My Biography

Last updated June 2002.

    My name is Patricia Seguin-Tremblay, but please call me PATSY! I have ALS (Amyotrophic Lateral Sclerosis) or better known as Lou Gehrig’s disease. Why am I telling you this? Well, in telling my story, I hope to help someone else and raise public awareness about the realities we Persons with ALS face everyday.

    Life is a road we all travel. Even though life dealt me a big pothole called Amyotrophic Lateral Sclerosis, I’m still driving! The ride may be rough but I’m always in the drivers’ seat. The choices are forever mine to make. Life is what you make it! I choose to keep going and am continually re-evaluating what normal is? Well- meaning people are going to try to influence us with personal judgements and assumptions but until they drive the road of ALS they just don’t know. Be true to the voice in your heart! God never promised it would be easy.

    So if anybody wants to ride along with me you better fasten your seat belt because the road may be rough but the journey brings many angels and wonders along the way. Don’t get stuck in one place because of the road- blocks people and/or situations tend to throw at you. Find a way around it. Nothing is impossible to me; where there is a will there is a way! That’s my motto. I’m not usually afraid of the roads ahead but some people wonder what the hell I’m doing sometimes when they see me coming.

    I was born and raised in Kapuskasing; a small town in Northern Ontario, Canada and the roads really do have big pot- holes here! Winters here mean real pure white snow and lots of it. Thank God I don’t have to shovel it any more!

    I am now 39 years old, married for the last 10 years to a wonderful man. We have been blessed with 2 beautiful boys, 7 and 10 years old. You can see our family picture on the ALS Ontario website opening page . Our boys keep us busy with sports activities and school; never a boring moment. Family life is always hopping with my family, in-laws, grandparents, nieces and nephews.

    I'm a Registered Nurse, now retired due to ALS. My work experience was in Neurosurgery I.C.U., Urology, E.R., Home Care/C.C.A.C., Public Health, did some teaching, too. Although I was well versed in neurological diseases, I never cared for someone with ALS in hospital. That is because people with ALS are usually considered palliative cases and hardly ever make it to the ICU where I worked. They usually cared for ALS patients in hospice. I did care for my husband’s aunt, Celine Ouellette, through my home- care job but to tell you the truth, you don’t grasp an understanding of ALS going for a few home visits. Our present Ontario health care is so divested in the communities that most health care professionals never fully get the whole picture. And I’ve been told by reliable sources, that our Ontario C.C.A.C’s are so busy that they don’t have time to even read the resources the ALS Society makes available to them. You simply can’t plan or care for an ALS case without that knowledge base. The different specialties only get a small piece of the ALS puzzle and I found out that only the ALS Clinics are well rounded with a holistic approach. That’s my patient/nurse life ALS experience!

My health problems seemed to start in 1991 with increasing fatigue and thyroid problems. The fatigue thing was out of character for me. They used to call me the "little French nurse with the fire up her butt" in Toronto. But the fire up and went in 1991, needless to say I'm not little anymore. Then in 1995 my right dominant hand started twitching and cramping. We thought then that it was carpal tunnel and had no EMG! I had surgery and my hand got worse in the spring of 1998. I started falling that year, too, I rationalised it as me being a “klutz”. I had always been a klutz! Well I had fallen many times in those early years and broke my left ankle in early March 98. I feared falling doing home visits and having the patients looking after me! Wouldn't that be a sight? I resigned from work Sept. 1998, at the same time of my diagnosis.

    The year prior to my diagnosis, my gait got wide and stiff. My right leg was especially rigid and both legs had been hyperreflexic for as long as I could remember. I even remember in Nursing School during the physical assessment lab we practised on one another and was found to have a positive Babinski reflex.

    I also had hormonal menstrual problems for two years prior to 1998 since the birth of my second son. My immune system always seemed to be low with recurrent bouts of inflammation of the outer covering of the heart (pericarditis) since my early twenties and strange recurrent flu’s that wiped me right out occasionally requiring hospitalisation and intravenous therapy.

    Anyway, during that time my Doctor attributed my symptoms of fatigue to a mild depression and stress, so the Doctor was pushing Prozac! Then during the carpal tunnel thing and fractured ankle, my Doctor moved away and I had to find a new Doctor. This new Doctor never had seen an ALS case before either! At this time, I had to beg to be referred out to a specialist, since my new doctor didn’t know my case yet. I knew something was wrong for a long time!

