Connecting all the Pieces

I was recently asked by a friend how Robert’s pulmonary issues are connected to his seizures.

I thought this was a terrific question and one I have been trying to understand ever since his pneumonias started showing up a couple of years ago.

But first, I had to sing “The knee bone is connected to the thigh bone, the thigh bone is connected to the hip bone, the hip bone is connected to . . .” You get the idea.

I couldn’t help myself.

That is the million dollar question. How are the seizures related to his proclivity to develop pneumonia at the drop of a hat?

Robert’s pneumonias have always been classified as aspiration pneumonia. Sometimes, the pneumonia doesn’t even show up on the x-ray which confuses the heck out of the ER personnel. However, a doctor once told me that it is not always possible to diagnose pneumonia by x-ray – it is diagnosed through symptoms.

Robert has the symptoms every time and we are well aware of those symptoms (cough, fever, high pulse, low blood pressure, reduced mobility and “brain fog”).  In Robert’s case, sepsis is usually an unwelcome companion with his pneumonia (and no matter how quickly we recognize the pneumonia, the sepsis sneaks in there).

The pieces are starting to come together with each new specialist Robert sees.  A year ago during one of the hospitalizations, Robert saw an ENT and was diagnosed with dysphagia (a swallowing disorder) which was thought to be causing his aspiration pneumonias.

Great! He was put on a modified diet (called either “chopped” or “mechanical soft”) and thickener was added to all of his drinks.

Two months later he was hospitalized again with pneumonia so this wasn’t the only piece of the puzzle.

Earlier this year, Robert’s pulmonary doctor did a couple of scans of Robert’s lungs and concluded that his lung muscles were weak and there really wasn’t much more to do other than try to manage the symptoms before Robert needed hospitalization. He explained that the lung muscles were weakening much like Robert’s leg muscles and other muscles were weakening and it would just be a matter of time before he couldn’t recover from one of his pneumonias.

I appreciated his frankness and the explanation of what was happening. Since then, Robert developed his typical pneumonia symptoms five times (that’s just this year) and the pulmonary doctor put him on antibiotics each time and we were able to keep him home while he recovered.

In June, however, Robert’s mobility was really taking a hit.  His leg muscles were getting exceptionally weak. He could no longer use a walker and we had to use the wheelchair 100% of the time.

I still didn’t know what was causing this muscle weakness and the decline. The decline seemed to be so rapid that it was head-spinning. It was all my husband and I could do to try to keep up with Robert’s increasing needs.  

Finally, the neurologist told us to go to the hospital.  They weren’t sure what was going on either but suspected a neck compression on the nerve in his spinal column (which would really suck). He needed to be in the hospital to investigate further.

We were fortunate that the neurologist on staff during Robert’s hospital stay was a specialist in movement disorders.  She was easy to talk to but exceptionally brilliant. Robert couldn’t have been in better hands.

She determined that Robert did have a neck compression but it wasn’t severe enough to cause him to lose his mobility. Instead, she diagnosed him with Cumulative Traumatic Encephameylopathy and Parkinsonism and started him on a new medication (Sinemet) which helps manage the symptoms. Combined with physical therapy, Robert’s mobility returned to a level I hadn’t seen in months.  It was such a relief.

I had a question about Parkinsonism which the neurologist answered at Robert’s most recent neurology appointment: it is different than Parkinson’s disease. Parkinsonism is just the symptoms of Parkinson’s disease and not the disease itself.  Parkinsonism can cause muscle weakness (including the lungs), movement disorder (Robert’s muscles were weak but they were rigid), tremors and swallow difficulties.

Things were starting to make sense.

From what I understand from the neurologist, the CTEM and Parkinsonism are caused from brain trauma Robert sustained due to a lifetime of uncontrolled seizures, two brain surgeries and dozens of concussions (caused from falling during a seizure).

This does make more and more sense to me. I think of Muhammad Ali who developed Parkinson’s syndrome due to being bashed in the head multiple times during his boxing career.

The brain can only take so much trauma.

Robert sees many specialists (three neurologists, a pulmonary specialist and not just an ENT but an Otolaryngologist for his swallow disorder) - and don’t ask me to pronounce that type of doctor!

It seems recommendations for treatment and piecing together the puzzle of his illnesses is pretty fluid. Prescriptions change, medication dosage changes, even his diet recommendations change (Robert no longer needs thickener as the doctor thinks that makes swallowing more difficult for him). 

Richard and I just manage the best we can and help Robert understand what is going on with him as much as we can.

We know that Robert’s body doesn't handle illness as well as the rest of us because of the compromised brain function which ends up affecting his mobility and creating sort of a "brain fog." He forgets words, has trouble telling us what he wants to say and has a weaker grip on his pen so has trouble with his word search books. He gets drowsy and slow and the ability to walk becomes a luxury until he recovers. For the same reason, it also takes him a lot longer to recover from any sort of illness.

