Functional Neurological Disorder

This is a disorder that falls somewhere between Neurology and Psychology.   It’s basically when your neurological system starts to shut down for no apparent reason.  There is no physical cause for this to happen.  People speculate that it is historical trauma that blocks the nerves and transmitters from firing properly.  The end result is senses not working properly.

I was diagnosed with this disorder in Toronto by a physiatrist.   A physiatrist works with peoples physical self.  For me, this disorder means that on any given day various parts of me won’t work.  One day I won’t be able to feel my legs and weakness will make me paralyzed not being able to hold my own weight.  On these days I need to use the wheelchair and transfer appropriately.  Other days my legs will scissor when walking and I’m fine in my home with the walker but will need a wheelchair when I’m out and about as exhaustion inhibits me from functioning, tripping over my feet on a continual basis.   It has ripped me from my ability to read and write.  I use speech to text software to write and text to speech to read.   My energy encompasses itself and every single thing is mentally and physically exhausting.   My senses that do work shoot into overdrive, especially when I see fear.   When I’m sitting down having a 1:1 chat with someone I’m blocking out every single thing that is around me.   I hear the furnice too loudly, I wonder if there is a mass muderer on the city bus that drove by, the garbage truck could hit the snow bank and end up in my house, did I turn the stove off, if I sit too long I’ll get sore, the lights in the room are too bringer, the person I’m talking too is probably judging the chair today.   The fear, anxiety and stimulation hurts so much.   

The wilderness of grief

As grandma passed away in February I have been in the heart of the grief process. If feels like a never ending volcano since then of things tripling down flowing out of me. After getting on the plane heading back to Thunder Bay after the funeral mom and dad left and headed on a dream vacation around the Caribbean islands through Princess Cruise lines. Many of us know how that ended with suspected covid cases on board being a quarantined into the cabin and then and quarantined at CST Trenton for two weeks before being allowed to head home. During this time my other grandma went from the hospital to a rehabilitation hospital nearby. Due to the long-term homes being shut down she is no longer able to transfer to the seniors residence which the family had hoped for. Covid has been in our family longer than many other people around Canada. I need a way to express my grief healthy before turning to dire needs through other services. Thankfully my grandma passed away I was in the midst of a grease and loss program through hospice Northwest and Thunder Bay. Part of their aftercare program is to offer Clients the opportunity to participate in her support group session biweekly with the facilitator. As mine happened to be in the Mr. Covid they decided to turn to zoom. In the first session they were four of us and the wilderness of grief finding your way was presented to us a book by Alan Wolfelt.  I downloaded the copy straightaway and immerse myself into the book. As many of you know I find peace through the wilderness and this was a way that I am able to express my grief openly and honestly.

Chapter 1: Open to the presence of loss

We need to honour her pain respect yourself and be open to her pain. We are change people. We intend yourself to heal in a positive way I need to create mental pictures of happiness. We need to breathe life into our soul. We need to make it our friend. Mourning is OK it’s the sense of feelings versus views in the public society.

Chapter 2: Dispell misconceptions about your grief

Everyone needs to find a path that is right for them. People in society will try to drag you off that path however you need to keep to the path that is right for you. Nobody grieves the same. Grief is the internal thoughts how we express the one that passed to others. Morning is the inside versus outside and how we heal. It’s not a linear process. There is no true way of showing where we should be it is very personal. We feel we lose connection is when people die we lose since her self. Identity I roll our self-confidence day with that person we lose this as a personality we lose a sense of security. Both emotional and physical security Financial and lifestyle changes when people die. We lose the loss of meaning we turn to a higher power we ask why we fight hard to find joy in the world everyone grieves differently and we need to allow ourselves to setRealistic expectations for ourselves. It will hurt more before it hurts less.

Chapter 3 imbrace the uniqueness of your grief

Your grief will be full of twists and turns we can’t compare it to another person‘s we need to take it one day at a time. We had relationships with the person who died the closer you were to them you may mourn a lot more than when you were far away from them however that is not always true. It depends on the circumstances of the death was it sudden we may not have any preparation the older and fuller their life was some people find it easier to grieve was a preventable could you have done anything This is the lack of control. We need to make sure we have support to heal healing requires gentle people who understand and is willing to walk with us. People that are not judge mental. People that will share their experiences when you ask but give it to them selves when you don’t. Some people‘s personality will show how you react some people‘s personality of the person who died will come out. Again find someone you trust with a judgment. What stresses are happening in your life well you’re grievingHow was your physical health because it was declined as your grief. 

