Imagine

Imagine a normal life.  A normal life filled with normal everyday activities.  Grocery shopping, picking up grandkids from school, cooking, drying your hair, fishing, shopping, eating out, running errands, ironing, brushing your teeth, washing clothes.  Now imagine suddenly not being able to do 95% of those things.  Imagine having no control over your arm, upper body, and head movements.  Imagine movements that will not stop no matter how much you try.  Imagine not being able to sit up for a few minutes, bathe yourself, or brush your teeth without total and complete exhaustion from trying to fight the movements and jerking.  Imagine not being able to fold clothes because your upper body jerks and your arms and hands are uncontrollable.  Imagine having to eat every meal while lying down.  Imagine not being able to walk a few feet without being out of breath and sweating profusely and having involuntary movements that completely knock you off-balance.  Imagine not being able to comfortably enjoy a visit with your family.  A simple visit with your family.  Imagine crying more days than not.  Imagine feeling like you are trapped in your own body.  Imagine not getting one moment of peace or relaxation.  Imagine not being able to do just one thing as you could before your symptoms started.  Imagine feeling like there is no hope for you.  Imagine the emotional turmoil.  Day in and day out for almost eleven months.  Imagine going to doctor after doctor asking for help.  Imagine no one being able to help you time and time again.  Imagine having to wait for months and months.

And even now, knowing you are about to start a treatment program (that is supposed to help you start the recovery process), your emotions are raw and exposed and your bad days outnumber your good ones.  Yes, there is hope around the corner, but your outlook is compromised because of this daily fight with your body and your mind.

This has become my mom's life.  My dad's life.  Our life.

Yes, there is a treatment plan in place and soon she will start it.  We still are without a definitive diagnosis.  All we know is that she has some sort of movement disorder (but it entails so much more).  We don't know why or how it happened.  Might not ever know.  The treatment program will last three weeks.  It will not "fix" her.  It could take many more months, maybe even years, for her to function with some sort of normalcy.

I won't lie.  This has rocked my world.  There's not one minute that passes that this doesn't affect me.  A piece of our life is missing.  Has been missing for many months now.  Heard of the 5 stages of grief?  Well, it isn't just for those coping with the death of a loved one.  It's for those dealing with any kind of loss.  I feel like adding a "Rinse & Repeat" stage.  You see, you don't just go through the stages once.  You go through them over and over.  And you get stuck on certain stages longer than others.  For example, depression and anger have been overextended many times in my case.

My mom has been through hell.  No one can begin to imagine what it's been like for her.  No one should have to experience what she's been through and still going through, and will continue to go through for who knows how long.

I can only hope that our journey and our fight for medical guidance, help, and treatment will help others some day.  I can only pray that the reason for all of this suffering will reveal itself.

It's the little things that get taken for granted

We have been trying for months to get mom's hair cut.  After having to cancel three appointments due to mom's condition and giving her a two inch trim myself a few weeks ago, mom was finally able to get a hair cut today.  My dear friend, Leah, came to my house today on her off day to help us out.  After an hour and a half and stopping for many breaks, mom was able to get a much needed haircut.  Hoping the new cut will be much cooler and manageable for her after rotator cuff surgery tomorrow and during her upcoming three week treatment program at Mayo.

Yet another bump in the road

February 17, 2014
Email to family and friends

Hey all,

It's me again.  I'm not sure if y'all remember, but mom's shoulder began hurting back in September from a fall she had in the shower.  We kind of put it on the back burner due to everything else.  She had an x-ray done in November, but it really didn't show anything.  She finally went to see an orthopedic dr in January.  He put a cortisone shot in it, but it didn't help.  She went for an MRI a week ago but they couldn't do it because of her movements.  She went for a CT with contrast last Friday and they were able to get it done.  They called her today and she has a torn rotator cuff!!  She will go to the dr. this Wednesday to see what he recommends.  I know she will probably need surgery to repair it, but with her movement disorder we are not sure how they will be able to stabilize it afterwards.  Again, prayers please. 

Kim

Another disappointment

February 13, 2014
Email to family and friends

Just talked with Mayo.  Apparently, mom is on a wait list to get into the rehab program.  There are people on the wait list who have been waiting over a year.  I don't think we will have to wait a year, but it could be months. The only way she can get in sooner if someone cancels or drops out of the program.  This information was not given to them or me during the visit on the 4th.  The person I talked with today said that mom could possibly go in March or it could be months from now.  As you can imagine, I am deeply upset about this.  

