Struggling as a Caregiver in Canada

Hi there. My husband was diagnosed with FND just over a year ago and until recently I think I've been handling it well. His symptoms came on very suddenly and he was diagnosed very quickly compared to many others who suffer from this condition so in many ways we were lucky. It has been so hard watching him deal with his symptoms as he went from a man who thrived and loved life, who was independent and active to someone who stutters or cannot speak at all, who has trouble walking and someone who for awhile couldn't be left alone in case he got lost. Someone who forgets the names of our pets and can't remember where our daughter is going when he sees her on the bus to school in the morning. A month or so ago, I found that the burden of caring for my husband and being the sole financial provider for our family has really become a struggle for me and I don't know who to talk to or where to turn for help. In the face of what my husband deals with every moment of every day, my struggles seem miniscule by comparison, but it is struggle nonetheless. Is there anyone else who has experienced this overwhelming weight on their shoulders? I would be grateful to learn of anything you have tried or books/resources you have read that might have helped.

51 Replies

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  • Hi Bambey3

    I'm not a carer I'm a sufferer but I'm also a nurse so understand how much one persons illness affects the whole family.

    It sounds like you have been doing a really great job amongst really severe symptoms.

    There are two websites the FND hope website and neurosymptoms.org websites.

    I'm not sure how helpful they will be to you as it sounds like you could have written them yourself but it does give information about this disorder and the second one is written by Dr Jon Stone who is in Edinburgh.

    There are 2 main docs here in the UK Dr Stone in Scotland and Dr Edwards in London there are a few people on here who are seeing one or the other.

    There are also a few people in the US on this website I know the Mayo clinic is mentioned a lot.

    Do you have a good neurologist?

    Does your husband get any treatments?

    You will find a very mixed group on here from some who are still struggling to work to others who are really suffering and I'm in the middle somewhere I think but I still don't know from day to day what I'm going to be able to do. I live alone and struggle not having support.

    If you have any questions, want to chat, scream, laugh, cry then it's all welcome on this site. I think Iv done all of the above and Iv only been going 3 years now and on this site a few months but we are a family here and all friendly and welcoming.

    It's early in the uk and people are all over so I'm sure you will get a few more replies soon.

    unfortunately I got diagnosed then dumped a year ago so I can't give you any appointments, treatments insight yet, and I'm sorry your husband is having such severe symptoms so I'm hopeful someone who has better knowledge about what they have went through can give you better answers. And, there are carers on here too x

  • Thank you very much for responding. Yes he does have what appears to be a good neurologist. She has been seeing him for a year now.

    The first neurologist who saw him in January 2016 said his symptoms were caused by stress though he had none. He presented with stuttering, head and arm tremors, seizures, trouble seeing, pain in the chest and behind his eyes. He was perfectly fine one day and then the next he started stuttering suddenly. Within hours the tremors and pain started. He was hospitalized for a week while they did tests and had 2 seizures in the hospital. His symptoms initially last 10 days and then went away. They tested him for everything they could think of the first time and ruled out conditions like Parkinson's, MS, ALS, tumours, etc, etc. They did CT scans, MRI's, blood work, EEG, EMG and a lumbar puncture.

    3 months later, we were talking in a store and he started stuttering again. 12 hours later the muscle tremors were back. 2 days later, he had trouble making his right leg work properly and his left hand started moving in weird ways on its own. Over the next 3 weeks he started having what appeared to be grand mal seizures and dissociative seizures. We took him to Toronto to a hospital that specializes in Neurology and he was finally diagnosed. He has tried some physiotherapy which helps with the tremors and his walking. The stuttering is not as bad as it was, but recently he has moments where he cannot speak at all. He tries, but cannot get his mouth to form the words. His biggest obstacle is the fear. His body is telling him to be afraid of things. A moment ago, he looked around in panic. He felt scared, but had no idea why. His memory comes and goes. He has also seen 2 neuropsychiatrists and a neuropsychologist who have all ruled out conditions like Alzheimer's and other forms of dementia. He is starting some exposure therapy now to help deal with his fear surrounding external environments building up to spending time in a place with a lot of people like a mall. He is a truck driver and having his license suspended and not being able to work and provide for the family is so upsetting for him. There are days that he barely gets out of bed.

