Showing posts with label Cerebral Palsy. Show all posts
Showing posts with label Cerebral Palsy. Show all posts

Saturday, March 9, 2024

Cerebral Palsy Awareness Month
The Challenges of Feeding



Meet My Son, Jake



Written by Tracy S. Williams, BS, Nutrition Educator. 
Learn more about Tracy at Tracy's Plate


World Cerebral Palsy Day


Cerebral palsy (CP) is a broad term used to describe a group of chronic “palsies”- disorders that impair movement due to damage of the developing brain. CP usually develops by age 2 or 3 and is a non-progressive brain disorder, meaning the brain damage does not continue to worsen throughout life. However, the symptoms damage often changes over time- sometimes getting better and sometimes getting worse. CP is one of the most common causes of childhood disability.

About 10,000 infants are diagnosed with CP and up to 1,500 preschoolers in the U.S. are recognized as having CP each year. The United Cerebral Palsy Association estimates that more than 764,000 Americans have CP. Congenital cerebral palsy caused by a brain injury during a baby’s development in the womb is responsible in about 70% of the children who have the condition. It is present at birth, although it may not be detected for months. An additional 20% have congenital cerebral palsy due to a brain injury during the birthing process. In most cases, the cause of congenital cerebral palsy is unknown, however, some possible causes are:

An infection during pregnancy may damage a fetus’s developing nervous system. They include rubella (German measles), cytomegalovirus (a herpes-type virus), and toxoplasmosis (an infection caused by a parasite that can be carried in cat feces or inadequately cooked meat). Other undetected infections in pregnant women are being recognized as an important cause of developmental brain damage in the fetus.

· Severe jaundice in the infant. Jaundice is caused by excessive bilirubin in the blood. Normally, bilirubin is filtered out by the liver. Often, newborns’ livers need a few days to start doing this effectively, so it’s not uncommon for infants to have jaundice for a few days after birth. In most cases, light therapy clears up jaundice and there are no lasting health effects. In rare cases, severe cases of jaundice can damage brain cells.

· Rh incompatibility between mother and infant can be a cause of cerebral palsy. In this blood condition, the mother’s body produces antibodies that destroy the fetus’s blood cells. This leads to jaundice may cause brain damage in the newborn.

· The physical or metabolic trauma of birth can be a cause of cerebral palsy. This can produce brain damage in a fetus whose health has been threatened during development. Severe oxygen deprivation to the brain or significant trauma to the head during labor and delivery can be the cause of cerebral palsy.


Feeding Skills

Feeding skills have been cited as a contributing factor that can affect the life expectancy of those with CP. Managing these can positively affect the life span of an individual with cerebral palsy. When people with cerebral palsy have feeding and digestive challenges, a nutrition care program can be beneficial. Skilled registered dietitian nutritionists work with physicians to adjust diet, food intake and nutrition supplements to enhance overall health. Effective dietary therapy can be devised to meet the individual’s unique needs taking into account digestive challenges and the ability to properly chew, swallow, and self-feed.

Nutrition practitioners can adjust the textures and consistency of food by pureeing, chopping, and grinding foods for a smoother eating experience. Foods can be softened with broth, gravy, milk, or juices. Liquids can be thickened to improve swallowing. Self-feeding is a skill that significantly enhances the quality of life for someone with a disability, although caregivers, family or friends may still be needed. Speech therapists can teach patients, their friends, or caregivers about adaptive feeding tools that can accommodate different levels of ability. Appropriate techniques can include space between feedings, to allow for natural swallowing, or feeding smaller portions throughout the day. In the most severe cases, some people with cerebral palsy rely on a feeding tube for partial or total nutrition intake. It is important to adjust to allow sufficient time between bites and drinks for natural swallowing. Some meals should be scheduled around medication times to avoid stomach upset, curb appetites and address feelings of being tired.

