Unexpected Surprise…

So sorry for being away from blogging lately.  Just wanted to touch base with an update.

My MS had been acting up lately.  Just last week, my legs and feet became peg-legs and were hard as rocks. They just wouldn’t bend. My feet literally felt like they were stuck in mud. Blurred and double vision was activated. All I could think about was this is it!  I’ve progressed to the point of no return.  I just wasn’t ready for that reality and everything it meant.

Hubby took me the ER and I was admitted. They ran the usual, complete lab workups, MRIs, and a three day course of IV Solumedrol.  My labs looked good. MRIs were virtually unchanged for previous studies.  The Solumedrol did its job (praise the Lord). I was regaining sensation to my legs, my ankles and toes were moving, and my vision issues were stabilizing.

The “Now What?”  With symptoms improving, I was transferred to an inpatient neuro rehab hospital. Certainly not a part of my game plan, however, I knew this was where I need to be.

A week of evaluations.  The schedule here is rather vigorous.  It became very apparent to me that rest and sleep was encouraged.  On my first night, at 10 pm, my nurse suggested, “You might consider calling it a night, you have a big day tomorrow.”  I looked at her and immediately thought, she works here, she understands the demands of patient schedules!  I quickly responded, “Yes, Ma’am!”

It didn’t take long to realize the importance of rest.  Each day begins at 6 am, breakfast, dress, and meds before beginning your three hours of therapy – PT and OT, with rest and meals in between. They give you “a break on the weekends with only a couple hours of therapy.” I’m a okay with the schedule.  I know with hard work, I’ll be able to accomplish my goals here:  to walk again, to strengthen my body, and to be independent to the best of my ability.  My biggest motivators?  Going home.  I can’t wait to be with my hubby and puppers, and to celebrate and dance with my son at his wedding in May.

Tuesday is a big day for us.  With my evals complete, data gathered, my medical team meets to design a plan for treatment, including expected length of stay…we can’t wait.

Wishing you all a great week and look forward to writing again!

“Count Your Blessings”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Survey Says ~ Wednesday

survey says

Caregivers…Our Special Blessings

When I think about caregivers, my hubby, family and dear friends immediately come to mind.  Their unconditional love, care, ability to listen, to lend a shoulder to cry on, and even crack a joke to lighten my day is priceless.  My true lifelines!

Today, I’d like to share with you an interview of one amazing caregiver who does just that, Cathy Sikorski.  She recently composed a heartfelt story reflecting her role as caregiver to her special Nana, Showering With Nana:  Confessions of a Serial (Killer) Caregiver.  Please enjoy!

Q:  Tell us a little about you, Cathy?

CATHY:  I have been a lawyer for 30 years. My practice morphed into limiting it to Elder Law issues when over the last 25 years, I have been or continue to be a caregiver for seven different family members and friends. I am lucky to have two beautiful grown daughters and a very patient husband who has been with me for all those 30 years!

Q:  What inspired you to write, Showering With Nana:  Confessions of a Serial (Killer) Caregiver.

CathyBookCATHY:  During that crazy time of being ‘sandwiched’ between my 92-year-old Nana and my two-year-old toddler, I kept a diary, mostly to keep me sane. As I continued my caregiving journey, I realized that everyone who was living this struggle was probably laughing a bit along the way, and if not, I’d like to share a laugh or two with them to ease the burden, if only for a moment.

Q:  Caregiving can be both rewarding, yet exhausting.  It’s a hard role!  What motivated you to take care of Nana?

CATHY:  My Dad died at 29-years-old in a helicopter crash in the Army. My Mom had five children and was pregnant. At that juncture, we move home to live with my Nana and never left. I had a big debt to repay, and gladly.

Q:  It’s obvious humor plays a big role in who you are.  Do you find this helpful while managing the ups and downs of a caregiver?

CATHY:  Humor isn’t just helpful, it’s a necessity. I continue my caregiving life as the primary caregiver for my brother-in-law who has severe progressive MS and is wheelchair bound, and also for a friend with a traumatic brain injury, who is living on her own, but has disability issues. Without humor, I can’t imagine a good day.The best thing is those I care for ALSO have a rockin’ good sense of humor and we laugh together often and hard!

Q:  Could you share any recommendations or words of encouragement you might have for caregivers?

CATHY:  Caregivers hear the broken record of “you have to take care of yourself” and “ask for help.” But I’m just gonna’ put that record back on. YOU HAVE TO BE THE HEALTHIEST PERSON IN THE ROOM, when you’re a caregiver. The only way to do that is to take some time to care for yourself. From getting manicure, to even just putting in headphones and listening to music or comedy tapes that make you laugh and lift your spirits. I know it’s so hard to carve time for yourself, especially for caregivers living with their charges. But this is where asking for help matters. There are agencies, and their are friends and family. Do it. Just do it. You may be the best, but you’re not the ‘only’.

Q:  Where can readers purchase a copy of your book?