    Thank you so much for taking the time to respond to my post. I am truly sorry that you are going through this alone with little support. I hope this site has helped you. :-)

  • Bambey3

    Good morning.

    I see my friend Amallia has given great guidance already this morning. I am one from USA living in Seattle, WA. Amallia provides support and medical expertise to many of us here so I thank her again.

    My wife has carried the burden of this disease effect on me for twenty four years. While I was able to work for most of those years, I am now physically unable and housebound most of the week. We raised two children through it all and they are supportive beyond belief. The youngest of the two has also been given the diagnosis although no genetic linkage is known as the cause.

    We are here in this community to help if we can. I know your burden is heavy. I do not know how my wife did this for all these years. I only know that I could not have made it without her. She is an amazing person who has kept me in the game trying to survive. I love her endlessly.

    Best wishes to you and family.

    Dan / Seattle

  • Thanks Dan but you are way ahead of me in medical knowledge as you blow my mind sometimes and I have to google. I love google. I think it's one of the greatest inventions ever.

    Everyone has different information, insights. I just get that info and try to make sense of it as I did in my job as a nurse.

  • Amallia.

    Good morning. Hope it has been a good day for you.

    Dan

  • Thank you, Dan for your reply and insights. It sounds like you have been very lucky with your family support.

    We have 3 children who are 19, 13 and 8; the oldest 2 are from my previous marriage. My 19 year old has left home and my 13 year old wanted to try living with her Dad. Now it's just my husband, our 8 year old and me. Our daughter has been wonderful. She is so young and yet she is coping with this situation incredibly well. She helps him when he gets scared and when he has trouble looking after himself by getting him drinks and snacks. She has taken it all in stride.

    This is such a strange disorder. Here in Canada, there didn't seem to be many doctors who even thought of it as a diagnosis. The first 3 hospital visits were not helpful at all. It was only when we went to the "experts" that they took the time to really look at my husband's symptoms and find out what it was.

    Did you find the same thing where you live?

  • Bambey3.

    Thank you for taking time to write and share some of your most difficult story.

    I will try and answer your question first. I have had a strange journey with this disease as well. I am now in year 24 of having unexplained symptoms.

    I am 61 years old so onset was in my mid 30s. I am from southeast part of USA. As you might imagine, medicine had no earthly idea what to do with me back then. I guess I was lucky not to be institutionalized.

    Best I remember, onset was severe and put me out on six month disability almost immediately. Initial efforts were to give me psychiatric drugs to mask the symptoms. It was the horribly wrong thing for them to do. I became non functional.

    Perhaps like your husband, noticeable events were shaking, convulsions / seizures, loss of ability to walk, inability to produce speech, scrambled speech, severe pain, avoidance of all activity, difficulty being in public places, memory loss, etc.

    Episodes could last one to three days. It would then take seven to ten days to get the pieces back together just to be with family and communicate.

    I weaned myself off the drugs, told the psychiatrist to take a hike and started to work with what I knew.

    The episodes settled into cycles in between which I could start to function. I started simplifying life and limiting what used to be normal activity.

    Each time episodes occurred, I realized that permanent damage was happening in my body. I could never quite recover the strength and ability I had before as the episodes repeated.

    I found a way to function so I could work outside the home. My wife started a food business and I could work with her because I was not going to be accepted back in the regular workforce.

    Over the years, I learned with my family how to adjust and manage. We all survived mostly due to their efforts.

    The disease itself learned how to spread and evolve. We moved to Seattle in 2007 where I did make it back into the workforce. I held jobs in food service, route truck driver and finally grocery store clerk before I could no longer work.

    The disease in me caused systemic nerve damage. In addition I developed complex movement disorders, muscle wasting, optic nerve damage, facial spasms and now autonomic dysfunction.

    I am now home bound, had to give up driving license. Best I can do is some house cleaning and cooking, laundry and take care of our pets. Can not stay up more than few minutes at a time. Will not give in to it...

    After hordes of medical tests and invasive procedures, doctors still do not know. They gave up and slapped the FND label on me.

    For you. I am thrilled that you have courage and strength to help your husband come back. I know he will at least have periods when it will be better.

    Your daughter is a testament to you both. My youngest was around eight when I was struck down. To this day, she has not left my side. You must be so proud of your kids.

    My wife and I just had our 40th wedding anniversary. I owe her my life. Simply an amazing person who has been with me every step.