If a person with cerebral palsy has trouble with asphyxiation, reflux, or pneumonia, he or she should avoid foods, such as nuts, seeds, and hard or stringy foods. Diets can be changed to provide more calories, better balance, compensate for deficiencies and enhance digestion. Vitamin, minerals, and food supplements may help with malabsorption or who tire when eating. High fiber choices can curb constipation while prune and apricot juices may provide natural laxative qualities. Some people with cerebral palsy need to control drooling and aspiration, in addition, use long-term anti-seizure medications can contribute to an increased risk of tooth decay, cavities, gum disease, and bacterial infections. Dietitians may advise substituting added sugars and carbonated drinks with fresh fruits and vegetables. Dentists will encourage proper dental hygiene like regular brushing, drinking fluorinated water and regular checkups

Many people fight stereotypes and those with disabilities are no exception. Barriers individuals with disabilities face begin with people’s attitudes that are often rooted in misinformation and misunderstandings of what it’s like to live with a disability. One misconception is that all people living with disabilities are brave and courageous, but people with disabilities just need to adapt to a currently different lifestyle. Sometimes wheelchairs are used as typical mobility devices rather than for people who are only ill or sickly. In past decades, segregating people with disabilities in separate schools and institutions reinforced the perception that people with disabilities could only interact with others who have disabilities. Any person who does not have a disability can offer assistance, but most people with disabilities prefer to take responsibility for their own care when physically possible both in the community, within all parts of society. It is okay for curious children to ask questions about disability. Discouraging curious children from asking questions teaches children that having a difference or disability is wrong or bad. Many people with a disability will not mind answering a child’s question. People with disabilities go to school, get married, have families, do laundry, grocery shop, laugh, cry, pay taxes, get angry, have prejudices, plan and dream about their future like everyone else. It is important to encourage participation from people with disabilities by providing accessible meetings and event sites. It is important for advocates to speak up when negative words or phrases are used for people with a variety of disabilities.

Cerebral palsy can affect someone who has it in a variety of ways. Some people with cerebral palsy can be impacted by having limited verbal ability, limited cognitive ability, all four limbs affected or just their legs impacted. Some people use one cane or crutch; some people use a walker or two crutches. Some people use a manual wheelchair or motorized wheelchair. Some people may have some nutritional issues due to some difficulty feeding themselves or having digestive issues. You may have met one classmate, colleague or friend with cerebral palsy, but that does not mean even everyone is impacted in the same way by the same diagnosis. All people with disabilities deserve the same level of respect and it is important to help those with disabilities advocate against social misconceptions.


Friday, February 2, 2024

World Cerebral Palsy Day -
Feeding Challenges



Meet my son, Jake.



Written by Tracy S. Williams, BS, Nutrition Educator. 
Learn more about Tracy at Tracy's Plate


World Cerebral Palsy Day


Cerebral palsy (CP) is a broad term used to describe a group of chronic “palsies”- disorders that impair movement due to damage of the developing brain. CP usually develops by age 2 or 3 and is a non-progressive brain disorder, meaning the brain damage does not continue to worsen throughout life. However, the symptoms damage often changes over time- sometimes getting better and sometimes getting worse. CP is one of the most common causes of childhood disability.

About 10,000 infants are diagnosed with CP and up to 1,500 preschoolers in the U.S. are recognized as having CP each year. The United Cerebral Palsy Association estimates that more than 764,000 Americans have CP. Congenital cerebral palsy caused by a brain injury during a baby’s development in the womb is responsible in about 70% of the children who have the condition. It is present at birth, although it may not be detected for months. An additional 20% have congenital cerebral palsy due to a brain injury during the birthing process. In most cases, the cause of congenital cerebral palsy is unknown, however, some possible causes are:

An infection during pregnancy may damage a fetus’s developing nervous system. They include rubella (German measles), cytomegalovirus (a herpes-type virus), and toxoplasmosis (an infection caused by a parasite that can be carried in cat feces or inadequately cooked meat). Other undetected infections in pregnant women are being recognized as an important cause of developmental brain damage in the fetus.

· Severe jaundice in the infant. Jaundice is caused by excessive bilirubin in the blood. Normally, bilirubin is filtered out by the liver. Often, newborns’ livers need a few days to start doing this effectively, so it’s not uncommon for infants to have jaundice for a few days after birth. In most cases, light therapy clears up jaundice and there are no lasting health effects. In rare cases, severe cases of jaundice can damage brain cells.

