Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Despite my best efforts to keep Robert from getting my cold (which I got from Richard, by the way), Robert got sick.  He was congested for a few days then it hit in full force and last night Robert was wheezing and shivering which usually means a temperature is about to break out and pneumonia and sepsis are not far behind.

Credit: World Sepsis  Day Organization

There is always a concern of pneumonia and sepsis with Robert since he has weak lung muscles (part of his overall weak muscles and, yes, this is all due to a lifetime of uncontrolled seizures).  Robert is unable to get a good cough to get the congestion out of his lungs.  It just sits there brewing bacteria.  Then it turns into pneumonia, (usually with sepsis) and Robert is in the hospital in no time. The hospital stay leads to a decline and it takes forever to get Robert back to baseline. 

We have to stop this downhill ride as soon as we can.

When Robert is sick, I take his vitals at least twice a day.  Signs of sepsis include fever, high pulse rate and low blood pressure so I am on the lookout for these symptoms.  We keep a log of vitals so I know what his usual stats look like.

Robert’s pulmonary doctor agrees (his GP is a little less aggressive in his treatment so happily punts to the pulmonary doctor). The plan we developed with the pulmonary doctor is to put Robert on antibiotics early so that his colds do not develop into pneumonia.

Of course, colds never happen during regular doctor’s office hours.

While getting Robert ready for an early bedtime and dinner in bed, I called the doctor’s office and left a message for the GP on call (sometimes I call the pulmonary doctor’s service first but occasionally I start with the GP).  Robert’s doctors are very good about returning calls quickly and this wasn’t any different.

Since the doctor calling me back most likely doesn’t know me or Robert, I try to establish very early in the call that I know what I am talking about.  I am so adamant about not taking Robert to the hospital unless absolutely necessary, I don’t want to be dismissed.

I give a brief history of Robert’s pneumonia and sepsis, my reluctance to go to the hospital due to that causing a decline (I have yet run across a doctor who disagrees with this), rattle off his vitals and any other symptoms (labored breathing and shivering for instance).  Then I ask for antibiotics. 

There is usually hesitation which I completely understand.  However, Robert is not a healthy, young man who might become resistant to antibiotics when he is ninety. He is already resistant to a few antibiotics. It is more of a risk not to put him on antibiotics. 

Still the GP hesitates. They have to look at the chart, they have a policy against prescribing antibiotics until there’s a fever, they want me to wait until morning.

Deep breath.

I explain Robert has a pulmonary doctor and would they mind if I called that exchange as they have prescribed antibiotics in the past.  I’m not really asking permission but I do want to give them a courtesy “heads up” that I am going up the chain. 

They are usually more than happy to have me do this.

So I start over with the pulmonary doctor after hours number.  Run through my pitch for antibiotics and get them. 

Last night we were up against a deadline: the pharmacy was going to close soon. Yikes!  I need these antibiotics!

I was thrilled when the on call pulmonary doctor was Robert’s own doctor!  Woohoo!  I didn’t have to make my plea – I just had to give him the phone number of the pharmacy and tell him the last antibiotics that worked for Robert.

Hospitalization averted!  (At least everything has been done to avoid a hospitalization.)

We just wait for the antibiotics to work and for Robert to feel better.  I talked to Robert tonight to see how he was feeling and he said he is feeling a lot better now.  He then tells us about other people helping him and has a special message for Bowen – apparently someone who helped him out today at Day Program. 

Epilepsy Awareness Month Day 18: Caregiving as a Team

Richard and I have been together for 18 years and raised three kids together (two his, one mine, although we just call this “family”). Even though we have different parenting styles (mine is better, of course, if only because I am the one writing this), we managed to get the kids to adulthood with very little need for therapy. 

Enjoying respite time

That’s a win.

Now, Richard and I care for Robert.  We still have different styles in caring for him but we do a pretty good job of dividing duties and making sure Robert is healthy, happy and safe.  We are actually at our best during a crisis which, actually, I’m not sure what that means about us but I don’t have time to analyze it. 

The impact of epilepsy on Robert extends to us, too.

We are certainly not perfect and we do have our days where we need some quiet time before we lose our minds (okay, probably me more than Richard) but what we do works for us.

Tonight, we’re dealing with Robert being sick so this is going to be a quick post (we shot the interview last weekend).  As soon as we realized Robert was wheezing, shivering and having trouble breathing, we fell into our “crisis mode.” We got Robert into pajamas, into bed, a call into the doctor, on his oxygen, medicated, vitals taken and symptoms logged – pretty much without needing to say anything.

It isn’t always easy but we manage to get everything done and even have a few laughs every now and then. 

That’s a win too.

Fall Prevention: Handi-Ramp

A representative from Handi-Ramp contacted me to see if we would try out their handi-treads for stairs and give them a review.  I don’t usually do this but since they are a product designed to prevent falls, I thought it important to share as much information about them as possible.

Falls are a huge part of our life and can be the turning point in a person’s health, particularly for the elderly or disabled.  According to the Centers for Disease Control and Prevention, “Each year, one in every three adults ages 65 or older falls and 2 million are treated in emergency departments for fall-related injuries. And the risk of falling increases with each decade of life.”

Robert’s seizures and mobility problems make him a high fall risk and he has been injured many times from falling during a seizure. Robert’s mobility and balance problems also prevent him from using stairs so, unfortunately, we could not use the Handi-Ramp product for Robert.