He is sick again now and on antibiotics. He has trouble walking, is having breathing difficulties and has his brain fog. I am monitoring his vitals closely in case there is an indication he needs to be hospitalized.  

That's my understanding of the inter-related workings of his issues. 

Epilepsy with uncontrolled seizures to brain trauma to Parkinsonism and CTEM to pulmonary problems, dysphagia and mobility issues. 

I may not have all the pieces or understand all of what is happening but the idea that everything that is going on is related and is really ultimately caused by his uncontrolled seizures renews my advocacy to spread awareness about epilepsy.

There is not a lot of research out there about the effects of epilepsy on adults with uncontrolled seizures.  However, I don’t need to learn what happens by reading about it.  We’re living it and I would love nothing more than to stop epilepsy in its tracks.

(Obviously, not everyone will have the same experience as Robert so it would be nice to have more research about the effects of uncontrolled seizures.)

Please help me spread awareness about epilepsy and, if you’re so inclined, check out a few epilepsy organizations that do terrific work researching epilepsy and educating people about it:

CURE Epilepsy

The Epilepsy Foundation

Robert’s Birthday Fun

Robert turned 49 years old on Saturday, September 6.  Woohoo! Happy Birthday, Robert!

Richard took a birthday cake to program when he dropped off Robert on Friday morning. I had forgotten to tell program that we were doing this but they know me by now and are not going to turn away cake! 

I wondered all day how the party went so after work on Friday, I asked Robert about it.  He’s a man of few words so the conversation went a little like this:

How was program today?

Robert (smiling): It was EXCELLENT.

Did you have your birthday party?

Robert (smiling): Yes, we did!

How was the party?

Robert (with a huge smile): It was GREAT!

Did everyone sing happy birthday to you?

Robert (grinning from ear to ear): Yes, they did!

Did you guys eat cake?

Robert (still smiling): Yes, we did!

Was it good?

Robert (still smiling): It was DELICIOUS!

I think he was happy!

We let Robert sleep in a little bit on Saturday since I knew he would be up late with his family birthday party happening later in the day.  Once he woke up, Richard and I told him happy birthday! Robert responded with a “thank you” and “today is my actual birthday.”

Yes it is!

Richard and I spent the day cleaning the house and running errands to get everything ready for the family party. Robert relaxed watching Family Feud and working on his word search books.  Every now and then, Robert would tell us, “Today is my birthday!”  

We responded, “Yes, it is! Happy birthday, Robert!”

Robert was so excited about his birthday that he must have repeated this 20 times throughout the day. 

By chance, I saw San Francisco 49er football plates and napkins at the store and since Robert loves the 49ers, I thought we’d have a 49er themed party.  Richard saw them and immediately made a connection of Robert turning 49 and having a 49er party! Sounds good to me and Robert loved it!

Eventually, it was time for the party and Robert (who usually gets cranky with a lot of noise) didn’t fuss about turning off the television or having a lot of commotion. He seemed to enjoy having a lot of people talking and laughing and even gave the dogs pets when they wandered by (yes, even Taz!).

We had four dogs and nine people, sometimes all in our tiny kitchen! The laughs were just what this house needed after months of worry and decline and mood swings. (Robert’s mood has improved greatly since his medications were adjusted and he is able to walk again. It’s amazing what a difference attitude makes in everything!)

Richard grilled corn on the cob and cheeseburgers - real ones for Robert and most of our guests and veggie burgers for us and Rachel. 

Robert read all the cards after dinner and opened his gifts. He even won $15 on a lottery ticket he got as a present! Chocolate cake and Rocky Road ice cream came next and Robert was in heaven (and will be for a while because we have a lot of cake and ice cream left over!). 

Fitting for the 49er themed party, Other Brother gave Robert a 49er cap to match his own. It was delightful to see the two of them together in matching caps!

The day was also the 17^th anniversary of me and Richard which just added to the enjoyment of the day. 

After these last few difficult months, I am grateful for the gathering of our family for lots of laughs and a wonderful celebration. Even though health problems persist with Robert and Carol and Richard, I was able to appreciate how healthy they are right at this moment and enjoy the magic of the day. 

Happy birthday, Robert!

Robert is Back Home!

After nearly two weeks in the hospital and 48 days in a Skilled Nursing facility, Robert is home!

Packing up to leave the SNF

For weeks I wondered if he would be able to come home or even if I could continue to care for him at home.  By the time he went into the hospital on July 1, he couldn’t walk. Heck, he couldn’t even transfer from a wheelchair to the bed.  We were dressing him, cleaning him, brushing his teeth and dealing with days of excessive sleepiness and grogginess.  Not to mention, his extreme crankiness (and mine!). 