· Rh incompatibility between mother and infant can be a cause of cerebral palsy. In this blood condition, the mother’s body produces antibodies that destroy the fetus’s blood cells. This leads to jaundice may cause brain damage in the newborn.

· The physical or metabolic trauma of birth can be a cause of cerebral palsy. This can produce brain damage in a fetus whose health has been threatened during development. Severe oxygen deprivation to the brain or significant trauma to the head during labor and delivery can be the cause of cerebral palsy.


Feeding Skills

Feeding skills have been cited as a contributing factor that can affect the life expectancy of those with CP. Managing these can positively affect the life span of an individual with cerebral palsy. When people with cerebral palsy have feeding and digestive challenges, a nutrition care program can be beneficial. Skilled registered dietitian nutritionists work with physicians to adjust diet, food intake and nutrition supplements to enhance overall health. Effective dietary therapy can be devised to meet the individual’s unique needs taking into account digestive challenges and the ability to properly chew, swallow and self-feed.

Nutrition practitioners can adjust textures and consistency of food by pureeing, chopping, and grinding foods for a smoother eating experience. Foods can be softened with broth, gravy, milk, or juices. Liquids can be thickened to improve swallowing. Self-feeding is a skill that significantly enhances the quality of life for someone with a disability, although caregivers, family or friends may still be needed. Speech therapists can teach patients, their friends, or caregivers about adaptive feeding tools that can accommodate different levels of ability. Appropriate techniques can include space between feedings, to allow for natural swallowing, or feeding smaller portions throughout the day. In the most severe cases, some people with cerebral palsy rely on a feeding tube for partial or total nutrition intake. It is important to adjust to allow sufficient time between bites and drinks for natural swallowing. Some meals should be scheduled around medication times to avoid stomach upset, curb appetites and address feelings of being tired.

If a person with cerebral palsy has trouble with asphyxiation, reflux, or pneumonia, he or she should avoid foods, such as nuts, seeds, and hard or stringy foods. Diets can be changed to provide more calories, better balance, compensate for deficiencies and enhance digestion. Vitamin, minerals, and food supplements may help with malabsorption or who tire when eating. High fiber choices can curb constipation while prune and apricot juices may provide natural laxative qualities. Some people with cerebral palsy need to control drooling and aspiration, in addition, use long-term anti-seizure medications can contribute to an increased risk of tooth decay, cavities, gum disease, and bacterial infections. Dietitians may advise substituting added sugars and carbonated drinks with fresh fruits and vegetables. Dentists will encourage proper dental hygiene like regular brushing, drinking fluorinated water and regular checkups

Many people fight stereotypes and those with disabilities are no exception. Barriers individuals with disabilities face begin with people’s attitudes that are often rooted in misinformation and misunderstandings of what it’s like to live with a disability. One misconception is that all people living with disabilities are brave and courageous, but people with disabilities just need to adapt to a currently different lifestyle. Sometimes wheelchairs are used as typical mobility devices rather than for people who are only ill or sickly. In past decades, segregating people with disabilities in separate schools and institutions reinforced the perception that people with disabilities could only interact with others who have disabilities. Any person who does not have a disability can offer assistance, but most people with disabilities prefer to take responsibility for their own care when physically possible both in the community, within all parts of society. It is okay for curious children to ask questions about disability. Discouraging curious children from asking questions teaches children that having a difference or disability is wrong or bad. Many people with a disability will not mind answering a child’s question. People with disabilities go to school, get married, have families, do laundry, grocery shop, laugh, cry, pay taxes, get angry, have prejudices, plan and dream about their future like everyone else. It is important to encourage participation from people with disabilities by providing accessible meeting and event sites. It is important for advocates to speak up when negative words or phrases are used for people with a variety of disabilities.

Cerebral palsy can affect someone who has it in a variety of ways. Some people with cerebral palsy can be impacted by having the limited verbal ability, limited cognitive ability, all four limbs affected or just their legs impacted. Some people use one cane or crutch; some people use a walker or two crutches. Some people use a manual wheelchair or motorized wheelchair. Some people may have some nutritional issues due to some difficulty feeding themselves or having digestive issues. You may have met one classmate, colleague or friend with cerebral palsy, but that does not mean even everyone is impacted in the same way by the same diagnosis. All people with disabilities deserve the same level of respect and it is important to help those with disabilities advocate against social misconceptions.