CATHY:  I would love for your readers to purchase my book at Amazon at this link!  http://www.amazon.com/Showering-Nana-Confessions-Serial-Caregiver/dp/0692440410/ref=sr_1_1?ie=UTF8&qid=1441889198&sr=8-1&keywords=cathy+sikorski  Or they can just go to Amazon.com and type in Cathy Sikorski and it will magically appear!

Q:  What’s up next for you?

CATHY:  I’m currently working on a companion book of the most important things caregivers need to do and know…with, of course, a humorous bent! I’m also speaking about comedy in caregiving and important legal issues for caregivers. And there’s always book signings. If any of your readers would like me to come to their book club and discuss my book they can contact me at 

I love hearing from my readers!

Thanks, Cath, for the opportunity!

I’m so happy our paths crossed, Cathy!  You play such a significant role as caregiver to your family and dear friends.  No doubt, it means the world to them!

Keep up the great work as you impact the lives of many, that includes me! 🙂

“Count Your Blessings”

 

 

Survey Says ~ Wednesday

survey says

Survey Says ~ Wednesday

survey says

The Next Chapters…

We all face bad days, trials, struggles, don’t we?  Just the mention of this fact probably brings instant thoughts of specific moments.  At times, you may feel rather overwhelmed, frustrated, angry and quite frankly helpless. Others may feel as if these moments are never-ending, one thing right after the other, with the inability to see a break any time soon.  That’s where I was.  I felt I was sinking and sinking fast.

Have you ever felt this way?  Have you ever asked yourself:  Why is this happening?  What does this all mean?  Why bother or even care?  The answer is simple…God isn’t done with you yet.  

While this is definitely hard to understand at times (trust me, I’m speaking from experience here), I find it very important to process my whoa is me moments and remember to trust Him. He knows what He’s doing even when I don’t necessarily agree or like what’s going on.  He will make His plan clear, taking me right where He wants me to begin the next chapter of my story. It’s easy to forget just that!

So what does this look like?  What chapters do you need to write? Remember:

  • You have so much to give and share with others

  • You have lives to touch and be inspired in return

  • You have friendships to embrace and others to let go

  • You have goals to reach and others to modify or cross off the list

  • You have a future, unwritten territory to explore, regardless of MS

No doubt, trials and struggles will come.  Life, it’s inevitable.  What are you going to do with what’s dealt your way?  What choices and examples will you make to live the best life you can and deserve.  What will the next chapters of your life reveal? 

For me, I want others to see that no matter how hard life can be at times, I’m making the best of what I’m facing, with a smile, and some laughter along the way.  

I remain encouraged by a favorite verse:

I can do all things through Christ who strengthens me.”  Phil 4:13

“Count Your Blessings” 

An Oldie but Goodie ~

Are you fortunate enough to have  a physician who takes the time to listen to you?  Help you manage the unpredictability of your respective disease?  When you do, it definitely makes each day a little brighter knowing you’re in good hands.

I was more than happy to travel to see the experts at John Hopkins MS Medical Center, Baltimore, Maryland, to treat my MS.  After all, they are among the Top 10 MS Centers in the states, renowned for providing cutting-edge treatments and clinical trials.  I was right where I needed to be, or so I thought.

There, clinical trials were plentiful.  I simply needed to qualify, agree to participate, and sign their informed consent.  That’s where the struggle began.  As discussed in a previous post, Clinical Trials…No Thank You!, I elected not to participate in their clinical trial for good reasons. The benefits did not outweigh the risks for me.  

It wasn’t long after my decision that my white blood cell count and liver enzymes were significantly abnormal.  The doctor changed my DMT to Copaxone with the hope that my labs would return to normal range.  Copaxone is man-made and doesn’t alter white blood cell count or liver enzymes.  Fortunately, after several months, my numbers were normal again.  Praises for sure!

During this waiting time,  I became concerned as my doctor’s office did not return my phone calls or emails to MyChart.  I desperately was looking for clear direction:  What should I do regarding my abnormal labs? Was this something I should worry about?  For 15 years, I never had these issues.  Finally, she responded, “Follow up with your family doctor.” “Your on Copaxone.” “It doesn’t effect you WBCs or liver levels, therefore, we can’t handle this.”  My response, “Are you kidding me?” “You’re the expert not my family doctor.”  Talk about feeling helpless.  Was this in response to my “No thank you” for participating in their clinical trial?

Time to move on. For years, I was previously treated by a local MS Neurologist.  We loved him!  However, at our last appointment a few years back, he excitedly shared he took a position at the University of Virginia.  His role would be Assistant Professor and Research MS Neurologist. As the tears filled my eyes, selfishly, I was sad he was leaving.  But, I knew he would continue to impact and help patients in the MS Community. For that, we were happy.

So guess who we went to see?  That’s right, my previous neurologist, Dr. David Jones.  This time, we headed down the highway to Virginia and enjoyed the beautiful Blue Ridge Mountains along the way.  At our appointment, smiles abound as we enjoyed our conversations with Dr. Jones.  We picked u[ right where we left off!

