Help Support the Farmer Family as Mom Battles ALS

Hi, my name is Denise, I am 58 years old, and I am in the end stage of Lou Gehrig's Disease (ALS).

What Is ALS?

Amyotrophic lateral sclerosis is a fatal type of motor neuron disease. It is characterized by progressive degeneration of nerve cells in the spinal cord and brain. It's often called Lou Gehrig's disease, after a famous baseball player who died from the disease. ALS most commonly affects people between the ages of 40 and 70 of any racial or ethnic group, although it can occur at a younger age.

ALS is one of the most devastating disorders that affects the function of nerves and muscles. As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, twitch, and waste away.

The average life expectancy after diagnosis with ALS is two to five years, but some patients may live for years or even decades. Each person with ALS progresses at a different rate and can experience dips, dives, and plateaus in their own progression.

Eventually, the brain loses its ability to initiate and control voluntary movements. ALS does not affect mental functioning or the senses, such as seeing or hearing, and it is not contagious. It is a particularly cruel disease as the victim’s intact mind becomes trapped in a body that cannot respond.

Eventually, ALS affects the control of the muscles needed to move, speak, eat, and breathe. Most deaths from ALS are the result of respiratory failure, a process that progresses slowly over months. There is no cure for this fatal disease.

Update April 4th, 2024

• My legs are paralyzed.

• I am dependent on my kids for all transfers. They get me out of bed, put me to bed, and on/off the toilet.

• I cannot roll over in bed without assistance.

• I am in my powerchair all day.

• I am nearly devoid of muscle throughout my body. I have lost a great deal of weight.

• Both of my shoulders have lost all muscle. I can lift my arms to about 45 degrees.

• Both of my arms have a very limited range of motion. My left arm is the worst.

• I can type with my right hand, but it hurts. My left hand lasts for about 5-10 minutes before it cramps up.

• I cannot lift anything heavier than a small plastic (empty) bowl.

• I cannot take care of daily needs such as bathing, dressing, brushing my teeth, brushing my hair, and so on.

• I can’t open any cans, cartons, jars, lids, etc. Nor can I pour anything into a cup.

• I cannot speak and be understood. I use a whiteboard for quick communications. For longer conversations, I have an app on a borrowed tablet that speaks what I type.

• I cannot eat real food as I cannot chew or move food around with my tongue. I am living off homemade and ready-made thick protein shakes. Some days I try to eat the broth out of thick soups.

• I cannot leave the house. This house has stairs at each entrance.

Aggressive Care (My Family is Aware)

I am refusing all invasive life-sustaining measures. No feeding tube, tracheostomy, or ventilator. I am waiting for God to take me naturally.

No False Hope

I hold no hope for a cure. I have accepted that I have a terminal disease and I’m not sure how long I have left. I pray that God will take me soon before I am completely incapacitated, but mercy is not the nature of this disease. My wish is to ease the burden of caring for me as much as possible because this responsibility falls directly on my children.

Hospice Care

I have been in home hospice care since the middle of May 2023. It has become extremely difficult to do the simplest acts of daily living by myself. My hospice team is wonderful. They have secured needed equipment and prescriptions. They also are helping me deal with the frustration, sadness, and accommodations needed as my health, speech, swallowing, and ability to care for myself decline.

HOUSING

I am a single parent of 5 teenagers/young adults. When this GoFundMe was created, we were renting a home in Grand Blanc that was too expensive on my disability income and unsafe for my medical condition. We purchased a modest home in a historic district (subdivision) of Pontiac in the summer of 2023. The new house is big enough that my kids can all live there together to share expenses and grieve together when I pass. It is also better suited to taking of me as I decline. I do not have the words to express how thankful we are to everyone who has donated to this GoFundMe. Without your contributions, we would not have been able to secure suitable housing.

What We Need Help With

• Funds for past and future medical bills and equipment.

• Funds for house repairs.

• A vehicle for Abby to drive to school and dance classes from our home in Pontiac. Her Early College classes are held in Farmington Hills, and her dance studio is in West Bloomfield. Her siblings are taking turns driving her back and forth.

House Repairs

This is a beautiful house, but it came with a lot of undisclosed repairs. Our real estate agent suggested that we sue the seller, but that doesn’t help us right now. I have spent all my savings on the inside repairs, and no money left for the outside issues!

1. Garage: The garage is structurally unsound. It needs reinforcement (leaning), a new roof, new doors (side door and electric door), and it has serious drainage problems when it rains.

2. Back Door Overhang: The wooden overhang at the back door is not up to code. The seller tore down a screened porch (don’t know why) and put up the overhang right before they put the house up for sale. It needs to be a new roof and structural reinforcement. A contractor looked at it and said that it would not survive a Michigan winter and that it would take the siding off the house when it came down.

3. Groundhog infestation: A family of groundhogs are living under the front porch. Their tunneling is messing with the foundation of the house.

4. Backyard Fence: The fence is in dire need of painting and repair (or replacement).

5. Driveway: The driveway is shared with the neighbors to the left. The driveway is in terrible shape with deep cracks and potholes.

6. Steps to Front Door: The concrete steps going up the front door from the sidewalk are cracked. The steel handrails are broken.

7. Basement Flooring: The basement needs new flooring in two rooms. Someone covered the basement drains with carpet, which molded and had to be torn up.

