Terri’s very rare MND-PLS to ALS diagnosis

Hello, My name is Brandi, I am the oldest of Terri’s two children, and on behalf of our family, I humbly come to you all asking for your help and prayers. Many have asked what they can do so I have had to put my pride on the back burner and set this Gofundme up with hopes that you will find it in your heart to give what you can, as I have had to quit working my full time job at Redstone Federal Credit Union to stay home to care for our mother. I miss my work family and had planned to be there for the duration of my working years. The disease she was recently diagnosed with called PLS- Primary Lateral Sclerosis has other plans. And I know God has a bigger plan. It is a very rare MND-Motor Neuron Disease and I am learning that it often gets left/lost in the shadows of the more common ALS. Most of us have probably heard of ALS. But more than likely, like us, you have not heard about PLS. PLS is considered like a cousin to ALS is how her neurologist described it. With PLS not being as fatal as ALS, one will have to live years, prayerfully and selfishly in our situation, many years with the physically debilitating effects that it has on the body, in my mother’s case she lives with daily muscle spasms, coordination problems, and speech problems, intense body tenseness that causes nausea feelings with breathing issues and trouble swallowing that are also part of the disease. Everything that she does is very delayed. She is very slow. Some symptoms can be lessened with medication. Her mind is fine and she is still the person she has always been. We talk about life and current events every day.  She loves weather and Johnny Depp! I want to say thank for your interest to help us. As your help is quite urgent. And I want to encourage you to research this disease. No donation is too small. And is very much needed and greatly appreciated.

Terri was diagnosed this past year with a very rare form of Motor Neuron Disease called Primary Lateral Sclerosis (PLS). It affects your voluntary muscles. To look at her you would never know anything was wrong with her. When she starts to talk, walk or tries to pick something up it makes you wonder if maybe she has had a stroke. That’s what we thought years ago when she started showing symptoms. Since her diagnosis is new for us, and the fact that it is so rare, there is still alot we are learning. It’s so rare that during her present emergency stay at the hospital, we found out that very few of the medical personnel we had interaction with had ever heard of it. Her neurologist says that there is no known cure. Treating her symptoms and adapting is about all that can be done. Our mother’s neurologist said that he is one of less than 5 doctors in our state that treats patients with PLS and he has maybe 20 patients. 

Almost 8 years ago, she began having difficulty with leg cramps, spasms, headaches and just plain old exhaustion, among other fairly normal medical ailments for just about any one of us. She had a very mentally and physically demanding job as a Merchandise Receiver for Target at that time, which she LOVED and would still be doing today she says, if she physically could. She loved the challenge it brought her everyday and most of all the people! We thought a lot of it was from her job. As she was approaching retirement age, she decided to go part time because her health just didn’t seem to be getting any better and she wasn’t getting any younger. She retired from the full time position and continued working part time for at least another year, until she just couldn’t do it anymore. She started developing severe muscle cramps and spasms throughout her legs and a lot behind her thighs that would nearly cause her to be immobile and would interfere with sleep almost nightly. Then she started falling. Within the past 7 years, she has had a fractured elbow, broken ankle (tibia and fibula) and now is recovering from surgery she had on June 28,2022 from a fractured femur at the hip, because of another fall. Once she gets off balance or stumbles, she can not catch herself to try and stop the fall. She doesn’t have that reaction. It’s like she freezes and just goes down. There have been many other falls as well, which have required trips to the ER for scans of her head. On New Year's Eve a couple of years ago she hit her head on the walkway outside from falling backwards. She has also fallen forward from tripping, causing her to have teeth work done. A more recent fall caused her to need stitches above her eye from losing her balance walking to the bathroom. 

