I am Martha McCullough
In the fall of 2014 I was standing at work one day and fell; I thought it was weird.
This was written in January of 2023 – updates are at end.
I am writing this as so many of you ask and I thought I would put all down.
In the fall of 2014 I was standing at work one day and fell; I thought it was weird. It happened a few more times and then I was out for a cigarette (2 years smoke free – October of 2020) and I got a sensation like I was going to vomit and my legs would not move but eventually they did. I would have to hold onto people or the wall to not fall.
I had a pain in my knee so saw an orthopedist and he ran tests and saw a tear in my knee but after two sessions of therapy he sent me to a neurologist who ran a battery of tests and said I had MS. I read up on it and then I had trouble talking. I asked her about it and she said that is not a symptom. She prescribed techfidera and I got sick from it and then aubagio and I saw no improvement and went from a walker to a wheelchair on occasion. She next prescribed Ocrevius which I read about and it had high risks and only for patients under 50 – I was 58.
A friend told me about an MS clinic opening through St. Barnabus Hospital. An appointment was 9 months away and then they got a new doctor and I saw him in 3 months. When I met with him he said that he reviewed my records and did not feel it was MS. My spinal tap was misread by the first doctor. He ran more tests and referred me to the head of ALS at Robert Wood Johnson/Rutgers. I met with him as now almost totally in a wheel chair and he said he felt I had a form of ALS. He did the test, which is an EMG and said I had a form of ALS which is PLS (see end of story for info).
I started searching for ALS doctors but there were very few and in Hackensack and Neptune. By this time my husband was ill and could no longer help me as I could not walk and with no therapy it was impossible. I found doctors in Hackensack but no way to get to them as I gave up driving and the cost for a transport was almost $1,000 per trip. I could not afford this – per month and insurance companies do not recognize PLS (see below for info on PLS) so they cover none of the bills.
By this time I was in New Hampshire and met a saint, Amber Stalker, through ALS of New England, she should head ALS for the country – as she helps and goes above and beyond. She found many doctors but they all required a referral. My doctor at Rutgers had retired – never notified and the web page still showed him as practicing which is why I needed referrals. They closed in late 2022. I was rejected by ALS at Dartmouth and could not get into see a neurologist as I needed a referral.
I hit a period of lowness and many times looked into ending my life. I was getting worse and worse and could not get help. This occurred in New Jersey 2020 and I was becoming a burden to all.
I woke up one day and thought what are you doing. Make this better. Through Rebecca (my daughter) I got into reading and joined ten online book clubs and joined NetGalley and BookSirens (requires reviews); became an ambassador for ALS; through work I became involved in EMentors exchanging emails with a high school student; I am an admin for an ALS group and a moderator for two groups through Facebook and an ARC member of three authors (read their books and give a review before publication). I am fortunate as my job encouraged me to work from home and set me up to do so.
When I posted on my Facebook group I could not find a doctor someone wrote have you tried Synapticure (see below).
I emailed them and heard from them immediately and the woman (Dana) said I will have a social worker reach out to you – that day – November 21. Since then I have seen a doctor monthly (see below), met with an insurance expert, met with social worker weekly and met with a genetic counselor.
My doctor is amazing and started me on Bacoflen and my meeting on Wednesday he increased it and that day I was notified by my pharmacy they had received a change to my prescription. My doctor has ordered therapy, a machine where I type and it speaks, he has ordered so many wonderful things. He feels my diagnosis is nearer ALS but ALS is not a death sentence as there are varying degrees. Also, insurance pays. When I get to New Jersey I will be seen by an ALS doctor in Hackensack – they cover transportation to run tests but Dr. Faber will still be my main doctor. At the end of the appointment I told him how wonderful he was and he said you have made me see courage in a new light. He then asked me if I would be interested in sharing my life with people who deal with depression with ALS. Of course.
I have reached out to four politicians and none of them have responded.
Update: Dr. Faber and the wonderful Crystal got me into CareOne. I have been here since April 15. I could do nothing – I can now pull myself up with grab bars, wash up, learning to transfer and done so much more. These men and women are remarkable therapists. They arranged for me to have a lung test and an EKG for medications. They introduced me to I AM ALS and Dr. Bedlack which have amazing programs.
I want to make a difference and willing to work to see laws changed and help in any way I can. I will do anything.