Chapter 4 explorer journeys feelings of loss

What are you feeling your feelings are very unique to you first there Charcot numbness in disbelief do you feel like you need to protect it from the death it helps us survive the shell shock does. There might be faces of disorganization searching yearning you could become forgetful we lose the sense of their presence in the person who died difficulty with eating Medicare. Anxiety panic and fear what is your purpose in life how are you going to survive hold these tight as you’ve been threatened be aware of your own mortality but no it’s only temporary.Do you wear of explosive emotions. Some might protest it is a normal experience we need to give her cells permission to let it happen it should fade with time if it doesn’t make sure you connect with the counselor. There might be fears of guilt and regret if only his worker grief verse know that is OK. Remind yourself every night I have the right to feel sad. Don’t tolerate sad at once. Live toward your sadness and ignore the comments as get over it. Remember your emotional spiritual Susa Cole self has been injured tend to your injury and take time to heal. Depression might suddenIt’s a total sense of loss and control they might be release and release don’t adequate to lack of love do you need to release your feelings and be released if the person has gone to heaven sometimes find hope in your journey and stick with it through the trials of life. Fully enjoy wilderness to reconcile with your grief

Chapter 5 recognized you are not going crazy

This is a key trail marker that will seal surreal. Doubletime distortion pass versus future are frozen early in the days you’ll be so focused you won’t have energy the world still turning but you were just living in it as it’s fading away spinning on his axle make sure during this period of time that you’re focusing on yourself don’t fear that you are being selfish you’re probably be rethinking a retelling the story of your loved one that has passed some may think this is a compulsion however retelling the story is doing work in the morning be patient with yourself Some light dissolve in powerless and hopelessness. These are feelings that are natural. Share your grief with others as it may diminish. Grief verse or emotional sharp verse they are natural and you’re not going crazy. Crying is subbing may happen these will be trigger feelings but your emotions are being released as you cry and sob so let yourself. You might have linking objects things that are owned by the person whose died they were soft in overtime. Maybe you’re sleeping with a shirt that they always were. Maybe you have a picture hung up or look through the photograph albums more frequently. You may have suicidal thoughts they won’t be active wishes to want to die but instead it’s for the pain to go away. Let yourself be helped it’s like tunnel vision however if you do have these feelings make sure that you reach out to a professional counselor and let them know how you feel. They are the only ones who actually be able to help you. Dreams they will show up and you can’t stop thinking about Dennis. You’re searching for finding a person that is lost the death of the person You’re searching. You’re trying to develop a new identity but not sure how. You’re exploring unfinished business with the person and you’re hoping for the future. This will all show up in your dreams. Just like dreams nightmares may occur there frightening but you need to talk about them and get them out into the open. Don’t keep them bundled up and shut side of you. There might be mystical experiences you may see or hear the person who I died be thankful for them and comfort them allow them to be present look for the tram marker and stay on it. 

Chapter 6: understand the six needs of morning

they are central needs that aren’t ordinary and predictable so I may happen at the same time where others will be individualized. Except reality of the death gently realize they’re not coming back push away to survive it may take weeks or months so be patient and excepting the reality of death however there’s also embraced pain of loss. Confront the dose of pain distract yourself in a safe place don’t overload yourself. Neuert yourself with physical emotional spiritual lives. Remember the person News died it through our Jack’s allow yourself to embrace the memories talk about them write about them keep all of pictures places remember it past hope and future. Develop a new self identity what is changing your life what are the new roles in your life. Search for meaning philosophy of life allow your self to openly mine and find your own pace as you walk through this together. Make sure you have ongoing support it’s the quality of others not the quantity rely on others it may take months or years however I appreciate the impact. 

Chapter 7 Nurture yourself 

have self come passion. Being hard on yourself as part of the morning. Good self-care is not about being indulgent however instead we find meeting in our self physically emotionally cognitively spiritually and socially. Physically please respond by having trouble sleeping when you grieve you need my rest you might have muscle aches and pains agitation if you are sick the sickness usually becomes worse your body is the house that you live in. Emotionally support yourself inside and out come to Milyer with yourself and only yourself. Cognitive reasons of logically short term memory loss might be part of it it will probably be hard making decisions however allow yourself to breathe and process. Socially reconnect with the world around you being nurtured spiritual questions like is there a God a creator a higher power why me what is the life worth living you need to nurture your spirit first. 