About Me

I have been a K-12 and college educator for nearly 20 years, broken up by a decade-long hiatus as a full-time mom and several years working in the IT industry. I started working for Grand Blanc Schools as a computer science/math teacher in the Fall of 2017, taking over the teaching position of the beloved Charlie Carmody. I have met so many truly amazing young people at Grand Blanc High School. I stopped working for GBHS in February of 2023 after a bad fall/hospitalization. I was given an official diagnosis of ALS on April 5th, 2023.

My ALS Journey

Like most patients with ALS that eventually got that official diagnosis, I am not sure how long I have had ALS. For certain for at least 1.5 years, but potentially up to 2.5 years or more. ALS is one of the most difficult diseases to diagnose. It is often referred to as a disease of exclusion.

In the late Winter/Spring of 2021 I started having difficulties with profuse swelling in both legs, but more in my left leg. I busted the straps on several pairs of sandals. I bought different sandals with buckles so I could loosen them as the day went on. On one occasion, after a long day/evening in the same pair (dance recital rehearsal day), I had to cut them off, and I ended up with a bad rash for a week from the straps gouging into my skin. I was eventually diagnosed with congestive heart failure and put on a strong dose of daily diuretics to reduce the edema.

In the Fall of 2021, I started having intense muscle cramps and shooting pains in my left leg from my hip to my toes. This happened all day, but most noticeably while I was sleeping. They were like the Charlie Horses that I got when I was pregnant but more severe. There were many of them, all night long, and they lasted longer. The swelling got worse. My cardiologist doubled the diuretics.

The cramps and shooting pains started abating. But then I noticed that my left foot was slapping the floor, and my left hip started collapsing when I walked. I started tripping over my left foot, stubbing my toes on things, and stepping on my bent-under toes when they got caught on the carpet. God knows how many toes I broke.

I went to my primary doctor, a foot doctor, two rheumatologists, and eventually a neurologist. I got passed from doctor to doctor. By February 2022, I bought myself a cane because it was getting very difficult to walk. I fell frequently, even at school. There’s nothing like falling in the hall in the middle of a bunch of teenagers. I developed this weird gate of swinging my left leg out to the side to clear the floor. My ability to stay upright was tedious. Once I fell, it was extremely difficult to get back up because my left leg was useless. Someone had to physically pick it up for me and put it into the proper position to pull it up. My legs weighed too much from the long-term swelling. But, at that point, I still had the strength to pull myself up using a chair or a wall.

I had an MRI of my back that showed three pinched nerves (L3, L4, L5), one nerve at encroachment (S1), and every degenerative disk issue possible throughout my back. I had an EMG that showed mild neuropathy in my left leg. My neurologist said that since nerves regrow at the rate of about 1 inch per month/1 mm per day, in a perfect world of no more pinched nerves, I could get my left leg back in about two years. There was hope. So that was the answer. ALS never came up.

I started having problems with slurred speech in May of 2022. My neurologist sent me for an MRI of my brain, which showed that nothing major was wrong, just basic aging. ALS never came up.

In May of 2022, I was prescribed physical therapy three days a week for the whole summer. Although I had been unable to go up/down the front steps for months, I could get down the garage stairs with a cane to get to the car, and I could drive myself to the appointment without having to hold up my right leg to move it between the accelerator and brake. Getting to and from the building was difficult, but I did it. I faithfully did my PT at home every day. My right leg got a wee bit stronger. My left leg was still useless. The left foot drop was still a huge problem, but I got an AFO brace that made walking easier once I got used to it. I left the house only to go to physical therapy and to go grocery shopping. My youngest daughter shopped while I waited in the car.

Then came the Fall of 2022 and I had to go back to school. I was terrified thinking about how I was going to manage to get in or out of the building, walk around my classroom, walk to the bathroom, and so on. I was totally dependent on help from my son and daughter, a senior and freshman respectively, to help me exit or enter the house safely, carry my bags, get to my classroom, and so on. My doctor suggested a rollator, but I was determined to keep walking with a cane. After several falls, I succumbed because I had no other choice. As a face-to-face teacher, the stress of worrying about whether I could keep doing my job was tremendous.

Meanwhile, that Fall, swallowing started becoming a problem. My throat was so sore, and I was choking/gagging trying to swallow my prescriptions. I noticed that I couldn't chew in the front of my mouth, but I didn't think anything of it. In late November, it occurred to me to look at my throat in a mirror. I went to an EMT who ordered an MRI of my throat, which showed severely enlarged tonsils. I had them removed over Christmas break. ALS never came up.

On the day that I tried to return to school after my absence for tonsil recovery, in January of 2023, I fell down the garage stairs and rolled my left ankle. That made ambulating very difficult. My son had to drag me down the school hallways, with me sitting on my rollator, from then on. I couldn't make it down a single hallway without pain, and later, profound weakness in my legs.

In early February of 2023, while attempting to get down the garage stairs to go to school I suddenly felt unusually weak in my legs. I got down the steps but then I couldn't pick up my feet. My legs felt like they weighed a hundred pounds each. In my attempt to force them to move, both of my knees buckled at the same time, and I fell on the concrete floor of the garage. When my kids found me, I could not speak. It was garbled nonsense. My son drove me to the emergency room, and I was admitted. That was the end of my working career.

My new neurologist, who saw me at the hospital, told me that he thought it was either ALS or Myasthenia Gravis. He refused to provide an official diagnosis until I went to an academic neurological clinic for an EMG and nerve study, which I did at Henry Ford Hospital in Detroit. I was officially diagnosed with ALS on April 5th, 2023.