Mayo visit #4

February 4, 2014
Texts to family and friends

The dr just called. Had me on speaker. Mom and dad in the room with him. He said she is a candidate for his program!!!

They've got to contact her insurance first but he said within the next 3-4 weeks. I stressed we needed it ASAP. He agreed. It's a 3 week program, M-F, 8 am to 4:30 pm.

They are sending a packet of info with them. We will have a lot to figure out but that's the least of my worries.

Kim

An Unexpected return to Mayo for appointment on Feb. 4 without me

February 1, 2013
Email to family and friends

Hey everybody,

Just thought I would update on you on the latest happenings with mom.  The dr. who witnessed mom's episode and called a code for the paramedics to come has been in contact with several times.  She has become sort of an advocate for us!  Finally, we have a voice at Mayo!  She contacted the administrator of neurology for us!  While she was making her contacts, I was in full force making our own before we left on Tuesday.  Of course, she had more pull than me but I wasn't about to leave without trying to do something as well.  Because this has become an emergent situation, mom has another appointment at Mayo THIS Tuesday, Feb. 4 at 10:00 EST!  This will be the most important appointment thus far.  I REALLY wish I could go with her, but I can't.  Dad will be going with her.  They will be leaving on Monday, Feb. 3.  Please say a prayer for smooth travel!  The first time Dad ever drove in Birmingham was when she was at Brookwood Medical just a few weeks ago!  Bless his heart it took him 3 hours to get there from our house!  Yes, I know.  Unbelievable!!  But he didn't get discouraged and he eventually made it!  Brady bought them a GPS this morning and is taking Daddy to Yellow Creek this afternoon for an overnight stay and he will teach him how to use it.  I will be making a long list of notes for him on how to get around the Mayo campus among many, many other things.  It might be quite the list!  

So back to the appointment.  I can't go into to details, but the goal of this appointment is to see if mom is a candidate for a 3 week rehabilitation program only offered at Mayo.  From the standpoint of her neurologist, the former head of the dept of neurology (he's also a movement disorder neurologist reviewed all her records at my request), and the dr. who has become our advocate all agree that this is how we should proceed and that she should be a candidate for this 3 week rehab program.  I will know more details on Tuesday and will let you all know.

Please pray for safe and smooth travels for them.  Please pray that we are close to answers!  I believe in my heart that we are.  

Love to you all,

Kim

Mayo ER, mishaps, and good news

January 27, 2014
Texts to family and friends

Mom had a bad episode at mayo. They called a code on her and now we are in the ER. Please pray

I'm not sure what code it was but the dr came to me and said "I had to call a code on your mom". "She's wheezing, pale, sweating, and jerking violently."  "She's in obvious distress". "She needs medical attention". "They (paramedics) are coming to get her"

Yes. I think so but can't determine a BP which has been a prob since all this started


All vitals seem ok now. On oxygen. Very scary when they called the code and rushed her to the ER. She's jerking really, really bad.


Well, folks. Because all labs are normal and she's not having an "acute problem", they are letting her go. Unbelievable. Unbelievable.  I have no words.


The dr said to her "you are stumping us". So even mayo doesn't know.


Our story is so crazy unbelievable I'm scared to tell anyone.


Our morning started bad to begin with. Got here at 7am. Told there had been no pre-certification done yet on the test she was supposed to have at 7:50 so they wanted us to reschedule because BC wasn't open yet and couldn't get the precert. I was mad and went to patient affairs desk to report it. The lady there looked into it and found out there was no precert needed!!


So we had already been through that this morning before the ER stuff.

January 28, 2013
Texts to family and friends

Today is going a little better.  I guess I could say a lot better. What I haven't been able to tell anyone because mom didn't want me to tell is that we had a lung cancer scare on our nov mayo trip. So yes, a lung cancer scare on top of everything!  Part of this trip was a repeat ct chest and to see the pulmonologist.  Just saw the pulmonologist and her lungs are ok. No cancer!  Even the spots are gone and the prominent lymph node is no longer prominent!  Lungs are in the clear!


And as crazy as it sounds, there is a medical link between lung cancer and movement disorders. So needless to say it was a real concern of ours.

