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
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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.

3 good days

Amazingly, mom had 3 "good" days.  Good = less jerking and much better balance.  This happened on Wednesday.  When mom showed dad how much better she could walk, he cried.  Just the day before she was struggling to walk.  She has only had one other good day happened since the beginning of May.  Knowing this we tried to not get too excited, but in anticipation that it might last longer, Dad called me to see if they could take the kids to Yellow Creek for an overnight trip.  The kids haven't gotten to stay overnight with my mom since this started and she has missed them so much, so of course, I said yes.  On Thursday Dad ran around getting all the food, snacks, cooler, drinks, ice, etc.  He did it all.  I met them with the kids and off they went.  Mom had an amazing time!  If you've ever been around my parents when they are with their grandchildren, they ooze with pure enjoyment from just being with them!  My kids are their world and it shows on their face, in their voice, and in their actions.

Brady and I spent the next afternoon with them at Yellow Creek.  Mom was still doing good.  I COULD NOT believe my eyes when we arrived!  Of course, she was tired, , but she still had a smile on her face.  I'm sure Dad was beyond exhausted.  He not only took care of the kids and mom by himself, but he cooked, cleaned, and played with the kids in the water the whole time!  Mom and Dad couldn't wait to tell us how wonderful the kids had been and how much the kids had helped them with preparing food, carrying and setting up the umbrella and stand, applying sunscreen, washing dishes, etc.  And of course, the kids had been very entertaining!  :)  One story in particular they had to tell us about was something that happened at bedtime.  Mom said she was tucking them in for the night when John Brady came to her, took her by the hand, and told her she needed her rest and needed to go to bed.  John Brady took mom by the hand and helped her all the way to her bed.  And then of course, he got in bed with her and talked her ears off until he finally fell asleep!  John Brady was taking care of his Nanny.  Bless his sweet heart.  He has always been a Nanny's boy.  I think he always will.

Brady, I, and the kids took a relaxing ride on the pontoon that evening.  It was such a beautiful evening on the water.  More than usual, knowing that mom was feeling better.

By Saturday evening mom's symptoms were coming back.  Sunday and today have been bad days.  For whatever the reason, she had a few good days and we are grateful.