We talked about my current status and obvious progression.  He shared that there were several drugs in development for progressing forms of MS.  That was exciting to hear.  I also asked him if he heard of a Clinical Trial in France, MD 1003 – high dose (300 mg)Biotin?  He did.  It’s believed that high dose Biotin would help regrow damaged myelin. Improvement in function was noted in France as early as three to six months.  

High dose (300 mg) Biotin is not approved by the FDA.  Currently, there are no clinical trials being planned here in the states. However, with a written script from your neurologist, this supplement could be filled by a compounding pharmacist.  We decided to make the investment to see if this would stop my progression and begin repair of my myelin.  I was hopeful that perhaps this compound would do the trick.  However, I  remain cautiously optimistic.  I don’t want to be disappointed should it not work.

Despite the long trip to see Dr. Jones, hubby and I left his office feeling a sense of peace and comfort knowing he had our best interest at heart.  That means the world to us!  How about you, are you happy with your physician? Are you able to have good dialogue to determine what is or is not best for you? Or are you like me, time to move on?  

“Count Your Blessings”

MS Breaking News…

Breaking-News-file-jpg

local10.com

Exciting news!  Check out below article discussing the potential treatment for progressing MS, Ocrelizumab.   Hope is alive!  Enjoy your day!

 

FDA Grants ‘Breakthrough Therapy’ Designation to Genentech’s Ocrelizumab for PPMS

 

Survey Says ~ Wednesday

survey says

Clinical Trials ~ No Thank You!

Previously, I began tackling the results from Survey Says ~ Wednesday question: Clinical Trials…Sign Me Up!  We took a look at the popular response, “Maybe.”  Today, let’s look at “No.”

We know there is no cure for MS (and many other diseases) or options for patients with progression.  We have symptom management treatments at best.  Having said that, we do know, with certainty, that the first type and most common diagnosis of MS is RRMS (Relapsing Remitting MS).  Today, patients have 13 treatment options available as a first line of defense for RRMS. Currently, there is nothing for progressing forms.  Having said that, it is my belief that the researchers have an opportunity to find something, anything to help the varying classes of progression. Financially, this area of treatment will indeed have great returns for an empty market.

So now what?

Wait, wait, and wait some more.  Clinical trials are the golden standard for medical research.  Each pharmaceutical drug on the market in the US receives FDA approval only after clinical evidence (data) shows it’s effective and safe for patients. That’s a good thing! Gives me time to work on patience…again! 🙂

Clinical Trials…No!

clinicaltrialI was traveling to John Hopkins Multiple Sclerosis Center in Baltimore, Maryland, with the hope to participate in a clinical trial.  John Hopkins is know as a premiere MS Center with cutting-edge treatment and research. I felt the need to see if I just might qualify for potential trials.Afterall, I’m progressing with no other options to stop and/or repair neurological functions. What did I have to lose?

I did qualify for one trial:  A Phase 1 Trial of Intrathecal Rituximab for Progressive Multiple Sclerosis Patients.  At my visit, my doctor was very confident this would be a good trial for me.  Potential to “stop brain atrophy and get rid of B-cells.”  The idea of the trial was to inject the medication (Rituximab) via the spine (intrathecal). It was the hope this method of administration would “allow the medication to cross the blood brain barrier and arrive directly in the brain.”

Of course, her list of side effect cautioned me…post spinal injection, you may feel nauseated, temporary paralysis, headache, possible spinal infection, to name a few.  This procedure would be done every two weeks for three months. MRIs would monitor activity each month.  I’m certainly not one to say yes immediately.  My doctor provided me with an 14-page informed consent to read over, sign, and ask questions if needed.  Let the research begin.

Needless to say, I couldn’t wait to discuss with hubby.  We went through the consent, researched, and made a list of questions to ask the doctor when they called:

  • What happens to the “B-Cells” when trial period is complete?  “They may come back.” “We will monitor with MRI a year later to learn more.”  “The trial will reveal if eliminating B-Cells slows down brain atrophy.” (keep in mind this happens naturally as we get older, however, faster with MS patients.)

  • Does this attack T-cells too since we know these guys cause a lot of trouble? “No.”

  • Side effects/injury, will you treat if they happen?  “Your medical team at home would manage your care.”

  • Will I be responsible for any expenses?  “Yes, what your insurance does not cover is your responsibility.”

  • PML (progressive multifocal leukoencephalopathy) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).** Today, a simple blood test reveals if you carry this virus.  My questions was this: Do you test for PML?  “No.”  What!?!  A simple blood test will show if you carry PML virus.  This made absolutely no sense to me!

After a lengthy discussion and our questions addressed,  several factors made this an easy decision to make.  My answer was a firm, “No thank you.” The benefits did not outweigh the potential risks.

Clinical trials can be a wonderful option if current treatments have/are failing. Remember, it is very important to take your time, do your research, read the informed consent carefully, and ask plenty of questions.  You, as a patient, will make good educated decisions for your care as you weigh the benefits and potential risks involved!

“Count Your Blessings”

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Disclaimer:  This is my personal experience and decisions made. If you have any questions or concerns, please reach out to your physician to see what the best option is for you.

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