    Interestingly, the youngest daughter now has the diagnosis. My turn to care for her.

    Medicine has improved. But I find no reason to give you that would indicate they know the scientific cause or how to successfully treat it. It is still an unknown. A medical mystery.

    Please share hope with your husband. The fear part takes a lot of reorientation and experimenting with his new boundaries to overcome it. I believe that he will with your help.

    Please know his determination to gain function back to provide for his family is a great sign. The body has capability for self repair and ability to restore function even if it is different than what he had before.

    Use the doctors to find out what you want to know. Ask. I have been reading medical anatomy and research papers on the internet for a decade now. It was best thing I could do. The more you know the more you can ask for tests if for no other reason than to rule out causes.

    Life is so precious. You seem so caring and family focused. You will make it.

    I work at this for my wife, daughters and this community of friends. We try together.

    Daughter just came in door having attack. I have to go.

    Our family love to you.

    Dan / Seattle

  • Dan I had no idea your daughter now has this. My girls have always been afraid this might happen to them. My heart aches for you and her. Funny we sound so similar in all of this. I always think what the heck is this thing...and yes, it seems to be progressive. Forever changing. Prayerfully in your daughters life time maybe a name, and then maybe a cure. We can pray.

    At this point the autoimmune disease is what is kicking my but. The joints are so painful and becoming disfigured. Fingers and toes look like sausages, and now to top it all off my hair is falling out. And I have always had long hair that my husband loves. And as always he says I am still beautiful, I can wear a hat, it'll be fine. Thats the one thing this stinkin disease cannot steal, Our Heart and our love. Holding your family in prayer tonight. God Bless, Cathy

  • Cathy,

    Was hoping to hear from you. Brings peace.

    She had tough time tonight.

    Bambey3 and her story brought to mind how my youngest daughter watched me go down when she was about 8. But she never left me Cathy. Always there to help and care.

    Now she is in her 8th year of this, I believe, and it is me to be there for her.

    She has the autoimmunity marker from tests so far.

    It is a painfully slow process to push doctors along.

    Thank you for contacting me.

    Always be with you.

    Love from our family.

    Dan / Seattle

  • Dan, Is it possible for the two of you to get a referral to one of the major hospitals I have listed, like Mayo, or New York, or the Cleveland Clinic. The neurologist there is really working with me to try to get some answers to what this is. Every time I see him or he writes, He asks the same question in his notes, What is this she has, and he keeps looking. Just heard from him this morning. He now knows it is not psychological because of the testing, so he keeps looking to find out what it could be. I think with the two of you going together they might look into a gene connection. I am praying for you all as well. I keep going one day at a time, each day finds new challenges, but also new rewards. Trusting God that He thinks I can handle this, and so I will, where ever it leads. God BLess you and yours.

  • Cathy.

    Have to be brief this morning as monitoring daughter closely.

    I thank you for each thought you wrote.

    We will do what we can right now.

    Love to you and all of your wonderful family.

    Dan / Seattle

  • Hugs to you and AndreaπŸ€—

  • Amallia.

    Legs deteriorating. Tried to walk dogs. Left side gave way on edge of sidewalk. I'm done. Try to find you tomorrow. Be patient with me.

    Love from family.

    Dan Seattle

  • Oh Dan, my heart breaks for you and your family and all that you have been through. You sound like an incredibly strong person. I am truly sorry that your daughter is now going through this. In our short time dealing with this condition, it has become clear that most doctors don't really know what it is and others still stick to the tired line that it is "all in your head" or due to stress when that is not always the case. Like Cathy, I pray that sometime soon they find a cure for this and at a minimum treatment to make the lives of people afflicted with this so much more enjoyable.

    Thank you for sharing your story with me. I spoke with my husband last night and shared a little of your story with him. I am hoping that it will encourage him to keep fighting.

    Bless you and your family.

  • Bambey3

    Daughter's condition requires close monitoring right now so I will say with a smile that you and your family have great big heart. Your wisdom already shines through in this battle.

    Thank you and God Bless.

    Our family sends it's love.

    Dan / Seattle

  • Thanks Dan. I am sending prayers and positive thoughts for your daughter today.

    My name is Tammy by the way. ☺

  • Tammy.

    Nice to meet you.

    Will keep posting as I can.