Kim

Mayo trip #3 (appointments January 27-28)

On January 26, we headed back to Mayo for another set of appointments.  Mom had some tests scheduled and an appointment scheduled to see a pulmonologist.  The pulmonologist appointment was to review a repeat CT chest that had been ordered because of abnormalities found during the October Mayo visit.

Brookwood Medical ER (January 6, 2014) and hospital admittance (January 6-8, 2014)

January 6, 2014
Text to family and friends

FYI:  mom has been admitted to brookwood medical. Running tests and consulting neuro. Hoping she only has to stay until tomorrow but for answers.  Her symptoms have progressed tremendously (had to get a wheelchair today) and could not get help from drs in Tusc today.
Kim


January 7, 2014
Text to family and friends

Mom will be staying another night at the hospital. No real news at this point. Were able to finally get the MRI head done today. Jerking was so bad yesterday they could not get it even after 3 injections of Ativan.  They started her on a new drug which has her knocked out right now so that along with an injection of Ativan they were able to get the MRI. No results yet though.
Kim


January 9, 2014
Text to family and friends

They discharged mom last night around 8 (actually it was around 10:30pm). Dr said there was nothing else he could do. So sad and so unbelievable. We were hoping for some relief for her until she sees the mayo neuro in March but looks like that's not going to happen.  She can't tolerate the new drug they tried.  She's been seen by 9 neurologists in the last 8 months. Looks like someone could do something. Please pray for some relief for her symptoms. Please pray she will start eating again (she's lost 18 pounds in 6 weeks) so she will have the strength she needs. Please pray for her to regain hope and faith that she will get the help she needs and eventually get better.
Kim

Mom's 2nd round of Mayo appointments (November 18-19, 2013)

November 25, 2013
Email sent to family and friends

Hello everyone,

Yep.  That's exactly how I feel, especially after this last trip to Mayo.  

I never sent out an update regarding mom's first visit to Mayo, but you might remember the lengthy text I sent.  I will do a little recap.  Mom's very first appointment at Mayo was with a general internal medicine (GIM) doctor to determine her needs and to schedule tests, labs, imaging, appts, etc.  The GIM dr. was a very pleasant lady and seemed to grasp mom's condition and needs.  The goal was for the next two days to be spent getting as much info as possible gathered for the neurology appt.  For various reasons, not all of the tests could be scheduled within that time frame.  The neurologist evaluated her physically and mentally for a grueling two hours. It was one of the most thorough neuro exams I have ever seen and I've seen quite a few since May.  He also videoed part of her exam.  But at the end, he really couldn't tell us anything.  He said it was hard to tell because of the meds (which were all prescribed by neurologists to suppress the movements/myoclonus) and the possible side effects of those meds.  He wanted her to come off the meds and come back after a few months for additional testing.  To completely get off the meds, it takes time.  Mom is on three very strong meds and withdrawal symptoms were imminent.  She would have to slowly come off of each med one med at a time.  This in all likelihood would take her approximately 6-8 weeks.  The neuro also recommended water therapy for her.
We left our first Mayo visit a little disappointed that we didn't get all the testing done and that we didn't know much more than when we came, but we had a plan.  

Two days after we got back, she had a follow up with her Tusc. neuro.  After relaying the Mayo neuro recommendations to him, he referred her for the water therapy.  So while she was coming off meds and having withdrawal symptoms, we got her started with some physical therapy and water therapy.  We were going twice a week up until we left for the 2nd Mayo trip.  Might not have been the best of timing,  but looking back I think it helped her work through some of the withdrawal symptoms.  Also, shortly after we returned from Mayo, I was able to schedule the rest of the Mayo testing and a follow up visit with the GIM dr. for Nov. 18-19.  So in about 3 1/2 weeks we would be returning to Mayo.

During the 3 1/2 week wait to get back to Mayo, Mom was able to completely get off one med and had significantly decreased another.  Every few days she would experience withdrawal and it would seem like a set back, but she would work through it.  

