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
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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