    Dan / Seattle

  • Good Morning, Does your husband have a good neurologist?? can you get a second and if need be a third opinion. He sounds more like someone who has either beginning dementia or alzheimers. Not the typical FMD...Does he receive any medication. Even a good primary Dr. or internist might be a help. If this were me or my husband I would keep seeking great medical care. WE needed to do this in the beginning, just kept seeking and looking. I went every where, Chicago, Mayo, University of Minnesota, we just kept searching until we got help. A diagnosis of FMD or FND is not the final answer for all of us. Saying a prayer for both you and your husband. I think sometimes this illness is hardest on the ones we love than on ourselves. We are here for you in any way we can help. If you live int he US feel free to call, anyone of you in the US please feel free to call me. Earlier in the day than later however, by 4:00 I am not much good to anyone physically or vocally. My email is grandmas16@gmail.com. You can email for my phone number.. My email is not up to date though on my number of grandchildren, were now at 25. :-) Love to all, and God Bless.

  • Cathy.

    Good morning. Hope this day finds you well.

    San / Seattle

  • His neurologist seems to be very good. She doesn't give up and keeps digging to find treatments that may help him and specialists who may be able to help. They ruled out Alzheimer's and dementia and are investigating the fear and memory issues to make sure there isn't anything else hovering in the background. He tried some medication, but it made him feel awful and even more lost like he was living in a black hold so his doctor told him to stop taking it and didn't prescribed anything else.

    Thank you for your response. I am glad that I posted here. There is so much caring and support here. I am very grateful.

    It's funny...I've never posted anything like this before. The only posting I've ever done is on Facebook. :-)

  • I agree with Cathy that the memory loss is a concern. It seems extreme but then I don't know how long your husband has been suffering in total.

    I'd get all that stuff ruled out. Also not to worry you I had to do testing to get into disability benefits. I'm 40 and was pretty smart and had a fast functioning brain pre accident now I struggle to get out of bed and feed pets, make bed and shower.

    But I went for benefits testing and I couldn't answer the Alzheimer's questions - repeat the following 3 words. I said it was stress and could I try again but I failed twice.

    Also I think some people find information overload affects the brain so I'm not trying to guess your life at all but maybe keeping it quiet and simple, maybe people can help me here might help with his memory if dementia comes back negative.

    I wish you all the best. I'm not even wishing for medications or stabilisation of this horrible diagnosis I want to turn it on it's head and tell it to disappear and let all these beautiful people go back to their before lives x

  • The doctors have said that his memory issues seem to be caused by an overload of stimuli. They likened it to a traffic jam. When the traffic is moving well, he feels like himself. When the traffic slows, his nervous system struggles a bit and he has the tremors, difficulty speaking, feels uncomfortable. When the traffic stops dead, he has the seizures or severe anxiety, memory issues. It's like his nervous system isn't sure what to do so it just reacts. He had no injury or sickness before it hit. He was just a happy, 40 year old guy who loved his job, went to work everyday, lived an active life and then one day... poof! Everything changed.

    They ruled out forms of dementia. We try to keep things simple and easy going for him. Our 8 year old is an angel and you hardly know she is in the house. He was always the rowdy one, making noise and playing around. When there is too much going on, he has been urged to try meditation, listen to music, anything to distract him from the symptoms. If it gets bad, he goes to bed.

  • I find just the tv being really loud gets to me. Any really loud noises.

    Meditation is good. I do it as part of my practice but I don't always keep up and feel worse when I'm not doing it.

    Sleep is good for everything. I wish I was my cats sometimes πŸ€—

  • Hello,

    I don't post much on here, but have been quite the regular lurker and I hope my input adds something to the conversation.

    When I was a lot younger, my mother suffered a spinal cord injury and I became her main carer. It is an awful situation to be in and I thought it might help if I shared some honest and open thoughts I had about the whole situation.

    First and foremost, despite what your husband is going through, your struggles are not minuscule. They are different, yes, but they are struggles none the less and you should try your best to avoid comparing your situation to others. It is okay if you aren't coping and it is okay to ask for help. I found that suddenly I had no time to myself, that all of my needs, wants and emotions were being pushed into the background and everything was focused on my mother. It sounds petty and silly to want to just get out the house for an evening and do something for you, but beyond a point, you need to feel like your needs still matter. They do. Often people are so shocked by the sudden change in a person that they will always make a point of asking after them without asking about you. Next time someone asks how your husband is doing, don't feel ashamed to say that you are struggling and if you want someone to look after him for a few hours while you go to a cafe and read a book or whatever it is that lets you unwind then ask. Most of the time people are willing and happy to help, but they just don't know how. If you're struggling with housework, why not ask a friend if they'd consider picking up laundry?