Fast forward to November 14, a few days before we were to leave for Mayo.  I called Mayo to see if the MRI's had been approved and rescheduled.  They were supposed to let me know, but I had not heard from them.  It was then that I found out that her GIM dr. she was to be following up with on Nov. 19, was no longer at Mayo!  Yep!  The first we had heard about this.  I asked if she would be seeing another dr.  They had to look into it and call me back!  So they did call me back and they put her in with another dr.  This should have been omen #1.  The MRI’s not getting approved was omen #2.  We left for Mayo on Sunday, the 17.  Mom had a stomach bug on the way---omen #3.  I was driving and praying I wouldn’t get it, too. I had no idea how I was going to take care of her and myself, but thank goodness, I didn’t get it.   We got to Jacksonville Sunday night, got a good night’s rest, and arrived at Mayo by 12:15 for her scheduled spinal tap.  She was prepped and ready when the radiologist came out to tell me he had talked with the neurologist and that the neurologist had deemed the spinal tap “not medically necessary”.  In other words, she would not be having the spinal tap done!  I was speechless.  Well, not really.  I had a WHOLE LOT to say!  The neurologist wasn’t the one who ordered the spinal tap in the beginning, so I could not understand why he had control over it, nor did I understand how mom could have even been scheduled for it if this was the case!  After much discussion, the radiologist said he would be happy to do the spinal tap if her GIM dr, (the dr. who mom would be seeing for the first time the next day) would approve it.  Not getting the spinal tap was a real let down because we felt like it was the one test no one had done yet although several doctors had talked of it.   And did I mention she had the bloodwork done for the spinal tap??  Yep, stuck for nothing.

The next day we had to be at the hospital at 7:30 for two tests.  The registration desk was backed up and made us late to our appt.  Because walking gives her out, Mom was drenched with sweat and so fatigued I had to exchange her walker for a wheelchair.  Since we were late to the test (we weren’t the only ones), the tech was rude and said she could only do a partial test.  I got upset and tried to explain, but there wasn’t a thing I could do.   Mom said the tech continued to be rude throughout the appt so I was sure to file a complaint later that day.  I had been pushed to my limit.  They took mom from her first test straight to her second test so I didn’t see her again for about three hours.  When she was done, she was so worn out I took her the hotel to rest before her appt with the new GIM dr.  Finally, we saw the new GIM dr. who seemed very nice, but we really wished it could have been the original GIM dr.  Basically, the tests that had been completed earlier in the day were normal and the new GIM would not “go over a specialist’s head” and re-order the spinal tap.  So what she was saying was that they would have done the spinal tap had it been scheduled before the neurologist saw mom.  But they let mom get a $1200 test done that was NOT covered by insurance and that was NOT recommended by the specialist (neurologist).   As you can imagine, by this point, mom and I were completely and utterly exhausted and beside ourselves.  

What's happening now:  Mom is completely off the second med.  One more med to go!  We don't go back to Mayo until Jan 27-28.  Mom will complete more testing at that time.  She will continue to have regular appointments with her Tusc neuro from now until then.  Other than that, we wait.  Just wait.  It's so hard to believe that in one more week it will be 7 months since this all started.  That's very depressing to me.  I'm trying to stay positive and not let it consume me, but it does.  Last week was a horrible week for me.  This week I'm trying to refocus myself on the things I can control.  Especially this week, I'm reminding myself of all the things I can be thankful for and all the blessings in my life.  

I know some of you have asked me to let you know if there's anything I need.  Here's what I need:  for my mom to stay motivated and know that people are praying for her and thinking of her.  If you can, please send a little note or card to her.  It can be anything.  A post-it note in an envelope or a cheap card.  Just something.  

Dianne Knight

1297 Hwy 13 S

Berry, AL 35546

If you've made it this far, thank you for reading this very long update and email about my mother and our journey over the past month.  

We still need your prayers.  For answers.  For motivation.  For positive thoughts.  For comfort while coming off the meds.  For patience.  For faith.

Love to you all,

Kim

11/26/2013
addition to email above

I have one more thing:  I wanted some clarification on a test and had left a message for the GIM dr.  I hadn't heard back so I sent an email.  I received a response this morning.  The response from the dr was that "her time did not allow for discussing test results over the phone" and that she would be "happy to see us again to discuss the results".  And we are, umm, only 500 miles away.