Friday, December 1, 2023

National Special Education Day and Meeting Children's Nutritional Needs

Special Education Day marks the anniversary of our nation’s first federal special education law which was signed by President Gerald Ford on December 2, 1975. This law is the Individuals with Disabilities Education Act (IDEA).

IDEA made education available to all American children and this day honors the progress that has been made in special education

National Special Education Day was first celebrated in 2005 which was the 30th anniversary of the Individuals with Disabilities Education Act.

In recent years, we have seen increasing emphasis on the importance of ensuring children with disabilities have the same opportunities as other children to receive an education and education-related benefits, such as school meals.

My son Jake, has cerebral palsy and requires someone to feed him. He was brought into the cafeteria with his aid and they sat alone. He asked if he could eat in the classroom because he was embarrassed the children would make fun of him. The school said no. Jake started to refuse to eat - he said he wasn't hungry. Sometimes he would come home with food all over his clothes and face. There is still time to learn how to meet nutritional needs for Special Needs Children.



Florida State Receiver Travis Rudolph Eats
Lunch With An Autistic Boy Sitting By Himself

Autistic kindergartner denied school lunch




References



Wednesday, November 8, 2023

National Family Caregivers Month

National Family Caregivers Month celebrates caregivers everywhere. What caregivers do every day requires superpowers, and though we may not tell them often enough – the care they give matters to all of us.





We know you're focused on the health and well-being of others, but it's important to remember to take care of you. Caring for yourself isn't selfish; it's an essential part of making sure you can give your best every day.

Staying strong as a caregiver

*Stay healthy with proper nutrition

*Eating healthy is the best way to maintain your strength, energy, stamina, and immune system. It's also one of the most powerful things you can do to stay positive.

*Good nutrition for your care receiver helps make care easier

*
Up to half of all older adults are at risk for malnutrition; that's why it's important to make sure those you care for have a healthy diet. It helps prevent muscle loss and supports Rest. Recharge. Respite.


*Make sure to take some time away to re-energize or ask for help. Caregiving can be stressful, and taking a breather ensures that you'll be ready to take on the challenges Find out if you and your care receiver are getting the right amount of nutrients. Complete this nutrition assessment and see how you are doing.


10 Tips for Family Caregivers


  1. Seek support from other caregivers.  You are not alone!
  2. Take care of your own health to be strong enough to care for your loved one.
  3. Accept offers of help and suggest specific things people can do to help you.
  4. Learn how to communicate effectively with doctors.
  5. Caregiving is hard work so take respite breaks often.
  6. Watch out for signs of depression, and don't delay getting professional help when needed.
  7. Be open to new technologies to help you care for your loved one.
  8. Organize medical information so it's up-to-date and easy to find.
  9. Make sure legal documents are in order.
  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!




Monday, October 23, 2023

October 24, Food Day - From Our Garden to Our Table

Welcome to Our Food Day Celebration!
From Our Garden


Food Day inspires Americans to change their diets and our food policies. Every October 24, thousands of events all around the country bring Americans together to celebrate and enjoy real food and to push for improved food policies. 

6 FOOD DAY PRINCIPLES

1. Reduce diet-related diseases by promoting safe, healthy foods.
2. Support sustainable farms and limit subsidies to big agribusiness.
3. Expand access to food and alleviate hunger.
4. Protect the environment and animals by reforming factory farms.
5. Promote health by curbing junk-food marketing to kids.
6. Support fair conditions for food and farmworkers.




Planning Our Food Day Meal
Every family is unique. When planning our meal, we considered foods from our garden, finances, physical abilities, including finger foods and easy to chew and swallow, and color – the theme for our dinner. 

Our family and friends come from diverse backgrounds with physical and emotional challenges or chronic illnesses, such as Cerebral Palsy, Autism, and Heart Disease.