    I guess this has just been a really long winded way of saying that you don't have to cope with everything all the time. It's okay to need a break or help. You need to make time for yourself. You can read all the self help books and do yoga 5 days a week, but chances are you already know what you want to do. It'll be the things you miss doing from before your husband got ill. Make the time for it and don't feel bad about it, it'll make you a better wife and carer.

    If you want to talk I'm here. Currently writing a dissertation so I might not be back on over the next 48 hours, but I will try and keep an eye out if you need a chat.

  • Thank you for your thoughts and suggestions. You are right that it is important to take time out for myself. I know I should do that. It is hard at times. We live in a rural area without anyone close by who could help much and for a long time I couldn't leave him alone. There was the fear he might go outside and forget where he was (we had just moved when this happened) or he might have a seizure and fall and hurt himself. He was having 10-15 seizures a day for most of the last year and I have had to catch him many times to stop him from falling. Then when that fear went away, he didn't like to be where he couldn't see me. Thankfully I work from home 90% of the time or I might have lost my job. When I do need to go into the office I would have ask his parents to stay with him.

    Through all of this, I stayed calm and tied to act normal. Treat him like he was before, help when he needs it, but try to let him do what he can on his own if he wants it. I think the last year has finally just caught up with me. I now feel like I want to hide away in my room from everyone and everything except my daughter. I am NEVER ALONE. LOL I didn't realize how much I missed that time on my own until it was gone. I've tried the odd time to go see a friend or just go out to do something on my own. He seems almost angry if I take time out for myself though so to avoid the argument or discord, I just don't. It's almost like he feels that if he can't go out on his own and drive someplace to do the things he wants to do, then why should I have that luxury?

  • Bambey3

    Forgive my late intrusion.

    I read more of your posts and offer up one more item:

    The description of trafficking in your husband's brain is as close to anything I have ever heard or read that I could relate to in my own experience.

    I used to call it when the brain simply dumped out everything that was in it. I like your traffic coming to a stop much better.

    When something like this happened to me it did two things.

    First, it set in motion pure chaos in my nervous system. It would erase everything I knew about controlled functionality and would deplete my memory, intellect and all of my basic instincts such as hunger, thirst, bathroom needs, etc. all on a short term basis.

    It was like an explosion and then the pieces of function would return in slow motion taking days. But something was always left behind in that process.

    If what happened to me was even just a fraction of what your husband experienced, I can tell you it was a horror I had never known before and could never prepare for. The physiologic damage from these episodes was extensive. True bodily harm. Over and over it recurred

    The second observation.

    I would go to any length you could imagine to avoid this from happening. It was that bad. It took almost half a decade to rein it in to something manageable.

    Because of that, I would attach myself to my wife Patricia because she was the only one who could get me through it. There was no other option for me. I needed that help.

    Good news. I am not a clingy person. She has her life back and I can function on normal anti seizure type meds.

    Have hope. He can work his way through his episodes but it takes some patience and persistence.

    Again. I send you guys my heart with hope that day by day things get a little better. I thank you for letting me share.

    Dan / Seattle

  • Your experience sounds exactly like what my husband goes through. If he has a bad attack, it takes up to 3 days for him to recover and for the more difficult symptoms to dissipate. My husband, Aaron, hates the idea of taking any kind of medication, but after talking with him last night I hope that he might at least think about the possibility of taking something that might help him function better. He tried one medication and after he felt like a zombie and stopped taking it with the doctor's permission. He has tried nothing else since. He goes back to see his neurologist in August. We do have a great health care system here in Canada, but you can wait for many many months even a year to see a specialist once referred. Thankfully once you get in to see one and they take you on as a patient, you can get in to see them a bit faster. We will talk with her about other options for him then and keep trying what we can now.

    Thank you, Dan.

  • Bambey3.

    Please know it is the choice of meds that mean everything.