Heading home from Mayo (10/26/13)

October 26, 2013
Facebook post

After 3 days of appointments and tests, mom and I are heading home. We are still awaiting some test results. She had one of the most thorough neurological exams yesterday I've ever seen (and I've seen a bunch of these in the past 5 months!). The neurologist does not have a diagnosis for her at this time. She does have myoclonus but he said it isn't classic myoclonus, and she has some other abnormal movements as well. He needs her to come off of the medications that were prescribed for the jerking and movements over the past few months and then she will need to come back to Mayo for follow up. Coming off these medications is going to be a very slow process because of the withdrawal symptoms that can occur. Mom is frightful of stopping these meds because she's afraid the jerking will be worse. So in a nutshell, we are starting over. New doctors, new plan, etc., BUT I feel it will be worth it in the end. She has a team of doctors at Mayo who are working together and are going to see her through this. The neurologist said he does feel like he can get her better and that is what's important. Thank you for all the comments, texts, calls, and prayers! A special thanks to my closest friends who have been in constant contact with me throughout this trip--you have lifted me up so many times!

Mom's Mayo Neurology Appointment (10/25/13)

10/25/13
Text sent to family and friends

Just giving a quick update. It's been a very, very stressful day. The neurology appt was overwhelming. There's no diagnosis from neurologist. He only diagnoses when he's 95% sure. He needs to see her movements without all the strong meds so the plan is to wean her off the meds which is going to take 2-3 months. He will be monitoring her progress with our Tusc neurologist. We will be coming back to mayo in the next couple of months. Chest ct was ordered because of something that showed up on chest x ray. The chest ct was done by 3:30 today so we haven't heard results.  I will try to send a more detailed email later but like I said it's been a very stressful day.

Well, I guess that was pretty darn detailed. Anyway, I will add one more thing the neurologist asked to video her movements and we agreed. I think she's blown his mind as well as every other neurologist BUT he's willing to monitor her and see us through to get her better. That's the Mayo difference.

On our way to Mayo in Jacksonville, Florida (10/23/13)

October 23, 2013
Facebook post 

Mom and I are en route to Mayo Clinic. Her first appointment is this afternoon at 2:00 CST. We are hopeful and prayerful for a complete and thorough work up, additional answers regarding her condition, and better treatment options. We've had this appointment for 3 months and are so thankful we didn't cancel it after going to Cleveland. Her meds and treatment plan from the Cleveland Clinic have provided little to no improvement over the last 7 weeks. The side effects from the meds are almost as intolerable as this horrible disorder that has taken over her body. My mom deserves so much more. She's only 57 and has many so many more memories to make with us. Please keep her in your thoughts and prayers.

Mom's 2nd rehab appointment (9/26/13)

10/5/2013
Email sent to family and friends

Hey all,

Sorry I haven't updated since the initial rehab dr's appt.  The second rehab dr's appt went well.  The dr. was able to answer a lot of questions for me.  He sat and talked with us for a long time.  He talked with us as I felt like any and every doctor should and like no other dr has.  So the entire experience was very different and very refreshing.  So I've spent most of the time between that appt. and now thinking about our options.  After a lot of thought and consideration and worry, we've decided to keep the Mayo appt.  I won't lie.  It's been so very stressful, but I feel so much better now that the decision has been made to keep the appointment and not postpone it.  The next available appt would be in January.  We wouldn't be at peace with ourselves if we didn't go as scheduled.  If there is one sliver of hope that Mayo can help her, then we need to go on the 23rd and not wait.  

Mom's condition:  It's hard to tell if she's any better with the new medication.  She continues to have very bad days.  SInce the beginning, it's been very hard to describe her symptoms.  She still has the jerking in her upper body, but there's many other symptoms.  If you haven't seen her, you won't understand.  What I can say that might help is that she pretty much has no quality of life right now.  Life is a complete struggle for her.  Walking to the bathroom is a struggle.  Eating is a struggle.  Sitting up is a struggle.  Holding the newspaper is a struggle.  All physical activity, fatigues her within seconds.  Sometimes she's so out of breath she can barely talk.  It is agonizing to watch her and it saddens me deeply.  

It has not dampened her determination.  Although I was almost certain she wouldn't make it to John Brady's grandparent's day lunch, but she did.  John Brady's teacher and I were able to make some special accommodations for her.  She made it, but it wasn't without sheer determination on her part.  And seeing John Brady's eyes light up when we brought her into his room, I knew exactly what the driving force behind her determination was.

Mom's first appointment at Mayo is on October 23.  Her other two appointments are on October 25.  So we know we will be there Oct. 23-25, but it could be longer.  