Our Meal
The main course is a tri-color pasta with various toppings to choose from.  Our garden provided us with tomatoes, onions, broccoli, cucumbers, and basil. We purchased spinach, pasta sauce, locally grown fruits, and part-skim mozzarella, and for the meat-eaters, we had ground turkey meatballs and shredded chicken.

In addition, we prepared a red, white, and green grilled cheese sandwich from the US Dept of Health and Human Services cookbook 
Keep the Beat Recipes, recipes. A free copy of the cookbook is available on their website. 


The dessert was a big hit. We made fruit kabobs using locally grown fruits and paired them with low-fat ice cream, and for Jake, we prepared a smoothie using the same ingredients.


Adaptations and Individual Preferences

My son Jake was born with Cerebral Palsy and is quadriplegic. He is unable to hold utensils and requires a straw to drink fluids. Finger foods and a weighted cup with a flexi straw usually provide him the most independence.






Thursday, April 13, 2023

Florida's Home Owner Insurance is Broken:
People's Trust Insurance and Rapid Response Team

Friday, September 24, 2021

Around 7:00 pm, we heard the rain falling hard, lightning strikes, and the loud roar of thunder. This is common in South Florida, so I thought nothing of it. The lights flickered on and off, and there was a smell of something burning, but even the smell was common from the everglades. I checked the house - there was no smoke or fire. I went outside to see if everything was alright. I checked on everyone in the house.  Everything looked fine. I went to sleep.

At 8:00 pm, my son, Jake, called 911. Jake is a quadriplegic. He can use his voice to make phone calls. The 911 operator then called me and told me my son was on the other line. "There is a fire; get everyone out." The fire department burst through our doors, and I showed them where Jake was. I saw the grey smoke and fire coming from the roof. I retrieved the dogs and placed them in a safe place.

There were 4 fire trucks and police officers working on our home for 5 hours. We stood out in the rain, lightning & thunder. My sister and Jake's aide came to help. A neighbor opened his garage to provide us with shelter. I walked around in shock. I asked the Fire Chief what caused the fire, and he said, "Lightning, didn't you hear the crash." 


The last fire trucks left at 2:00am. The Coral Springs Police stayed with us until the Red Cross arrived around 3:00am.

We were allowed to go inside with an officer to retrieve medication, medical supplies, clothes, and important papers. There was very little left. I did place important papers in a fireproof file. I'm glad I did.

As I sat in the doorway of Jake's handicapped van waiting for the Red Cross - I made my first contact with my homeowner's insurance. She had a soothing and comforting voice. She tried to reassure me everything would be alright. She explained the offices are open Monday through Friday, 9am-5pm. It was Saturday at 2am. I couldn't wait for Monday. I had to do something now. 

Sadly, our dachshund Snoopy passed away from the smoke the next day.


The Red Cross gave us emergency supplies and money for a room to stay in for 2 days. It is 14 days later, and we still need help finding temporary housing. We have to leave the hotel by October 23rd (30-day limit).



October 8, 2021. The insurance company has yet to start any work. They want to ensure it was lightning, even though the Coral Springs Fire Chief and their insurance Fire Inspector confirmed 91 lightning strikes in our neighborhood and 5 strikes almost directly over our home.


The worse part of the fire was above my bedroom area; that’s where the lightning struck. Everything in the back part of our home has been destroyed. The remainder of the house suffered electrical and smoke damage. The city can’t turn the power on until an electrician inspects the property. No one has set an inspection date.




We are running out of time. Our 30 days are up on October 23rd.

October 22, 2021

We finally found a bottom-floor apartment that is not wheelchair accessible. We will make it work. I go back to our home almost daily. I sit in the garden with Holly (our beagle). Our garden survived. I get a lot of work done here.

January 2021 (4 months after the fire)

For over 30 years, I paid our homeowner's insurance. Never thought I would ever need it.

I assumed we would be back in our home by now, but they still need to submit the following permits: Plumbing, Building, Mechanical, and 
Notice of Commencement which I signed all of them in January, 

The project manager admitted they still needed to submit the architectural plans due to a lack of payment (I need clarification on that). I started to check weekly on the Coral Springs website, but no luck yet.

February 11, 2022, the electricity was restored to the front of the house, den, and kitchen. Many outlets were covered because they needed to be up to code.

