Tag Archives: ALS

Bryan’s Big 50…Something to Really Celebrate

 

 

 

Bryan was 33 years old when he was diagnosed with ALS. He had spent 5 years teaching in  Prague and was beginning his career at Wichita State University. He had fallen a few times and noticed weakness in his hands when trying to button a shirt. The neurologist told him then what they are still telling the victims of ALS now. There is no cure and no treatment. In short go home and prepare to die within 3 years. At a follow-up clinic  here in Wichita, the  neurologist  in charge told him to sign   a DNR put in a feeding tube and get his affairs’ in order because he had about 18 months. Bryan told him “no thank you.”

Needless to say, we were devastated. There was nothing we could do! Eventually an nurse from the ALS Association  visited us and gave Bryan a list of vitamins  to take daily. She told him to eat as much as possible because at some point he might start loosing weight and she wanted him to have extra. She also warned him not to eat anything with MSG because his body could not process it.

She had given us HOPE in a very dark world. We banded together as a family and started to make the most of each day. No  one knows how long they have and every moment is precious.

We had a large family gathering in Las Vegas with many of Bryans friends in attendance to celebrate his birthday that year. We didn’t know how many more we could celebrate with him. Our family and  friends made 3 trips over the years, to an all inclusive resort near Cancun while he could still travel safely.

 

This was our first family trip to Mexico

As we celebrate the big 50, 17 years after his diagnosis, I am in awe of this man. He can still walk with the use of a walker. He still eats most everything he wants. (no feeding Tube). The use of his arms and hands is very limited so we are his hands and arms. He has learned ways to type and play games on his computer. He is as self reliant as possible. He chooses to be happy.  Bry talks ( his speech is a little slurred when he is tired)  and laughs with all the nurses and aides that visit ( that is a story for another post) .

I want to make a point that this is not the norm for most ALS victims and their families. Their lives are ripped apart and they are helpless as the disease takes more and more abilities away. We both realize that  those same things are in store for us. His abilities are also slipping away, but thankfully more slowly.

He has been my rock since Jim passed in August. He helped me with all the legal  and  personal changes that have to be made when a spouse dies. Jim was our chef so Bryan and our wonderful family  aide Franci have taken over meal planning, grocery shopping and cooking. I am spoiled.

Every Patient with ALS (PALS) is totally different.  Bryan does have a very slow progressing type. (most other ALS  patients, PALS are not as fortunate. His breathing capacity is not great and he has some very rough days with muscle spasms and cramping I know because he is very quiet on  those days but he doesn’t complain. He works hard to keep from regressing.

This was a Big cerebration for all of us. Despite his early prognosis, Bryan Flores is still living with this monster disease, ALS.

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Can you choose to be Happy?

Happiness is that feeling that comes over you when you know life is good and you can’t help but smile. … Happiness is a sense of well-being, joy, or contentment. When people are successful, or safe, or lucky, they feel happiness.

A few months ago, I was caught off-guard when a prospective client asked me a question soon after I answered the phone. “Are you always happy or is just because of the  sales business you’re in?” The more I thought about it the more insulted I became. ( I know that was not his intention but it really got to  me.) First of all, I am in a service profession. I do sell things but I have never thought of myself as in a  sales business. I did respond by email. My first line was” I am happy; I choose to be happy.”

If you know much about my life circumstances, you might also question my reasoning.(Cliff Notes)

Reasons not to be happy.

  • Our 49 year old son has been living with ALS for over 15 years. He has no use of his hands and arms so we are those for him. He walks with a walker. He eats with our help. His voice is starting slur and we know his health is declining. ALS is always fatal There is no cure or even treatment.
  • My 94 year old Mother shares a home with us. Her health is declining.
  • My husband, Jim recently started dialysis 3 times a week and is doing chemo 1 day a week.
  • I work to help pay for the home aides that help us.

All the responsibilities of home fall on me.

Reasons to be Happy

  • Our 49 year old son has been living with ALS for over 15 years! ( most ALS victims only live 2-5 years after diagnosis, if that long) I am honored to be his arms and hands and that he still has so many capabilities that others with this disease lack. He can walk with a walker! He is not yet confined to a wheelchair. It is my pleasure to help him eat a full meal every evening at family dinner. No feeding tube. His voice is starting to slur but he has a wonderful laugh and a  writers sense of humor.( He was a creative writing professor.)
  • How fortunate am I to have my best friend, My 94 year old mother right in the next room when I need to share a funny story about my day or watch a girly net flick series or to hang out on the deck and read a book. She shares our  dinner hour every evening  with Jim , Bryan and I. During the Covid shut down I knew she  was safe and happy. That is a true blessing!
  • With Jim it is harder to be happy. I am so stressed about his health. We have been married nearly 54 years. He has been my only love. All his life he has been a happy, people-loving family man. He is trying so hard to stay alive with treatments that are taking every ounce of his energy and personality. I need to be his happiness and to find some joy in the day to share with him.

It takes a village is so true. God has filled my village with angels. Almost two years ago, when I knew that Jim could no longer help me with Bryan’s care, Kim at #ALS Association -mid America, told me about Hospice care for ALS patients (PALS). Care givers are CALS. Because it is a fatal disease with no proven treatment, the PAL can go on the program at any time after diagnosis. We chose to sign up and Bryan and I are so happy that we did. An RN Sara comes one a week ( she will come more as needed) to do a check up, access his needs and order meds or equipment at no cost to us. Katie comes twice a week to help him shower. I am not alone in making decisions about his health and this takes such an emotional weight off my shoulders.

Shortly after things started to open up after covid, I knew that I needed to get out of my home office a bit and work downtown more. A friend recommend Shelly and she in turn Franci.  These two angels are in our home from about noon to four 6 days a week. They are licensed caregivers and give love and care to my family when I am not here. There has been a noticeable positive change in Bryan, Dot and Jim since our home is filled with this positive energy. I get to do work I enjoy with people I love to be with and when I come home in the late afternoon, I get to be the mother, daughter and wife that I need to be with a good and happy attitude to take care of their needs  and enjoy them for the evening.

I am not a Pollyanna, I have days that I don’t want to get out of bed….and sometimes when the ladies are here, I do stay in bed. I shed my share of tears usually in my therapists office or with a friend over a glass of wine. Life does go on. As I write this, our garage lift stopped working. The refrigerator  seems to be on the blink and our grass may have army worms.  This may be the time to call all those people who say “let me know if I can do anything! ”

 

 

 

A Box on the Shelf

We all have our own way of coping with the things life throws at us. The first few months after Bryans diagnosis of ALS,  I could think of nothing else. It consumed my days and nights. Thinking about his future ; our future. At some point I realized that I only had the now. I could keep stressing about the “what will be”  but I needed to embrace the now and make the best of it for our family. I’m the one who sets the tone and I need to be positive.

That’s when I found the box. Its an imaginary box that looks very much like this picture. I mentally put all my fears about the future and this monstrous disease, put them in the box and closed the lid. It is on a shelf in my brain and mostly stays there.

A corner pops up when I tell someone about the horrors patients  (pals) and caregivers (cals) go through with this beast of a disease and when I prepare for the Walk to Defeat ALS fund raiser each year. But I never plan to open it. I know what it holds.

I’m having a more difficult time finding a spot for Jim’s chemo and dialysis phase of our lives. There are only a few more weeks of Chemo. I’m planning on him gaining weight back and getting in a rhythm of dropping him off at treatment and going into my design office and coming home and sharing family dinner. What do you know?  I don’t need a box ! I am looking forward to the future.

 

The Power of Friendship

Our family is not large. There are  Just the 4 of us, my brother Dan, Rhonda and Alexis and Megan and Matt in Kansas City. Fortunately  we have a wonderful extended family of friends here and around the country. I’m reminded of the saying “make new friends but keep the old, One is silver and the other gold.” We have a group of family friends that we met when our oldest children ( now going on 50) were starting preschool. We have all been through so much together. They are our chosen  family. The women are among a group of 12 including Dot and I who played Bunko together for over 40 years until we took a break during Covid.

Life has kicked me in the rear recently. As most of you know or will find out if you read this blog. We are a mutigenerational family. Our Son Bryan has been living with ALS  for over 15 years, my mother Dot shares a home with us and my husband of 54 years Jim. Jim has had a very difficult couple of years with his health.  He is now going through chemotherapy one day a week and Dialysis  three times a week.

When Jim started dialysis a few months ago, our long-time friends are the ones who would pick him up from treatment at 10:30 PM three nights a week. When they notice that I am having a down time, a dinner often appears at our door. This is love. It means so much for us to receive and for them to give.

When you are faced with tough times and a friend says” What can I do?” Don’t try to be self-sufficient, let them know what they can do to make life easier for you and the one in your care. Jim loves to have other people to talk with besides me!!

If you are the friend of someone who is ill, and or their caregiver, put it on your calendar to phone them once a week. Don’t say how is (the friend)? Say something like “I was thinking of you  and wondered if I can get you any thing or  drop a little something by and stay for SHORT visit.  Play the conversation by ear. The may want to talk about the illness or they may be grateful to be distracted by something new in your life.

We have dear friends ( Tom and Jim served  together in Vietnam) that we see every few years. They now talk on the phone every couple of weeks. I can tell that Jim always feels better after he has talked to one of his old High School Buddies ( who have now reconnected after attending a friends funeral.)

Friendship is a powerful tool. Give it and receive it openly. It is a gift too often taken for granted, something we know is there but we just don’t take time to appreciate.   This has become so obvious to me now. I am going to make a list of people that I need to call or write a note to.. Well, it will probably be a digital card. If you don’t hear from me right away….it is a very long list,

Wake-up Call

 

In July of 2014, I took some downtime with Megan and Matt in Kansas City and  designed an  elevator location for our Longwood house. On the trip home, I was struck with severe abdominal pain. Major surgery fixed the problem.

 While recuperating at home, with my walker bumping along the walls, and showering being a major struggle, I had a great epiphany; we had to move from my beloved home. Adding an elevator would only be a little band aid and a costly one. Much more needed to be done to make our house not only barrier friendly to Bryan, but Jim and I were not getting any younger or more agile.

 We (Jim, Bryan and I) decided that if we were going to move, we should have a place for Grandma Dot, my fabulous, then 87-year-old mother, to join us. So our list of requirements grew; exterior space to add an addition to house an elevator, a suite large enough for Bryan to have privacy and a bath large enough to add a roll in shower, a two room suite for Grandma and two offices spaces for Jim and I to be able to work from home.

House hunting began that day. Thank God for our daughter, Megan, and Zillow! Megan was staying with us to help with my recovery, but I added “head house hunter” to her nursing duties. We looked at hundreds of homes online and if anything looked promising, Megan, Jim, Dot, and Bryan would join our realtor Janelle to check it out. I, of course, was still on drugs and pretty immobile since surgery was less two weeks prior.

As I reflect on those weeks, I must nominate my entire family for Sainthood. It all seemed perfectly natural to me. I needed to get my family in a safe, comfortable and accessible home as soon as possible.

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After just a few weeks, we stumbled upon this 4 bedroom 3 bath ranch. It required a lot of updating but it had the spaces to fit the needs of our multigenerational family.

The Blending Begins

A year after we lost my Dad,  Dot moved into a condo that we totally renovated. She purchased new furniture and window treatments and was quite comfortable and content.

Let me preface this by saying that we are a very close family and she is at the center because of her unconditional love, amazing personality and sense of humor. She is more of a contemporary  than an elder and is a special part of my social circle. We have played in the same Bunko group for over 40 years. Megan calls her” Switzerland” because she tries to stay neutral when there is any conflict.

Before we began house hunting in earnest, we told Dot that we  were planning a space for her in the new home. We told her that she didn’t have to come with us right away, but that we were going to be sure that there was a place when she was ready. She told us that she would think it over. Two days later she  said that if we were sure, then she was IN! Jim assured her that this is what we all wanted.

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I’m not sure that this arrangement would work for every family. But we set out to make this home belong to all of us. Dot and Bryan were not moving in with Jim and Vicki; we would be sharing a home together. They are both paying rent and contributing to food costs. Each paid for certain aspects of the renovations.

Our Plum Tree home required an elevator and three remodeled bathrooms , so we knew that it would be 3-4 months before move in. Dot put her condo on the market and sold it in just a few days to someone who wanted two-week possession. She had to be out by October 31.

The timeline is a little crazy here, I had had major surgery on August 1 so I am less than 100%. At the same time, Jim was being treated for Crohn’s Disease.( I left that out of the beginning because I didn’t want to sound like a soap opera, but it is important now because of what is coming next) On October 14 (Our 48th Wedding Anniversary) Jim had a tumor removed. Seems it wasn’t  Crohn’s after all….just a touch of cancer! The Docs felt that they had removed it all but still recommended Chemo.

He came to Dot’s condo from the hospital so that we could care for him while we packed. Again, our incredible Megan had come to help care for her Dad while I worked only to be a part of the great move.