    Finally, in July 1998, I had my first Electromyography (EMG), a procedure where needles, hooked up to a monitor, are inserted in various muscles measuring the electrical activity of the nervous system. This EMG showed a motor neuron problem and was done by Dr. Rastogi, in Sudbury, Ont. I was in shock! I knew with my neurological experience, that meant a big problem but how would I explain this to my family. I tried to explain this to my family as simply as I could but they were either in denial or hoping the second opinion would prove this wrong. When I got home, I researched motor neuron diseases on the net and my nursing books but my search results were grim. I was scared; I worried about my children and had many crying spells.

    I was still working at that time for Home Care/C.C.A.C. and Public Health. It was very difficult, physically, for me handling syringes, intravenous connections, ... and lugging around my nursing bag felt like it weighed a ton. Any task requiring fine motor skills or general physical strength was a big feat. My employers were very good to me during that summer giving me light duties.

    I was then referred to the Toronto Hospital September 1, 1998. The very hospital where I had worked for 10 years prior to moving back home. It was a weird feeling being the patient there rather than the nurse. I saw Dr. Vera Bril there; "The EMG Queen", she is the best in Canada for EMG’s so I’m told. Although looking back, that EMG was the most painful and traumatizing of all of the 3 EMG’s that I’ve had over the past years. She bluntly; and I stress bluntly, confirmed the ALS diagnosis (I thought it was M.S.!). My husband broke down crying right then and there. I had to be the strong one then.

    Dr. Bril referred me to the clinic at Sunnybrook on Oct. 6 where I got the second opinion with Dr. Gawell and Dr. N. Cashman. There I was diagnosed with a slow onset Sporadic ALS. So now it’s been 4 years living with ALS since my diagnosis but I believe I’ve had it for 6 or more years. I've had a third EMG since in March 2001 in Ottawa with Dr. Bourque.

    Since my diagnosis we’ve had time to prepare ourselves with what is to come, being realistic but hopeful for a cure. The children have been told the truth over the years of what is happening with their mom. We have had professional counselling to help them understand what is going on around them. We have used the following as resources to help explain ALS to our children; “Grandpa, What is ALS” written by Bonny Gold-Babins and another resource from the Cancer Society, “When a Parent is Sick, Helping Parents Explain Serious Illness to Children” written by Joan Hamilton, R.N., B.N., MSc.

 In the last 4 years my symptoms have progressed to the point where I need assistance from someone or a wheelchair to get around. I can still walk short distances with assistance.  My hands and arms are very weak causing me to require assistance for showering, dressing, etc. and also with eating. I get spastic when nervous, crying or laughing. But what I don't understand is my physiotherapist says I'm too flexible! My physiotherapist warned me not to overstretch anymore, that once my muscles lose their function I’d only have the overstretched ligaments to support my bones! And if my ligaments were too loose I'd be a bag of bones later! My balance is poor but I am careful and have not had a fall for over 2 years.  My speech is slurred and only my regular caregivers understand me; it sure is frustrating. I've tried a head mouse and didn’t like it, so am now using the wivik onscreen keyboard with a joystick mouse by 3M, typing is really slow.

    We’ve had handicap accessible renovations made to the house and van. It sure gets expensive but we've been blessed with having financial assistance from the Ontario March of Dimes and the Ontario ALS Society. We've put in a wheelchair ramp at the back and had a 36" wide door put in. I now have a renovated bathroom as well. I have a ceiling track lift from the bedroom to the bathroom.

    I also have my permanent power chair by Invacare-Pronto with power tilt through Adaptive Devices Program (ADP) and our private insurance. But getting properly functioning pieces and servicing for this has been an ongoing problem. This is because servicing through the ADP Central Equipment Pool (C.E.P.) is by Shoppers’ Home Health Company, which has the monopoly! There is no competition as they hold the contract with the Ontario provincial government for the equipment pool for wheelchairs and accessories. My husband and I continue, and have spent many countless hours and long distance phone calls, trying to get servicing problems sorted out.

    We’ve had to push hard for everything and there have been many tears, anger and frustration. But with help from different people, organisations and by the GRACE OF GOD we have managed.  It has been a lot of work!