    Make sure he knows that the meds designed to mask over the symptoms - the ones that made him feel like he was in a black hole - are a completely different class of drugs than those which are used to suppress symptoms. The masking drugs confuse the brain and body. He wants to suppress the dysfunction so the body has a chance to self repair.

    Even within the suppression class, there are many choices some of which may be better than others.

    It took years for me to find a three drug combination that allows me to still function. It is trial and error and is wholly dependent on the person.

    He can beat this phase of it Bambey3 and that will buy you and the doctors more time to help him long haul.

    Take care. Please write when you can...

    Dan / Seattle

  • Thank you that information. That is very helpful. ☺

  • Welcome. Enjoy day. Take care of self. Tell Aaron hi and play hide and seek with that daughter. Do that with our extended family granddaughters only they like to hide their dolls. Tricia sews clothes for the dolls and kids just love it...

    Dab / S

  • Good answer Dr Dan. I think you are our pioneer x

  • Amallia.

    I pioneer like Daniel Boone. Always lost in them woods...

    Dan / S

  • I have no answers just wanted to send hugs πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—

  • Hugs are awesome. 😊

  • Amallia.

    Don't fool me...

    You have a lifetime of answers.

    You are big help in ways you do not know yet.

    Thank you forever.

    Dan / Seattle

  • I can help in some ways as I was a paeds nurse but adult and children's medicine is very different eg an adult trained only nurse couldn't work with kids. But I can help with the physiology, the medical system, tests, linking illnesses and diagnosing as I did a lot of diagnosing in paeds but in paeds neurology it was different it was acquired brain injury which could leave some with cerebral palsy or congenital defects so totally different ball game. I can describe the structures of the brain and what each does, but That's why I love to hear people's answers to meds that have worked, treatments, and your descriptions of what goes on in the brain as you have been at it for a while ✌️

  • Amallia.

    Amen to having been at it for a while. I'm there.

    Point is you are trained in medicine and understand how to use that skill to help instead of to harm.

    I am awake. Right eye shut as face contorted out to the right side. Will try to chat for bit and read posts. Legs already looking for lawn chair.

    Sittin' here listening to Willie Nelson singing "Dreaming of a Cabin.". Makes me want to go hang the hammock.

    Dan / Seattle

  • Hi Bambey3, I've been reading posts today, I too would cling to my partner if I could but he has to work to keep roof and food. I've had FND now for at least 2 years but got diagnosed last October by professor Edwards in London. For first year was treated for depression and anxiety by useless dr who wouldn't accept any view but his own. My partner mum paid for me to go private to see nuerologist, he said my dr had left me in pain for so long it had run riot and formed its own entity. I eventually had a greater occipital nerve block to my brain to help with pain in my head that would drop me to the floor. This then allowed the pain to go from neck back down but was more manageable then in my head. My partner has said I'm better when he is home. I started with sciatica. Sorry this is scrambled but it was my partner birthday πŸŽ‰ last Saturday and we have had a lot of company we don't normally see much of. It's tiring to think and respond and then not sleep well. My home has become my safety and my prison. I don't remember much of last 2 years but I know it's been hard for all my family, I rarely see them due to the noise and movement is too much for me to cope with and my brain shuts down. Just being there for your husband as my partner is here for me is a godsend, I wouldn't have made it this far without him, I know. I to wish I could get out like he still does, but if I get upset or angry about it I soon forget. Medication never helped me, just made me more ill and pain. I believe though your husband may not say he's frightened when your not there, it's hard to accept for me this let alone a man who was the head of family. I too get lost in my head and it's frightening. Good 😊 and best wishes Lisa-anne

  • Hi Lisa-anne. Thanks for your story. My husband does admit that he is frightened when he cannot see me. If I am in another part of the house, he calls out for me or will come looking for me just to be assured that I am there. He has the some trouble that you do when there are a lot of people around. Our family and friends understand that if he leaves the room to head for the bedroom it is because he is overwhelmed. He also finds it tiring to talk to people, to try to focus and deal with all the action.

    I'm so sorry that you have to go through this. I am very happy that you have support to get through it. I can't imagine how much more difficult it would be going through it alone.

    Best wishes to you and your family as well.