I didn’t think I would see the old Robert again and I certainly didn’t think he would walk again. I even came to the realization that continuing to care for him at home was not in the best interest of anyone. (That was a really tough realization and I will write about that more in depth soon.)

Robert started a new medication called Sinemet while he was in the hospital. It is supposed to help with Parkinsonism which is one of his new diagnoses. The goal was to also get Physical and Occupational Therapy while in the SNF.  Upon discharge from the hospital, the goal was to bring him home.

A lofty goal considering he had to be discharged using a gurney because he couldn’t transfer from the bed to a wheelchair.

Robert's last day in the SNF - Excited to come home!

Once settled into the SNF, Robert loved being served meals in bed and watching television. However, he was irritated with the physical therapy staff – at first.  They were making him do things that hurt his muscles or (worse) stopped him in mid-routine of brushing his hair for the third time or shaving for the fifth time. (Some people have trouble getting their caree to bathe or do their own personal grooming. I have the opposite problem – Robert could spend hours on personal grooming if I let him!)

The physical therapy team persisted.  Robert got into their routine and, for the most part, was cooperative and even enthusiastic. We celebrated each milestone from getting out of bed to learning to use a transfer pole to leg exercises and eventually walking with a walker!

There were days he didn’t want to do the exercises but I participated with him one day and suggested they do PT before breakfast since he was already awake and dressed and just waiting around for breakfast to be served.  That seemed to work except on the days when his excessive drowsiness came back to haunt him (the doctor suspects that might be caused from high ammonia levels so we’re keeping an eye on that).

The physical and occupational therapists came to know Robert and worked around his drowsiness and his occasional reluctance.  They commented on how polite he was and how hard he was working.

The combination of Sinemet, the PT and OT and Robert’s own persistence has worked miracles. 

Robert walking again!

My hope was to get Robert back to where he was in June – using a wheelchair and being able to transfer without us having to lift him. Then I knew he could come home.

He has exceeded those hopes and blown them out of the water! He is walking with a walker but we’re using a wheelchair for long distance as he still gets tired easily. He is dressing himself – including those difficult socks! He is brushing his teeth by himself and is not nearly as sleepy. He actually moves quicker and is staying awake and alert throughout the day. Robert is cooperative and pleasant and is continually surprising us with his progress.

Robert is happier than I have seen him in a very long time. He is grateful to be home. He said he liked the SNF but he likes being home “a lot more.”

Robert was happy to see all three dogs (yes, even Taz!) and said they were all “good dogs.”

Robert's first meal back home: Cheeseburger & shake --
and a little bit of Rocky Road ice cream

Robert told me and Richard on his first night at home, “It is a very happy day to be back home.”

Robert is back – not just back home but back to himself and that makes for a very happy day indeed. 

The reality is that Robert will continue to need physical therapy and for us to help him with “cues” so he doesn’t slip back into old habits. He will need to continue to be monitored to see if the Sinemet needs any adjustment. We still know with all of Robert’s diagnoses, there is no “cure” and we will see a steady decline but we have reset the starting point. We have drastically shifted where we were just a few months ago. 

Even though there is no cure and the reality is that the future holds a decline and probable hospitalizations, the moment right now is what we are celebrating. And if there’s one thing Robert has taught me, it is to appreciate the moments.

The future cannot take this moment from us.

#mycare Contest Winners!

What a fun week! 

After my realization that I was self-care deprived, Denise Brown of CareGiving.com and I launched this self-care challenge:

Take care of yourself, take a picture of it, post it on social media using #mycare for a chance to win a prize! The prizes of an “I Care” t-shirt and a $25 Visa gift card were just an added bonus because the real fun was taking care of ourselves as we care for others. 

We picked five winners from the entries posted on Facebook, Twitter and Instagram but from the looks of the pictures, we all won. How much fun was it doing something for ourselves (if even for a minute or two)?  I found myself recognizing activities or moments that are part of my every day that really count as #mycare.

I may have personally started off by fulfilling my self-care with pedicures, manicures and massages but what I realized is I can have a moment or two of #mycare in my backyard with my dogs or lunch on the patio with my husband:

Our winners found #mycare with a home pedicure, gardening, time with friends, a delicious indulgence and a box of chocolates. 

Congratulations to Pegi, Richard, Pear Lady, Y Diaz and Chrisanta!  (Please PM me with your contact info and I will get your prizes out to you). 

Even though the contest has ended, I am going to continue to take care of myself while caring for Robert (and sometimes Richard). I am going to recognize and be more grateful for those snippets of time that can refill my bucket. 

I don’t want to get in that place of forgetting how to care for myself. Of doing things that make me happy and that rejuvenate my spirit. I am going to remember that caring for me is as important as caring for others. 

I can no longer think of self-care as an indulgence – it is a necessity. Let’s help each other remember that.