Again, thank you for all the prayers.  Please pray for her strength and endurance as she fights this horrible battle each and every day.  Also, please pray for strength for my dad.  He's been amazing throughout this, but I know he's wearing thin.  Please pray for me as I try to help mom and maintain a normal as possible routine for my party of five.  Please pray for me to find ways to decompress and deal with the stress of it all.  Please pray for the Mayo doctors for knowledge and insight into this terrible condition.  

Love to you all,

Kim

Mom's Rehab Appointment (9/20/2013)

9/22/2013
Email sent to family and friends

Hi everyone,

Mom had an appointment with a rehab dr on Friday.  Things didn't quite go as we thought they would.  First off, she was having a very, very bad day.  I had already called both her doctors (Tusc and Cleveland) and given her a Valium on our way to the appointment.  So the day really started out bad from the beginning.  These really bad spells have been more numerous since getting back from Cleveland.  We don't know if her symptoms are just getting worse or if the medicine just isn't working.  At the rehab dr. appt, it was our understanding this doctor would "prescribe a therapy regimen" for mom based on the Cleveland Clinic Dr's orders.  Well, the orders from Cleveland Clinic were a joke.  The orders read "treat spinal myoclonus".  Really??  That's the special therapy plan??  My mouth fell to the floor when the nurse read the fax from Cleveland Clinic aloud to us.  When we saw the doctor, he wanted to know mom's complete story from the beginning.  This doctor asked if we had considered Mayo Clinic and I said we have an appointment in October.  (I had been wondering what to do about the Mayo appt and was to discuss it with mom on this very day)  This doctor did his residency at Mayo so that's the good part.  He specializes in treatment of the spine, musculoskeletal, and peripheral nerve disorders.  He has a connection with the Mayo neurologists which is the best part of all.  This doctor has requested ALL of mom's records so that he can be as thorough as possible and wants to see us back next week.  This dr said he isn't "throwing stones" at the Cleveland Clinic dr, but needs to read and understand where the Cleveland Clinc dr is coming from.  I was in such shock during this appointment I couldn't think straight.  I did manage to ask him specifically if physical therapy would help her and he said NO.  Again, my mouth fell to the floor.  I'm still trying to process this all.  I'm not sure what to think at this point.  I do know we are going back to see this dr. next Thursday and we are hoping and praying he can help us or get us to someone at Mayo who can.  

Mom is now on Valium as needed to get through the really bad days.  She's fell twice in the last two weeks.  Once was in the shower and she couldn't get herself out--she had to call dad.  She's already using a walker some at home, but now is growing more and more dependent on it.  We are currently looking for a wheelchair to carry with us to appointments.  She had to use one in Cleveland and needs to use one for appointments here as well.  Most medical offices have them available, but I feel better having one of our own.  Because of my FB posts, mom has reconnected with several friends which has been wonderful and one of my friends cooked for mom and dad last week.  Mom's sister and brother have been visiting and helping with transportation (getting her to me for appointments and getting her back home when dad has to work) and they have been providing some meals.  She's also had some neighbors visit and bring food.  We are so grateful for this help.  I've been trying to help clean their house when I can, but I'm just not able to do it as often as I would like or as often as it needs, so I think dad is now looking to hire someone to clean.  If anyone can recommend a good, honest person for this, please let me know.

As of right now, we will see the rehab dr next Thursday at 3:30, and as of right now, we will be going to Mayo in October.  We most likely will be gone from Oct. 22 - Oct. 25.  It could be longer.  We won't know until we get there.

Please continue to keep mom and dad in your prayers.  Please say a little prayer for me for guidance to make the right decisions during this difficult time.

Love to all,

Kim

Update to the 9/3/2013 Cleveland Clinic visit

9/7/2013
Email sent to family and friends 

Hi everyone,

Just wanted to update you all on the latest.  The EMG (nerve conduction test) was normal, but the Dr. said he this does not change his diagnosis of Spinal Myoclonus.  The blood work checking for copper was normal so that pretty much rules out Wilson's Disease.  We don't have the urine collection test results yet.  

After talking with her Dr. again on Thursday before flying home, I do have a little more information.  Her dr. sees 1-2 cases a month of this condition so I feel very confident that we are in the right hands (finally!)  I asked him about the over all prognosis of this condition.  He told me with therapy, it will be at least 16-18 months before we see significant improvement.  The idea of the therapy is for her body to learn to suppress the jerking and the movements and this takes a very long time.  BUT it can be done and that's what I have to keep reminding myself and my mom (and my dad, too).  The Dr. said she might not ever drive again (I haven't told her this), but that hopefully, she will be able to regain most of her normal everyday functions.  