In our little town we have a circle of angels that help my family and I. That circle is comprised of family, friends, neighbours, C.C.A.C., the Canadian Red Cross Personal Service Workers, my Doctor, my Chiropractor, all help out in any way they can. With the stark reality of what was to come with this ALS monster, I decided I had to organize all these offers to help in 1999. It was not easy for me at first to be cared for, the nurse in me still wants to care for others. I had read an article on the Internet about a person with ALS and they had created a system of caregivers to help out. I e‑mailed the author of the article to find out how they went about organizing this help. She briefly shared her story of caring for her sister with ALS, and suggested the book, "Sharing the Care: How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnocks". So I ordered the book, which turned out to be an excellent resource.

    I could not organize this by myself, so I called upon Jacinthe Laforge my Kapuskasing C.C.A.C. Social Worker. I gave Jacinthe the book and things took off from there. Jacinthe did all the coordination and plans. She did a lot for us, even using her own personal time to coordinate our endeavours. With the outline from the book and the ALS Society of Ontario things just took off.

    So myself, my husband, my mom Jackie Seguin, my mother‑in‑law Ginette Tremblay, and Jacinthe started making a list of people that made offers to help. Jacinthe contacted them all personally. We then organized an in-service about "What is ALS, How to care for a person with ALS, etc." presented by Sarah Walker of the Sudbury chapter ALS Society of Ontario. Sarah had personal experience where she helped care for her brother‑in‑law with ALS until his passing. The group of volunteers found the in-service very informative and were moved by her sharing personal experiences with ALS. Sarah Walker and the ALS Society of Ontario still continue to help us and our care giving volunteers on an ongoing basis.

What do I think the causes of ALS are? Well, firstly, I believe that there are different types of ALS, each with a different cause. I believe that predisposing genetics, stress, bacteria, virus and other micro organisms not yet identified, are contributing factors. In my case I believe that my genetics, stress, the Lyme bacteria, mycoplasma, Babesia, ehrllichia and the glandular system that control our hormones are messing my muscles and motor neurons.  Our laboratories are barely keeping up with newly discovered micro organisms and researchers have to develop cost effective lab tests for them to use, and that takes years! I’m not entirely convinced that ALS starts in the motor neurons, it may start in the muscles or a hormonal imbalance thing. Something like what came first, the chicken or the egg? So research has the burden to prove the causes of ALS and we know that it takes time and money. I also believe that today, stem cells offers us real hope. But if the cause of ALS is an infectious process that will have to be corrected first before we can benefit from stem cells!! So those are my personal theories on the causes of ALS.

Things I've tried and am trying!

1. Rilutek, I tried it in the fall of  ‘98 but it caused severe gastritis to the point of bleeding. It also made me so bitchy I couldn't even stand myself. I tried Rilutek on 3 different occasions with the same results; I chose a quality of life rather than a 3-week extension of prognosis!

2. Neurontin, I tried also in the fall of  ‘98 but when the research studies showed that Neurontin had no effect on Lou Gehrig's disease I tried to wean off. I got depressed so I decided to stay on it for its antidepressant effects.

3. Elavil, I started in spring of 1999 to help me sleep and dry up oral secretions. I'm still taking it.

4. Diflucan, I started in spring of ‘99 - 3 times a week for 4 months. I saw no effects and discontinued it.

5. Vitamin E, I tried the 3200 IU a day for about 6 months then noticed bruising and at that time my platelets were below normal. So I stopped for a month than resumed it at 1600 IU a day. I have not taken any since 2001.

6. Plaquenil, I tried May of 2000 but discontinued it after 3 weeks because it also dropped my platelet count.

7. Quinine sulphate, I tried May of 2000 but discontinued it after 2 months because it made me severely ill. I was taking it for leg cramps at bedtime; it relieved the cramps but gave me severe vomiting, diarrhoea, headaches, eye pain and high temperatures with red rashes.

8. Olive leaf extract, I've been using since December 1999 and stopped June 2001.

9. Genistein and estrogen patch, I've been using since the fall of ‘98 and have found that if I forget either, my ALS symptoms get worse. So as a woman I know these help me.

10. Supplements/vitamins, the others supplements and medications are routine to PALS, antioxidants and such.

11. Acupuncture, I still continue with weekly acupuncture.

12. Chiropractic adjustment weekly or as needed. 

13. Therapeutic massage, every 2 weeks.

14. Lyme disease, I've been researching the Lyme's thing thoroughly over the past 2 years. I've been in contact with Pat Pepper via e-mail, an ex Florida mayor that was diagnosed with ALS by ten top Neurologists in the States and turned out to be Lyme's disease. Hear Pat Pepper’s story here http://www.lymediseaseaudio.com/.  Every month lately it seems a PALS gets a positive Lyme's test, there has to be something to it.