Chapter 8 Reach out for help 

find companionship with others sick out the helpers in life this will allow you to share your pain and make it more bearable. Strengthen In numbers. Surround yourself with caring people a clergy or get a counselor. Help comes in different forms with different people. There are three different types of people in life when third will be and the empathetic helpers willing to be involved. 1/3 will be the neutral people who are there but not there. And 1/3 will be harmful to you make sure you forget those people. Helping glass embrace hope and count your presence companionship in your journey. 

Chapter 9 Seek reconciliation not re-solution. 

Follow trail markers through the journey of the wilderness to find a way out. Wilderness lives inside of you. Some believe grief journey ends when you recover however the journey will never end. Have renewed sense of calmness as it’s necessary more Hardwork than most belief. Reconciled grief journey when full of reality of death is a part of us. It is when the head in the heart at the same level. Reconciliation is not resolution. You make me you make me take small advancements in the side of larger changes. Hope will have it again. You’ll reconcile with the death. Do you have stable eating enjoy life you’ll have a new relationshipYou’re welcome change in your head awareness over your life again. 

Chapter 10 appreciate the transformation 

not every person will be the same before the death is after the death. Growth means changed more sensitive to others. You’ll develop new skills a new linear balance where there is no implants. If you at least make change.

PNES

Another diagnosis I received in Toronto from the Rehabilitation Hospital was Psychogenic Non Epileptic Seizures.  For me, when my body feels it is too stressed it stops responding to the environment around it.   I freeze and it looks like I have dropped out of the world.   My eyes may roll back in my head, but mostly I just shut my eyes unconsciously.  After a seizure I will sleep for a few hours.  This is because the work my brain has to do behind the scenes.  They are extremely scary for me, and for the people around me. I’ve never had one on public, and probably never will.   But if I do, please just talk me through it, reminding me I’m in a safe place and be gentle as possible.  When I come too I’ll probably be very acetates and embarrassed.   Sometimes I don’t know where I am and will usually forget what I was doing immediately before hand.  Help me get oriented.  Tell me who you are and your position in my life.  Remind me where I am and what I was planning to do.  Be calm.  Here’s a link to a video thT many doctors have put forth. PMA1EYAg9y5kYou tube

Social prescriptions

In September I was nominated by both my nurse practitioner and mental heather worker to join a committee that was starting at my health clinic.   Of course I was enthusiastic about getting involved and creating a new sense of belonging for myself,   The committee was being a health champion.   The way Ontario want to create Family Heath Teams is for the whole building to be utilized.   We don’t want people to feel intimidated going into their doctor to get a prescription.  We want them to feel like their visiting their friends and feeling comfortable where they are.   

Doctors and nurse practitioners are so busy in their offices they don’t have the time needed to model healthy wellness practices that need to be incorporated into the families home.   Health champions do just this.   Doctors can now hand out social prescriptions for people who need that extra push and feel like they belong.   Whether your out learning a new skill, getting fit with physical exercise or just having a cup of coffee with a new pal the prescriptions are being used for worthwhile causes.   

Based in Europe, Health Champions came to Thunder Bay to provide a workshop on creating the healthy environment.    In Thunder Bay at my Health clinic, on any given week you can pick up a pair of knitting needles, have a cup of coffee, do some chair yoga, cook a healthy meal, talk about FASD with another parent raising a child too or even participating in mindful movement.   If you’re in the waiting room and your head is cold there is winter toques and maybe a pair of mitts waiting for you and sometimes an apple or orange to go with it.   

It works.   Come see me in my « yarning room » you can play too!  

Click on the purple link for the CBC article about it.  

social prescriptions

From legs to wheels

As a person with chronic pain we dislike it when our bodies decide to take a nose dive.  We dislike it when the aches and pains get worse.   Instead of it being a once and a while pain, it is a daily pain.  Its when the pain gets worse and fatigue goes down that our bodies react differently.
The way my body reacts is to go completely numb, acting in a paralyzed fashion and the weight that the legs carry falls. 