February 22, 2022. They started to replace the roof.

Summary: October 2021 - March 2022

By the end of October 2021, the insurance company had only cleaned out the debris left by the lightning and fire.

Where there should be walls and ceilings, there was a tarp-like material providing cover. There were no closets, office, bedroom, or bathroom. Empty Space. Memories I could only remember through my imagination.




March 3, 2022

I checked the permits today, and the Plumbing, Building, Mechanical, and Notice of Commencement have NOT BEEN SUBMITTED. The roof is waiting for an inspection to put the tiles on.
March 4, 2022 (5.5 months since the fire)

I go back to our home almost every day.  There needs to be more progress on the reconstruction. However, my garden surprised me with strawberries, pineapple, and the start of mango flowers.

June 1, 2022 (8.5 months since the fire).
Jake and all of us are getting restless. We thought the house would be done by now. Susie, PTI adjuster. Robert, the project manager, Jake, my son, and I were on a conference call. Susie asked Robert if the house was condemned. Robert said, "No." Susie said we could move back in now. She allowed us to keep the apartment until July 23, 2022. I was concerned about safety.



June 21, 2022

I continued to go back and forth from the house to the apartment. I am Jake's caregiver at night, so I must return to the house.  I have been sleeping on a couch & storing some clothes in a filing cabinet. Jake lives in a room with one outlet and numerous medical equipment attached. The Project Manager stated he would have an electrician come by in a few days – that was 2 weeks ago. No one has come by. RR and PTI were notified on May 31, 2022, of the possible fire hazards presented by the electricity. We also notified PTI that Jake's Hoyer Lift had blown an engine; the replacement cost was $1800.00. PTI said it was not their responsibility.


July 2022

As instructed by PTI, we all moved out of the apartment and back into the house, even though I had no room, office, closet, or bathroom. No walls and No ceiling. I stayed on the couch until mid-October. 

These photos were taken on July 25, 2022.


This is where I lived and worked during the construction.



October 8, 2022 (13.5 months since the fire).

On October 8, 2022, Rapid Response walked off the job without securing the house's safety. A concrete pit for a bathtub was left with nails, broken tiles, raw concrete, and cement scattered everywhere. The dogs would bring them to us or chew on them. There was a bathtub in my office. My son's handicapped ramp was thrown out in the back of the house.



I finally moved back into my room in mid-October, even though the bathroom, office, and closets still needed to be completed. 

The disagreement was about the walk-in closet and the length of time this job was taking.  Matt (Robert's supervisor) said these closets "were more expensive and custom-made, and these are exactly what you asked for.” He was very angry and walked out. He scared me. That was October 8, 2022. They did not look custom-made for me. I am only 5'2". I could not reach the bottom shelf.

I realized after a few weeks, Rapid Response
was not going to show up.

When Rapid Response walked off, they jeopardized my son’s and my life. They did not make sure the house was safe and secure. This was a concern I brought up in June 2022 about electricity. There were nails, broken tiles, cracked cement, and a missing handicapped ramp.

October  25, 2022

I fell into the concrete pit left by the contractors. 911 was called, and they had to remove me from the filthy pit. I have never seen so much blood. It turned my grey hair red. I am being treated by a Neurologist for a concussion and unstable gait. The arm surgeon is seeing me for a fractured left wrist. I received a tetanus shot as a precaution.

November 10, 2022

I called People's Trust. To my surprise, they knew nothing about Rapid Response walking off the job.

I have a contract with People’s Trust that says I must use Rapid Response. If Rapid Response does not want to finish this job, who will?

My Home Owners Insurance was almost $10,000. Do they have any more contractors?

I have gotten along with most workers, except for the Project Manager. He appears likable and excited about his work. When we first met in September 2021, he was promising things that were not even on the sheet to fix and kept telling us our home should be ready by June 2022, and it would look brand new. He did not have to sell me; I have a contract with People’s Trust that says I must use Rapid Response. I was already sold.

