Hi Beba Violet,

I don't think we have communicated before; SherryO, diagnosed with MS Sept. 2005 at age 48,  MRI & Review of past medical history indicates I've probably had it for more than 30 years, teenaged boys, married 26yrs.; worked as an Animal Health Technician for 3 years immediately after graduating from college; married and moved to a place I will always think of as home; started to do some volunteer work which, led to a job in the social service field; continued my education taking relavent courses for this new area of work that I absolutely loved.  The agency's mission was to provide services to help seniors or persons living with a disability.; I became a Case manager which required me to visit client's homes to do a needs assessment and determine how our agency could help or if referrals to other agencies was also needed.  I had a staff of 25 - 30 that would help the client as determined by the initial assessment.  At this time we mainly provided services that dealt with care of the environment, yard work, painting, housework, shopping, even washing walls.

You're wondering why is she telling me all this stuff when my issue is memory loss.  I also suffer with loss of cognitive functions such as comprehension, focusing and memory loss.  This was and still is the most difficult of my symptoms that I have to come to terms with;  the MRI of my brain shows many lesions, it looks like it could light a small town;  my memory was my greatest gift.  I never wrote anything down; that was problematic when my desk had piles of client files needing to have records of visits or phone calls,etc. detailed in their file.  I would sit for days at my desk putting in writing what was stored in my brain; at the same time I would be scheduling staff; fire fighting minor issues "she didn't wipe the top of the fridge off", did you ask her to do that?", "well no but, if she was wiping the front, I just assumed she'd wipe the top"; I would remind the client that the Home Helper was only scheduled for 2 hours.  "If you have some additional jobs we could do one of a few solutions: she could either skip some of the regular tasks and do these occaisional tasks or I could see if more time was available on her schedule, or I could arrange to send 2 people for two hours each to complete extra tasks".  "I like Sue so, I would like to have her come for some extra time".  "I will check her schedule, I'm sure we can accomodate your request.  I will look at her schedule and, call you back when I have worked it out".  "Thank you". Problem solved.  I was changing the schedule as we spoke but, I has to phone one of Sue's other clients to ask if she would mind if a) Sue can come a couple hours later on her next visit; b) I could ask if Sue could come in the morning for one time or c) offer her same time but different day which, would mean calling another client to see is she would mind switching her day/time?; I think you get an idea of the role my memory played with this job; Now think about similar situations with the 25-30 staff who looked after 200 or more clients.  By this time I was the Program Manager with all that entailed but still doing my previous duties.  I often had clients who called to chat on an almost scheduled basis.  They didn't talk long but, to me it was her way of letting me know she was okay or she wouldn't come right out and ask but, I knew there was something needed so, I would ask if there was something I could do for her?  It might be picking something up at the store, I would do it on my way home for her;  I would know if T didn't get a call and, would call her, if she didn't answer, I would go to her house as she may be out in the garden, not there, I would then call one of the emergency contact #'s each client was required to provide, if that person didn.t know, I would check with some neighbours, call her doctor to see if she had an appoint, "yes she was there".  I would follow through looking for her until I knew she was okay.  This has inckuded calling 911 to make sure she that if she had a fall but, could not call for help.  Emerg. Service providers can usually find a way to enter a home without causing too much damage to the home.  Yes, we have found people who did need medical help.  When she was home and doing well, I would talk to her about how she could avoid a similar incident in the future.  I had about 10 clients that "checked in" with me and if I hadn't received a call, I would repeat the process to whatever end was required to make sure they were okay or get the help they required.  Again, memory played a huge role, I would remember places she shopped, or neighbours she knew.  The info was gained in an informal conversation and, I would remember and utilize the info when needed.

The fact that I still recall that information tells how much I rely on my long-term memory.  This would include my ability to continue driving.  Information I was told ten minutes ago, may or may not come back.  Those who know me well, will let me know if I've asked the question already or related info to them; they know it is okay to finish a thought or tell me the word  I am having trouble finding to be able to finish my sentence, etc.  They will refocus me and let me know what we were talking about.  Something will catch my attention and, the task that I had been involved with is completely gone.  I can no longer read books that have more than 2 or 3 characters.  I can't remember their role in the book.  I also can't do tasks that require me to concentrate, for long periods.  I have to stop & rest or do something else.  I've developed a system using post notes and different colour page markers or dry markers for the giant white board in our kitchen.  Each family member has a different colour marker.  They can write something that they had requested me to do or what their schedules are so, I can just look at the board.

I am absolutely grieving the loss of those functions.  I am unable to work because of those losses.  I have a social worker who comes once a week to help me with the grieving process and, try to find new ways to recall important info.  I have a note book to write things down but, if I don't remember that I was given the info, I won't think to look in my book.  By the way, my notebook has a big label on the front that says, "Sherry's Brain" & my phone number.  I get calls regularly telling me to come pick up my brain as I forgot it someplace.