However, my mother-in-law, Carol, was a perfect candidate for the stair treads from Handi-Ramp. Carol lives in a mobile home and has to maneuver stairs to get inside. Carol actually broke her femur this year from a fall she had from slipping on a grape in her kitchen. While the fall was not on the stairs, we do worry about her managing the stairs every day.  Carol has had strokes, breathing problems and wears a pacemaker. Both knees have been replaced and only seven months ago she broke her femur.  She is also stubbornly independent and lives alone. 

So we worry about falls.

Carol's stairs BEFORE Handi-Treads

My husband, Richard, and I jumped at the chance to try out the Handi-Ramp stair treads.  We worked with the reps at Handi-Ramp to get the right size for Carol’s stairs. Everyone we have been in contact with (including the CEO, Thomas Disch) has been terrific.  Thom was especially helpful when we were trying to figure out which size to use on Carol’s stairs. Richard measured the stairs and sent Thom a picture of them to give him an idea of where we would install the treads.

Thom shipped six of the 30 inch by 3.75 inch treads for Richard to install and we received the package very quickly. Richard opened the package to see what he would be installing and was impressed with the sturdiness of the treads and raved that “they look like they will never wear out.”

Richard got most excited about all the holes available to use for the screws! There were many holes spaced throughout the stair tread in order to make it easy for the installer (in our case, Richard) and to ensure the safe and easy installation of the treads. Richard said the treads were, “more secure because of the number of screws available to use.”

Richard was able to install the stair treads quickly and easily. (Sounds like it was so easy, even I could have done it!)  No professional installer is needed for these stair treads.

Installation was a breeze!

Once they were installed, Carol tried them out and has been using them for a couple of weeks now. She said that she loves them and, “They make me feel a lot safer.”  She even said, “They look good too!”  Richard pointed out the stairs he installed are chrome in color which are easy to see (although Handi-Ramp also has options in brown, black and yellow).

Carol was a little concerned the raised buttons on the treads would hurt her hand if she fell on them but we explained the treads are designed to grip her shoes so she won’t fall. We assured her she won’t ever have to find out if her hand would get hurt on those buttons!

AFTER: A great comparison between
the old and the new

Most importantly, Carol summed up what all of us think about them, “I like that they are so sturdy.”

Feeling safe and staying healthy is so important. Since Carol lives alone and is recovering enough from her broken leg to get out of the house, having peace of mind that she will be safe going up and down her stairs lets us all breathe a little easier. 

Pricing for the size we used starts at $13.95 per Handi-tread. Carol is very cost-conscious and thrifty but said they are “worth it for the peace of mind.” For the material and ease of installation as well as peace of mind, I agree they are more than fairly priced. Even better, there's a coupon! Please use code BLOG2014 for a 10% discount. 

The quality of the product is exceptional and I am happy to recommend the stair treads from Handi-Ramp.

Epilepsy Awareness Month Day 17: Photo Surprises

It is a good thing Robert is a ham! I certainly couldn’t get him to participate in so many videos unless he loved the camera. 

Robert is in the middle of this group of pictures -
standing tall

Robert also loves to take pictures. For years, Robert showed up to every family event with a camera around his neck.  I wonder how much of that was passed down from our mom who also loved her camera.  She created a dark room in our house so she could even develop her own photos (a few of which I have hanging in my office). She was a fanatic when it came to her photos and there were so many “take two” action shots at Christmas and birthdays, it became a family joke.

All three of us kids: Can’t we just open our Christmas presents? 

Mom: Not until we get one more shot of racing down the stairs, now get back up there! Look excited!

Dad: In the background, laughing at all of us!

Since we lived in Nebraska when my brothers and I were young, Mom also used to usher us into the basement during a tornado warning and then race up the stairs and outside to capture pictures of storm clouds and – I’m sure she hoped – a tornado or two. 

Yeah, Mom was a little on the wild side. 

Robert seemed to get that photography gene from Mom. (It actually might run in the family as one of our cousins is a terrific photographer!). 

Robert still likes to take photos but it is practically impossible for him to manage a camera since his dexterity has declined and his tremors make it difficult to hold the camera steady.

It saddens me that a hobby Robert really enjoyed (and maybe in some way, connected to our mom with) is something he can no longer do.  He just can’t operate his fancy camera anymore. I have given him disposable cameras to use but they just don’t hold the same appeal to him. 

The impact epilepsy has had on this part of Robert’s life is that it took away the ability to continue to do a favorite hobby.  He still enjoys being in photography class at his Day Program and usually lists it as one of his favorite things to do so the hobby hasn’t completely ended. Plus, Robert has other hobbies/obsessions: word search puzzles and watching game shows.

When I took over Robert’s care, I found a whole camera bag full of undeveloped film. It sat for years on my to-do list until I finally took them to Costco for developing this past weekend.  I was afraid these nine rolls of film would be so old or maybe damaged that nothing would be on them.

Only one roll was a bust – the rest held delightful surprises for all of us.

Which, of course, I filmed.

I actually filmed Robert looking at the pictures over a couple of days.  It is not edge-of-your-seat action but it is raw footage of Robert looking at pictures he took and remembering people from years ago.

Makes me want to pick up a camera! Oh, wait . . .

Clip 1:

Clip 2: