Category Archives: Friendship

Thank You ALS Association Mid West Chapter

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My family and friends have been involved with the Walk to Defeat ALS for nearly 20 years. Signs like these, “In Celebration Of” and “In Memory Of” represent the hundreds of people in our area who are living with or have passed from ALS, line the entire mile-long walk.  Many of the “walkers” are in wheelchairs, while others wait at the finish line to welcome their supporters.

The walk site is always very festive with music, and games for the children. There are free food stands, t-shirts, and all the other things you find at fundraising walks. What you do not find is a survivor’s tent or folks wearing survival banners. No one survives ALS. Yes, some victims, like my son Bryan have extremely slow disease progression. For some unknown reason, he has beat the odds and has lived much longer than the predicted 2 years.

There is no treatment for ALS. Yes, there are many drugs in the trial stage, but when the general life expectancy is limited, we are not able to wait years for trials and the FDA.

This year a spark of hope exists. Bryan is on a new drug called Relyviro. It is not a cure or a treatment but it does possibly delay progression. There are many side effects and some pals ( ALS patients) are unable to use it. Thankfully, Bryan can tolerate it.

Your contributions to  https://www.als.org/mid-america help all the pals and cals (caregivers of als patients) in  so many ways other than research. Wichita now has an ALS Clinic with Physicians that specialize in this disease. In years past, we had  the 6 hour round trip journey to KC to visit KUMed. That often required an overnight stay which is very difficult when pals depend on so much equipment for health support. Each family receives a $1,000. Grant to use on meds, equipment or caregiving. This year they are a offering a Smart Home Program to families in this service area

We are a Family of Three Generations Living Under 1 Roof

Let me help you transform your home into a comfortable, safe, accessible and beautiful
space that you can call home for many years. Why not invest in your current residence
instead of paying for a retirement village or assisted living?
Your future begins now!

As an expert in Universal Design and Living in Place design, I have the education and experience to help you achieve your goals. I am the only Interior Designer in the Wichita area who is a Certified Living Place Professional (CLIPP) and a practitioner of the American Society of Interior Designers (ASID). My specialties include multi-generational design, and I always anticipate the changes that life may bring to your family when working on your design plan. My ultimate goal is to create a space you and your family will love to call home today and tomorrow.

OUR STORY

After a 30-year career in a retail design company,  I started my own design firm called “Designs for Life.” The tagline “Interiors Designed for the Way You Live … Today and Tomorrow” reflects that a well-designed home should be able to adapt to life’s changes. 

My family should be the Poster Children for the Living in Place design movement. We are a family of three generations living under one roof. My late husband, Jim, and I were in our late 60s with a few health issues; we both enjoyed our work and had no plans to retire. Our son, Bryan, was diagnosed with ALS 20 years ago. He has increasing limitations with mobility and independence. My mother, Dot, who just celebrated her 97th birthday, remains active in helping us care for one another.

It became apparent that we would need to find a home to renovate to help us all live our best lives. Completing our new home was the most daunting and satisfying project of my career. I always prided myself on my ability to meet the needs of my clients. My personal experiences and newfound knowledge allow me to provide so much more.

We are replacing the outdated “Aging in Place” design with a proactive “Living in Place” approach. By discreetly incorporating long-term adaptive features into everyday decor, homes can be prepared for expected and unexpected life changes. The goal is to provide everyone with a comfortable, safe, and accessible home that can support them through any injury, illness, or age challenges. The Living in Place Institute helps eliminate the stigma of “Aging in Place” and allows people to embrace the inevitable life changes while still living independently in their own homes.

Vicki Flores, a Living In Place Pro, has mastered creating homes that exude beauty, safety, and comfort. With her exceptional skills and expertise, she transforms living spaces into havens that are not only aesthetically pleasing but also safe and practical. Give your home the touch of Vicki’s magic and experience the joy of living in a place that is both beautiful and function

Hospice and ALS

Most people actuate HOSPICE with end of life.  In most cases hospice care givers come into a patient and their families lives when the diagnosis is terminal and the patient has around 6 months until end of life. The purpose of hospice is to make “end of life” more comfortable for the patient and their loved ones. Frankly, most families wait too long for this service because they don’t want their loved one to think they are giving up on them or admit that they are actually facing the end of their life.

We waited too long to call hospice when my dad had terminal cancer and  chose not to have treatment because no medical person suggested it to us. I had gone pick up some meds for him and found myself facing a Hospice office. I went in not knowing what to expect and came out with an appointment to visit us the next day. They came with a hospital bed and all the essentials for his care and set up in the family room. Someone was with the family most of the time and were a phone call away. He died  two weeks later. How I wish we had taken advantage of this months earlier.

HOSPICE and ALS

My experience with Hospice is much different today. My son has ALS. He as been living with it for nearly 20 years. He has been in hospice for 3 years and we both are so thankful that we made the call.

ALS is a fatal disease as you are all aware. There is no cure and there is no treatment. There is also no timetable for end of life. A PALS can go on hospice as soon as they are diagnosed. Our Phoenix Home Health and Hospice in Kansas provides all equipment delivered by Broadway Medical and set up in our home. A nurse visits us at least once a week and has a physician available for her to call and they provide all his ALS meds. (Much better than your Neurologist giving you a diagnosis and telling you to go get ready to die?)  A bath aid comes twice a week. This compassionate group of people have an essential place in our daily lives.

You may have heard that to be on Hospice, the patient needs to sign a DNR. That can be revoked at any time by the patient or his legal medical representative. Bryan has gone to the hospital by ambulance twice since being on hospice  Each time his hospice nurse came to sign a waiver that he was off hospice so he could be treated. When he was released he was signed back in. This is one of the few benefits we as PALS and CALS are offered at no charge. They work together with the ALS local chapter in my area.

As a mother and caregiver, I m asking you to use this valuable aid available to you without cost. Many still say “It’s not time yet or I don’t want my pal to think  I’m giving up on them”. You are taking this advantage of a benefit to make all your lives easier for however many months, years, or decades, you fight this horrible disease.

If you have questions or concerns or just want to talk, leave me a message here and I will be happy to help in any way that I can.

 

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.

www.under1roof.live/living-in-your-place-let-us-help-2/

I would love to help you create a Forever Home! Click this link http://www.under1roof.live/living-in-your-place-let-us-help-2/

 

A Bright Future for Alexis

You might remember our niece, Alexis Armstrong. She is an  amazing 31 year old woman who does not her Cerebral Palsy define her.

Alexis Armstrong is one of the first three graduates from Friendship Fields at Friends University

She has just graduated from Friends University in the Friendship Fields Program while working part time at Families’ Together. The agency helps parents find resources for their children with disabilities of all kinds. Alex has been the spokes person for the agency at fundraising  events.

This fall Alexis will be back at Friends University, not as a student but as  an assistant to Val Wall, the director of the Friendship Field program.

WICHITA, Kan. (KWCH) – Three women from the original class of the Friendship Fields Academy, a Friends University program, will be the first to graduate from the program. The academy is a four-year program that includes college classes modified for those with different abilities. See video

The director of Friendship Fields at Friends University, Valerie Wall, started the program seven years ago. It began with a program focused on life skills and the college experience.

“I taught special education for 32 years, and I always had students come and ask me and talk about going to college, but that was not a possibility for them because they couldn’t do the work required of them,” said Valerie. “They want to go to college and do the things that everybody else gets to do. I wanted to make sure that they got to eat in the cafeteria because that’s a big deal. A big part of college is eating in the school cafeteria.”

Graduates Lauren, Alexis, and Kaitlyn are the inaugural class. The women tried on their caps and gowns and had been practicing their stroll across the stage to accept their certificates before the event.

Alexis Armstrong, a graduate of Friendship Fields Academy, says, “I was able to accomplish something that, before this program, none of us were able to accomplish. It means a lot to me because my dream is to help kids with disabilities. And I feel like

Lauren Herron, another graduate, says, “my favorite classes were foods one and two because I love to cook.”

They said that accomplishing their dreams will help pave the way for others to be included.

“I’m really happy now,” says graduate Kaitlyn Eads.

it’s essential for them, for us to do it. ”

See Video at this link

https://images.app.goo.gl/mQQUVoBsN6tfF4Qb8

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,