For many years, she has been very diligent on keeping track of her health because she is also diabetic. About 5 years ago, she started going to all different kinds of doctors to try and get to the bottom of her health issues. After a stay in the hospital with C-Diff, we started really noticing her speech slowing and slurring. A neurologist had diagnosed her with dysarthria. So we went with it for a little bit and other things started being more noticeable. Mainly her balance was off and she was dropping things when she would pick them up, if she could grip whatever it was. She was also having trouble with buttoning shirts and pants. The spasms in her legs had become so bad and more frequent that even after they would let up, she was so tense and stiff that she couldn’t hardly relax from the pain and was scared for the next one to happen. The spasms alone exhaust her. The fatigue was also worsening. During this time she had to have her whole thyroid removed, during what we were hoping was going to be a partial removal due to growing nodules. Although, because it tested positive as cancer, the whole thyroid had to be removed. Thankfully, no chemotherapy or radiation was needed.

Her symptoms were not getting any better and seemed to only be getting worse. Test after test and doctor after doctor, showed nothing to be abnormal. We decided she should go to a different neurologist for a second opinion. We were thinking her symptoms were more like those you see with MS- Multiple Sclerosis. But he ruled that out pretty quick. He sent her to an oncologist to completely rule out any possibility of cancer. She even went through a very painful bone marrow biopsy that the oncologist suggested. That came back normal as well. No cancer!  Praise God! With all of her symptoms we had described to him and the time frame of when they started and where she was, the neurologist did a nerve test and saw some abnormalities. Finally something! He was leaning towards ALS- Lou Gehrig’s Disease or PLS - Primary Lateral Sclerosis. In which, from our understanding, there is not a definitive test to obtain a diagnosis for either of those diseases. Time and symptoms would hopefully give a diagnosis. Although we finally had somewhat of an answer, this was a very scary time. FYI…She is a researcher at heart! Anything you want to find out about she will research it to the end on Google, on her phone and do her best to get you any information that you want! And Yes, she had tried to self diagnose herself several times throughout the years. As some of us do at some point in our lives, especially when going through anything to do with your health. As time went on, we still continued follow-up appointments with the neurologist and at his request, got a third opinion from another neurologist in a different state. Many other diseases such as Stiff Person's Disease and vitamin and mineral deficiencies were ruled out by him. 

As time has gone by and seeing her progression and process of elimination, this past year they finally have been able to officially diagnose her with PLS, being on the border of ALS. Primary Lateral Sclerosis, from what we are understanding, is described as a cousin to ALS- Lou Gehrig’s Disease. ALS is fatal. With PLS you can live 10, 20, 30+ years. The doctor says she will not get any better and only time will tell if and how her health and physical limitations will decline. The weakness, causing balance issues that causes falls is what needs to be prevented as much as possible. With aging alone, she turned 70 last year, any type of broken bone can be a harder recovery. When you have a debilitating disease on top of that, it could take even longer and more care/help is needed to help her accomplish healing, much less accomplishing everyday tasks that so many of us may take for granted. Imagine there being nothing wrong with your mind, knowing what you need to do and your body says NOPE! Just doing simple tasks such as talking, picking up a utensil without dropping it or picking up your drink without spilling it (even with a lid) because you’ve dropped it, dressing and undressing, stepping into and out of the shower, walking, cooking, it is all almost impossible for her. She needs assistance with almost everything. Every ounce of her breath being used up and she’s exhausted from doing any of it. Every day. Some days are better than others. This is what she lives with unless a cure is found before she and the few others with this very rare disease take their last breath. There is so much she still wants to do and see and experience! And she deserves to be able to do as much as she can. We want that for her and to be able to see her enjoy it. Her body holds her back.