I don't suffer from migraines but, I can empathise with you as I had a brain hemorrhage.  The pain was so intense, the doctor was giving me demoral injections and a muscle relaxant to ease the pain somewhat.  As long as I kept my head in one position, the pain was more tolerable,  When I was able to sleep, I got some respite.  I never wanted to wake up.  I couldn't even read to my boys who were 1 & 3 @ the time.  I was blessed with wonderful people who were available to help with anytime or anything.  I took people up on their offers for help.   It took 3 mos. to determine the cause & the treatment was simply a diuretic.  The cause, that one in a million chance that this side effect will occur!  I had been in the hospital to receive steroids given IV to get my ulcerative colitis under control.  I had two units of blood earlier in the week, then the steroids were started,  I was sitting on the bed eating ny supper and a searing pain shot up my spine and I passed out.  Fortunately, the person in the bed beside me rang for help.  I wasn't out long but, I had a headache that I assume would be close to the pain you experience with your migraines.  My GP was in the hosp. & ordered demerol.  When I awoke the next morning, I felt fine.  A Neuro came to see me and said he could do a spinal tap but, I didn't see tthe need as the headache was gone.  The next night the same pain up the spine and that intense pain with an added issue, my bood pressure wae at stroke level.  I recall asking them to call my husband.  No one did.  He had no idea of the incident until he came to see me after work.  The drugs kept me floating in & out of consciousness.  By the end of the second week, I had lost 20lbs (Idon't recommend this as a weight loss method), I could not walk, I had to lay in my soiled bed for long periods of time, on the Fri. of the 2nd week I made the decision to leave the hospital against my doctor's recommendation.  I honestly felt that if I stayed, I would die.  Homecare was ordered and my husband wheeled me to the car and had to pick me up put me in the car and, carry me in to the house.  Doctor came & gave me a shot of demerol.  My husband did not allow me to lie in a soiled bed.  My babies went to stay with my brother & family.

Ulcerative colitis as bad as ever, the big gun came out, prednisone and for a regular med. I was started on 40mg/day.  We went to get the boys, my one year old didn't even know me, I was crushed.  The 3 year old wasn;t letting me out of his sight.  We went to my mother's which was a 300km drive.  Drugs helped.  For awhile I sat between the boys car seats so I could be close to them.  My youngest was not making strange with me anymore.  One good thing.  Stayed at my mother's for a couple of weeks but, I was homesick and, missed my husband.  Support group sprung into action.  Two CAT scans and many blood test and, still no answer.  The Neuro was going to  dx the condition as migraine and was putting together some info for me.  I said it's not a migraine, even the pain from migraines goes away until the next attack.  My mother suffered with them since she was 18.  He had a look in my eyes and, saw the blood that I could feel sloshing around in my head. No one was able to explain why it wasn't apparent.  A spinal tap the next day confirmed the diagnosis of a condition ot seen very often pseudo tumour cyberia.  I then became a spectacle as most doctors never see it and, wanted a look.  I was okay, normally the procedure would have made the pain worse but, because the pressure caused by the blood, I actually was pain free for a while as some of the pressure was released.  Normally. pressure of the spinal fluid becomes high and, causes terrible headaches.  

I realize this probably doesn't help much.  I wanted to let you know you are not alone.  I feel your loss, I live from my long-term memory.  I worry the day will come when my long-term memory is no longer relevant and, the issues with the short-term will worsen and I will have a brain that is empty, not allowing me to retain the knowledge that allows me to function.  

I am going to do everything I can to keep my brain active.  I'm involved with the local chapter as member of the Board of Directors; speak to young people about the bullying issue and, I'm in the process of starting a non-profit agency that will collect as many books as possible for children of pre-school age up to gr. 6.  These books are for children who do not have their own books.  Every child should have their own books to read as often as they would like.  For the preschoolers, hopefully this will be the catalyst that allows their parents have books in the house to read to their children & possibly start them learning to read.  If you reach 16 yrs. of age and cannot read, what or where is your motivation to keep trying.  Chances are these teens will continue to live on social assistance, hang out with others like yourself.  Drugs & petty crimes, pregnant 14 yr. old girls who think if they have your baby,  you will love them and want to form the family they are so desperately looking for.  The poverty cycle continues.  Education is the only way to break the cycle.

I am partnering with an organization that is reaching out to those teens who have struggled with school and, they do not have anyone at home who is able to help nor do they know how to support & encourage there children.  Corporations have donated computers, books, everything to help with the learning process.  Community volunteers step up to mentor these teens.  Knowing not all children learn the same, the goal is to discover what works for each student and then start building on their new skills as the are aquired; how to use them to process information that will come in different ways.  Support & encourage, help them see that they are very capable of finishing & graduating from high school.  Allow them to dream and then watch it  happen.  They will know they matter and, despite a bumpy road, they can go on to learn skills that will allow them to enter the world of the employed.  Does not matter what the job is or if you were able to be hired because you have finished your apprenticeship and have learned a trade, attended college to be able to expand those artistic gifts you discovered while learning about your self worth, perhaps in the field of graphic arts or maybe you discovered your gift of being able to teach others what you have learned, maybe social work, psychology or teaching are in your future.  Always DREAM BIG!  It doesn't cost anything to dream.

My dream is to help in getting a bookbank off the ground.  Involve as much of the community as possible and, maybe we will be providing the tools that will allow you to practice the literacy skills learned at school.  The love of reading and books is a wonderful gift to give the young people in the community that would not be there for them.  Get kids excited about all the things  they will be able to learn and do when they know how to read.

I will pray that you will find the hope you need to fight this disease until a cure is found.  Stem cell( harvested from your own body) ,