I've found a good rehab dr. in B'ham.  Her appt is on Sept. 20.  Her Cleveland Clinic dr. will be faxing orders to the rehab dr.  

Now, as far as what to tell people when they ask about her condition.  Joy brought this up to me today so thought I would address that here.  I've been very leery of what I put on FB and I'm sure you all understand.  I think it is fine to tell them it's Spinal Myoclonus or just that the staph infection caused lesions on her spinal cord or that it's a spinal cord prob caused by the staph infection that causes uncontrollable jerking and abnormal movements.  It's very, very rare.  There's no real cure.  It's managed by drugs and rehab.  The symptoms are made worse by fatigue and emotional stress.  When she gets hot, her symptoms seem to skyrocket.

Mom's condition makes for some really long days for her and for dad so please keep them in your prayers.  She is easily fatigued and can only walk a few feet without resting.  She is only without the jerking when she lies down for a period of time.  The jerking keeps her from most of her daily living activities so you can imagine how hard this has been and will continue to be for at least the next 16-18 months.  I just hope she can make small improvements along the way to keep her motivation and spirits up.  We all need to see improvements being made, even if they are small.  It's been an emotional roller coaster for us all.  

She has an appt with her Tusc neuro next Thurs. and I will be pointing out the areas of concern on her upper spinal cord.  Hopefully, the neurosurgeon there (he's the one who did her spine surgery when she had staph) will be able to look at the scans and give us his opinion.  If there is any possibility her spinal cord is being compressed in the neck area, I am hoping he will want to address it.  

We really appreciate your prayers and your support.  It means so very much.

Love you all,

Kim

Cleveland Clinic visit

9/3/13 

Email to family and friends regarding Cleveland Clinic visit

Well, I'm not sure where to start so I will just jump right in.  I do need to share this little part about the wheelchair service guy at the airport.  While talking to him, we found out he was originally from Cleveland!  Had lived there for 36 years before moving to Alabama.  What are the chances of that??  He was so nice, and he all but promised that we would be taken care of at Cleveland Clinic.  He really was the little angel we needed before departing on this adventure.  

Anyway, back to today's visit.  First, the doctor feels like she has Spinal Myoclonus.  This is basically jerking caused by nerve damage in the spine and he thinks this is a result of the staph infection she had five years ago.  Apparently, there was damage there we didn't know about, and it sort of triggered other nerve damage ultimately presenting itself in various ways until it settled into full blown shoulder jerking and involuntary arm and trunk movements.  That the doctor thinks it's spinal myoclonus is in itself very ironic because this is exactly what I came up with back when she was hospitalized in May.  I thought it might have had something to do with the staph infection she had 5 years ago so I had been googling myoclonus (a type of jerking) together with the infection from 5 years ago and came up with spinal myoclonus.  I had even written it down on a piece of paper for dad to show it to the doctors if I wasn't there when they came around.  We couldn't get anyone to listen to us when we mentioned it.  Anyway, the dr. here significantly increased a medication she's taken for many, many years and he added another drug that treats muscle spasms due to spinal cord damage.  He also ordered an EMG test.  It's a comprehensive nerve conduction test.  This basically delivers an electrical stimulation through a needle that is inserted in various places on her body.  

Second, the doctor wants to rule out Wilson's Disease.  It's a condition where the body does not properly rid itself of copper.  She does have a some of the symptoms of this, but there's many symptoms she doesn't have.  Blood work and a 24 hour urine collection is needed.  We did the blood work and the EMG today in the main hospital.  Lots of fun shuttling around this huge campus--172 acres per the shuttle driver.  But at least it is a very nice hospital with lots of nice and helpful people!  

Third, the doctor recommended she see a rehabilitative doctor and start some form of rehabilitation.  We are looking for one.  

Fourth, while looking at a MRI scan of her neck, he found a questionable area of concern on her spine.  It looks like it could be compressed and could be causing some of the symptoms.  We will talk to her Tusc neurology group to see what they think.  

Unfortunately, there is no cure for spinal myoclonus.  It's something she will always have, but hopefully, it will be manageable.  It's treated with medication and rehab.  After a while the medications lose their effectiveness and her meds will have to be changed.  