In March 2017 after a hard fall on the ice, there were many repeated falls.  They turned into daily occurrences that turned into falling four to five times a day.  This is when the chronic pain program provided me with a rollator (Four Wheeled Walker).  The walker kept me upright, mobile and I was able to regain my independence on the things that mattered in my life.   The walker was life changing.   Until it wasn't. 

After having major surgery in June I never regained the endurance and energy that I previously had.  I was tired more often and my head began spinning in the same fashion as when I was falling.  The falls started all over again, but this time with the walker.  They happened both in and out of the house.  However, the majority of them happened when I was out of the house after making a few trips in and out of the stores.  They also happened as I was more stimulated from the environment.  Due to the brain injury once my brain becomes stimulated by scents, visual information or loud noises it begins to shut down. 

After numerous trips to the emergency department, speaking to occupational therapists and physio therapists, medical professionals and my psychotherapist it has been decided that the next logical step is to introduce me to a manual wheelchair.   Currently, I'm using a transport wheelchair to get the feel of sitting.  However, the downside of the transport chair is that someone has to push me all the time.  A manual chair will give me the opportunity to gain more independence again and allow me to go out and about safely without having the constant thought that I am going to fall and end up with another dreaded brain injury. 

There is a lot of consider when transitioning into a chair.  However, the pro's outweigh the con's as I gear up for the transition.   I'm working closely with my physio and OT to ensure mobility continues to happen and I don't let me muscles that I do have go to waste.  Swimming will be top priority too!

I feel like I am not honouring my body during this transition.  I feel like I'm less humane in the chair.  Even though, at the start at least, it's going to be for part time use community use, I feel like I am robbing the 'wheelchair' population.  Conversion Disorder is complicated.   Like why can I walk perfectly fine in the mornings when I'm by myself in a minimal sensory stimulating environment but by the time I go into a stimulating one, i'm a wreck falling 3-5 times an outing.   This past week my legs have gone completely paralyzed on 3 separate occasions.   One of these times happened to be in the hospital, another one in my psycho-therapists office.  Even in the hospital, it was a supportive environment where I hung out until they became alive again.  Scary is a word for it.

I'm being prescribed a Halo Composite a7.  It's lightweight and compact.  Burgundy in colour this baby will allow me to be a new me!     The goal is to use it if I'm going to be taking 15 steps or more in any given direction without a seat in between.

If you see me out and about, please don't make a big deal of it, because it's the eyes and the reactions that will keep me going (or not).

Case Manager to Client

As a professionally educated person, it's hard to see myself with a chronic illness.  I have four degree's and have worked both as a teacher and a case manager.  Then, a vacation of a lifetime ended up leaving work with a bang.   I was once the person who was entering families homes, documenting the area, the personality and the appearance of the person and how I am the one who is having my care team enter my home, having hard discussions than leaving to write pages of documentation about the visit.  It is weird.  There is no other word to describe it.  What are they thinking of me?  Every move I make is being documented on.  The appearance of my house, the various pieces of my world are out on display.   If the dishes are washed, the food scraps on the table and how my clothes look are a snapshot of their records. 

We shouldn't feel judged, as as the client but we do.   We dissolve our lives into the care team, and in return they try to make plans that work for us.  They assist us is various facets and capacities to try to give us a 'normal' life, being able to socialize and stay safe and healthy.  But in the end, what is left is us, feeling violated and judged. 

When you enter a clients territory remember, this is the clients home and space.  The space you are attempting to create safer is the place they need to stare at every moment of the day, and remember the time they were told they could never go down the stairs anymore.  The time the grab bars were installed, the platform lift quoted on and the time the garden needed to become a space for the walker to sit. 

When people look at me, they believe I'm a typical person.  When I tell them I cannot understand their forms, needing assistance to read, and then when writing backwards and upside down their impressions change.  They automatically start speaking extremely slowly and loudly like the tone of their voice will assist in me reading and comprehending.   Then when I tell them my education and the brain injury their looks of concern become helpless.

Remember, my followers, we were once EDUCATED PROFESSIONALS who have lived unfortunate circumstances.  But we will get through this too. 

Children’s book

I have started therapeutic riding as a way to express myself I do believe when the language written expression is not there. Here is the link to my children’s book that I have made to fill in the gap’s of the literature.

What happened to my auntie?

©SamanthaZrobin2018