  • Thank you for your lovely reply, my partner is great and has been to every appointment I've had, he does get frustrated and upset too but he stands by me through every seizure, knows how embarrassed I feel. My family still struggle though, especially my daughter, she has 3 children 1 a baby. I can rarely see her because of children and noise and she still gets upset. I used to see her nearly everyday before this. It's a dreadful, illness and no one knows unless they walk in your husbands and your shoes for a day. You and my partner have a heavy load but without you both, don't know where we would be. Your πŸ˜‡

  • Is it the noise mainly and could a health professional help you to equip yourself in ways you could see the kids?

    I know noises bother me. I sleep with earplugs in but you can still hear someone talking to you but the volume is way down.

    Could that work or is it all the activity that effects you too?

  • It's noise, movement, trying to concentrate, more then 1 talking. Children young, so high voices. Earplugs and headphones didn't work in London appointment as well as we hoped they would. Just unable to keep up with lots of things going on. Even dogs toenails on floor can set me off when anyone comes round, I wait in other room now till dogs have said hello then they settle down again. Concentrate and talking I find really hard, words don't come or I forget what I was saying. πŸ€—πŸ€—πŸ€—

  • I have the same symptoms but not as severe as you. I have to tell people not to interrupt me. I had a meeting yesterday and 3 people kept interrupting and then I was just blank. I'm still tired too from the trip.

    I sometimes have to google a word when I'm on here like 'spine' very frustrating for a spinal nurse.

    Iv thought about moving to England to be closer to my family. I have one uncle, cousin, then she has 5 kids and they have just had their 10th! Kid this week. They are all very young. And as amazing as they are I don't know if I could cope with having lots of visitors and small children even though I used to work with kids.

    What annoys me is if I explain to someone I say I have a neurological disability that affects me physically and my words and concentration that they then try to treat me like an idiot.

    Il just say upfront Iv got 25 years of full time education so don't talk to me like I'm an idiot just because I have this condition. They don't try again.

    πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—

  • I too get very embarrassed, I know I sound stupid but if the words are not there, you just go blank. Phone is bad for me as really struggle to think so I no longer answer home phone. Family ring me occasionally on mobile but usually use messenger as can read words ans answer in my own time. At least I can still keep in touch if not see. I used to love writing and my spelling was brilliant but not now. Now I've forgotten what I'm writing. Not a great night sleep. Best wishes. πŸ™πŸ™πŸ€πŸ€πŸ±πŸ±πŸ‘πŸ‘

  • Lisa-anne.

    Its OK. You not stupid. I run from phone...

    Dan / S

  • Amallia. You not an idiot. Self preservation...

    Dan / S

  • Lisa-anne

    I can not stop writing today until I say hi to you and happy, happy birthday to Trevor.

    Hope you are out in garden with birds and trees.

    You are one I worry about because you showed so many signs of what I experienced. Know that Trevor is there and we are all here as safety net. I keep watching and hoping for you to catch a break from the viscious cycle of pain and lack of sleep and dysfunction.

    I believe it will come for you. Keep faith with me love. We try and wade through it.

    You are good friend to us all.

    Dan / Seattle

  • Thank you 😊 dan and your lovely family too. Trevor says thank you for birthday πŸŽ‰. He enjoyed himself although he did everything, all meals. He saw his son and grandson which was lovely for him. His friend and wife he made meal for. It was good for him as not alot for him last few years. I got through it and enjoyed some of it which is better than none of it. Am pleased 😁 for him. Love to you and your wonderful family. Always Lisa and Trevor. πŸ€—πŸ€—πŸ˜πŸ˜β€οΈβ€οΈπŸŽ‰πŸΎ

  • Lisa-anne

    Family asks what I want for birthday. I say I want to cook for everyone. They frown at me. Tell Trevor I know.

    Dan / S

  • Fortunately Trevor enjoys cooking, experimenting with different spices, herbs and vegetables. As I no longer eat much and taste change, he tried new things out on his family and friends. They really enjoyed it. I had my plain stuff but I'm happy with that. It made a nice change for us to entertain in a small way. Hope you and Andrea are feeling a bit better now. Wishing you all well. πŸ€žπŸ€žπŸ€žπŸ€žπŸ™πŸ™πŸ™

  • My dear Lisa-anne.

    Me too.

    Grilled pork chops and asparagus but forgot zuchinni. When looked for it in fridge, thought it was cucumber. Then first spear of asparagus fell thru grate into fire. But dinner was good and family ate it all.

    Thank you for well wishes. We still here with you.

    Dan / S

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