As you know, not having a cure or a fix isn't exactly what we wanted to hear, but we trust that we came to the right place and that she was seen by a competent doctor.  The neurology department here was ranked #5 in the nation last year.  

So what's next?  We start collecting urine for 24 hours tomorrow morning.  Sounds glamorous, huh?  We will return the urine specimen to the lab Thursday morning.  Our flight home is at 1:00 Thursday.  Under the direction of this doctor, mom will be managed by her Tuscaloosa neurologist.  

It's already been a life-altering experience for mom and dad, and for us, too.  She has a long road ahead of her.  I keep praying she continues to be the fighter she's always been.  

I'm sorry this is such a long email, but her condition is very involved and there's no short answers as to how the visit went today.  

Thanks for keeping her in your prayers.

I love you all,

Kim

We leave tomorrow

Our flight to Cleveland, Ohio is tomorrow.  I've been trying to get everything in order.  I mean everything.  From organizing mom's records to washing every stitch of dirty laundry in our house to making sure there's enough toilet paper in the bathrooms.  Yeah, I'm a tad OCD, but I just want my family taken care of while I'm away.  Plus, the tables are turned this time.  I'm usually the one staying home with the kids.  And it's not that I don't trust that Brady can do this.  He can and has before.  He's quite amazing actually, but I wouldn't be myself if I didn't worry.  Just a little.  :)

So tomorrow is going to be such a long, long day, especially for mom.  It's very difficult for her to sit up for even a few minutes much less driving to the airport, waiting at the airport, connecting in Atlanta, landing, getting our luggage, getting the rental car, and driving to our hotel tomorrow night.  So my prayers for tomorrow specifically are for my mom to have the energy needed to sustain our travels.

I already did

I went to check on my 6th grader, Abby, tonight to make sure she was all tucked in and hopefully, on her way to a good night's rest after a stressful day as a new middle schooler.  When she said mama, I could tell by her voice she wasn't ok.  She grabbed me around my neck and sobbingly asked when nanny was going to get better.  And although this question has been asked many, many times by my precious babies since May, it never gets any easier to answer.  In fact, it just gets more difficult.  I told Abby how much hope we have for this new appointment with the doctor at the Cleveland Clinic.  I told her she can't give up hope and that we can't stop believing that Nanny will get better and she needed to say a prayer for her.  Abby said I already did.  

Cleveland, Ohio here we come!

I had took mom to yet another doctor last Friday who gave us his opinion and some tests he thought should be done.  Armed with that info, we went to her recheck appointment with her Tuscaloosa neurologist this morning.  Her symptoms have been getting worse and no relief seemed to be in sight.  Her doctors have tried so many drugs, but nothing has alleviated her symptoms.  Mom's quality of life is at an all time low right now.  And although we have an appointment at Mayo, we haven't been sure how she was going to make it until Oct. 23.  After discussing the recommendations from the other physician with her Tusc neuro, we were completely and utterly deflated when he didn't agree with any of the recommendations.  Tears started flowing.  Tissue handed out.  After discussing how unsatisfied with UAB Neurology and how mom needed help as soon as possible, he asked us if we would like for him to refer us to the Cleveland Clinic in Ohio or Mayo clinic.  We told him about her appointment at Mayo on Oct. 23 and how we couldn't get one any sooner.  He talked of the good results he had gotten from the Cleveland Clinic recently.  We told him we would go where he recommended and could get an appointment the soonest.  Mom's neuro said he would have his chief nurse work on getting us the appointment and let us know something no later than tomorrow.  He is also increasing one of mom's meds and starting a new one.  We left the appointment with mixed feelings.  Defeated.  Sad.  Frustrated.  Hopeful, but cautious.

I had to look twice when the neurologist's name popped up on my phone.  His nurse was calling to tell me she had mom an appointment with the Cleveland Clinic for Sept. 3!!  I'm still in shock, but so, so relieved.  Three weeks is a whole lot better than ten weeks.  Yes, we will certainly take that appointment.  In the meantime we are hoping and praying the next three weeks are manageable for mom.  Praying for her endurance and strength (and my dad's) to hang on a little longer.  Praying for my party of five to get through this without too many bumps, bruises, and scars along the way.

In an attempt to help his Nanny, my sweet-hearted, precious souled son, has been doing his own "research".  Oh, how this broke my heart when I saw it.  We try so hard to shield them from these terrible trials of life, but they know when the ones they love are suffering.