I have lived with my Mama for the past 11 years. My husband passed away 10 years ago from a long, hard fight with Stage 4 colon cancer. The year before he passed she purchased the rental mobile home my husband and I were living in with our two children so she could be here for us. She has always been my rock. We laugh as much as we can, to keep from crying most days. I love to hear her laugh! To see her comfortable and smiling, that’s what makes me happy. I am so very thankful to have the relationship I have with my Mama. She is my “Built-in Best Friend For Life”. To hear that BUMP! out of nowhere, when you are in another room or outside, is the scariest feeling of all. She finally asked me one time, “Why do you always ask me if I fell??” as she laid on the floor. All I could say is “I’m sorry”. She is at home by herself while I work during the week, as I have been working a full time job. We have made the difficult decision that she can’t be by herself anymore once she is discharged from the rehabilitation hospital. So I have resigned from my full time job, which I am truly going to miss, to eventually work part time doing something from home so I can be here for her more. That is my plan but I’m sure God has a better one.  She tries and wants to do stuff around the house so that it’s not all on me. But with her instability it’s just too much of a risk.  I have been caring for her the best I can, working full time and trying to take care of myself. I’m doing this because we only get one Mama and she’s mine. Honor thy Mother and Father comes to mind when I think of my wonderful parents. I can not just leave her leave her in a bed in a nursing home and wither away. She has way too much life left in her. She deserves to enjoy her good moments and days surrounded by her family, friends, and pets in the comfort of her home. She is on medications for diabetes, blood pressure, anxiety, etc. and all of her blood work always comes back normal. She is slow when she speaks and has a hard time saying what she means sometimes and gets frustrated. Because I am around her so much I can almost know what she is needing. She just deserves to be comfortable with no more worries. To add to her fracturing her femur, last Monday June 27, 2022, that same day, we received the call that a 2nd mammogram done the previous week still came back abnormal and she needs to see a specialist. She will have many doctor appointments, along with physical therapy coming up. As soon as dr appointments and rehabilitation have somewhat settled down, I will be working to have a constant source of income again. I have a few ideas in mind but am open to suggestions. I will continue doing things with mama that her occupational and physical therapist are doing with her now. My sister, who has health issues herself, said she will help out as often and as much as she can. We are all trying to take it a day at a time. And breathe. 

My sister, brother in law, and myself have talked a lot about different ideas of what to do. Right now though, we just need to focus on getting her through rehabilitation and her coming home. A mobile cart / electric wheelchair would be so helpful for her stability. She definitely needs a easily accessible shower and some new flooring. A recliner that helps lift her up would also be very beneficial for her. My sister and brother-in-law built a very nice ramp about a year ago for Mama to get in and out of the house a little easier on, that still needs a few reinforcements done. Many other home modifications have been needed to be made for a while now. Her mobile home is over 20 years old. Things such as the easier accessible shower, her bedroom and bathroom doors widened, some flooring redone are some of the really important things needed as soon as possible. I feel that making her home more accessible and easier to maneuver throughout, without so much fear of falling would make it much more comfortable and healthier for her. There is a grant through the ALS organization that she can apply for that could reimburse her up to $3000 for the bathroom modification. But we have to pay for the modification first. We have just been making-do with what we have been afforded. Now, one of my worst fears for her has happened and we can not wait any longer. We need your help.

We humbly ask that if you feel led to gift us anything (funds, labor, supplies, anything), it would be very, very much appreciated so that we can make Terri as independently comfortable as we can. Any monetary gifts would go towards making her home more accessible, medical bills and equipment, her overall personal care, as well as our monthly bills. We ask for your prayers and positive thoughts above all. That she be able to have comfort and peace and have pain free and successful rehabilitation in which she is doing so very good with! That her doctors, nurses, therapists and caregivers have compassion and understanding with her so she can heal properly and recover smoothly, so that she can get back home soon to her family and puppies that she loves so much and that love her so much, very very soon! 

If you have read this far, we want to let you know we appreciate you taking the time to read about our journey. This isn’t the end of it, only the beginning. Our hope is to bring attention and awareness about this very rare debilitating disease and to see more treatments found and most importantly, a cure very soon for Motor Neuron Disease,  PLS- Primary Lateral Sclerosis is what she has. We feel so strongly about it that when the Great Physician above decides her time here on earth is done, Terri has made the decision to donate her body to science, which there is a cost for as well, so that further research continues long after.

Treatment of primary lateral sclerosis involves the use of drugs to help control specific symptoms. Medications may be prescribed for spasticity, cramps, and for muscular contractions until science makes more advancements. The only possible improvements in her quality of life will come from home improvements, equipment and any assistance we can obtain through family members and the generosity of people like you.   

I encourage you to research Motor Neuron Diseases, Primary Lateral Sclerosis. 

For information regarding our journey and Terri’s progress, I will be creating a Facebook page as soon as I can and will put the link up when it is completed. We appreciate you all!

#beblessedandstaystrong