I became frustrated with Rapid Response's lack of work which was overdue, and there was always an excuse, 

December 3, 2022 (15.5 months since the fire)

The house still needs to be finished. I have asked the Better Business Bureau for help. My attorney is ill, so I feel like I'm on my own (I won't do that again)

Rapid Response said I denied them access and did not like the items they purchased. They lied. They had access 24/7, and I chose all the items except the closet. People's Trust was offering me $8,000 to finish a job which I'm not sure what the actual cost would be. They sent it anyway and closed the case.

My attorney returned part-time after undergoing chemo and radiation. He returned the check and reopened the case.


March 16, 2023. (1.5 years since the fire).
I feel this tremendous loss. Here I am in my home, and I still have not unpacked. I have no books or shelves, no bathroom, no office, no clothes, no shoes, and no closets.

All of this has made me mentally ill. Four weeks ago, I was thinking of ending my life. I built this house for my son to live with others after I am gone. Now it is worthless if I can't finish it. 

March 27, 2023
We met at my house: my attorney, People's Trust (PT), and Rapid Response representatives.

As a dietitian, I know nothing about contractors. People's Trust will only allow Rapid Response to do the work. If Rapid Response does not want to do the work, PTI should provide another contractor.

I made a list and photographs of the work that needs to be done.




April 12, 2023
(1 year, 6.5 months since the fire)

After 2 weeks of silence since the meeting, I don’t think they care about fairness. I can not fight these big companies anymore. I’ve researched People’s Trust (PTI) and Rapid Response (RR). They have been doing this for years to consumers. RR walks off a job, and the consumer hires a contractor and tries to reclaim the money from PTI. The consumer loses because they can only use RR. They usually target consumers who hire attorneys or adjusters.

I wanted the meeting with the attornies to get a fair value for the amount of work left to do. $8,000 seemed low, and it turned out to be. I received quotes on just the bathroom at $10,000.00.

They are playing a very dangerous game with our health and well-being. RR can fix our home, but we will not leave. I will move my family to the other side of the house where there is no work to do and no reason for anyone to be in that part of our home. We can not leave again. 

I want my life back. They have nothing to lose by waiting. It has been over 1.5 years. They have already been paid for repairing my home. However, we have a lot to lose. I am getting sicker. I am unable to hold down food, and it is breaking my heart to have Jake see me crying every morning. I need to be able to unpack and start a new life. 
Please help end this nightmare.














Friday, February 17, 2023

National Family Caregivers Day

National Family Caregivers Day celebrates caregivers everywhere. What caregivers do every day requires superpowers, and though we may not tell them often enough – the care they give matters to all of us.

Are you a caregiver to a parent, sibling, adult child, aunt, or uncle? It is not easy, and not many resources. Recently I came across a support group for caregivers. Most were parents taking care of their adult child. It was a blessing. I wasn't alone.








We know you're focused on the health and well-being of others, but it's important to remember to take care of yourself. Caring for yourself isn't selfish; it's an essential part of making sure you can give your best every day.

Staying strong as a caregiver

*Stay healthy with proper nutrition

*Eating healthy is the best way to maintain your strength, energy, stamina, and immune system. It's also one of the most powerful things you can do to stay positive.

*Good nutrition for your care receiver helps make care easier

*
Up to half of all older adults are at risk for malnutrition, that's why it's important to make sure those you care for have a healthy diet. It helps prevent muscle loss, supports Rest. Recharge. Respite.


*Make sure to take some time away to re-energize or ask for help. Caregiving can be stressful, and taking a breather ensures that you'll be ready to take on the challenges Find out if you and your care receiver are getting the right amount of nutrients. Complete this nutrition assessment and see how you are doing.




10 Tips for Family Caregivers

  1. Seek support from other caregivers.  You are not alone!
  2. Take care of your own health so that you can be strong enough to take care of your loved one.
  3. Accept offers of help and suggest specific things people can do to help you.
  4. Learn how to communicate effectively with doctors.
  5. Caregiving is hard work so take respite breaks often.
  6. Watch out for signs of depression and don't delay getting professional help when you need it.
  7. Be open to new technologies that can help you care for your loved one.
  8. Organize medical information so it's up to date and easy to find.
  9. Make sure legal documents are in order.
  10. Give yourself credit for doing the best you can in one of the toughest jobs there is!


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