might be.
  114. I rarely sleep through the night without nightmares. My sleep is interrupted often and it’s hard to get back to sleep.
  115. I feel exhausted when I wake up.
  116. I find it incredibly difficult to fill out forms.
  117. I still don’t know what the word “except” means even though I have looked it up in the dictionary. I cannot remember.
  118. I feel off balance when I walk and it makes me bang into furniture.
  119. I drop keys, drinking glasses, hats, etc. because I can’t seem to focus on holding them.
  120. I lose focus when people try to talk to me.
  121. I can still drive locally very well.
  122. I would never take public transportation without my husband. I would only be able to last an hour.
  123. I still suffer from IBS pain attacks
  124. Difficult to communicate my medical needs to the Pharmicist, not knowing which pills to order and how. I had to identify myself as someone with a brain injury and she was very understanding to explain a few times.
  125. Constantly pouring cups of milk and leaving them out around the apartment forgetting where I left them.
  126. Poured out hot margarine down the sink instead of just straining it into a bowl as originally planned.
  127. I have put a green sticker on my key that opens our apt door because I can’t remember which key to use every time we walk up to the door.
  128. Poured water onto my hand instead of into a cup.
  129. Watching murder, rape, civil disobedience documentaries, never have done that before.

We are so grateful to Crystal for sharing this extensive list with us and we know that this will be gratefully received by many of you who can recognise similar symptoms.

Crystal is on Instagram – @Chris_Kiyam