Meet Elliott Fike: Former Firefighter, Present Parkinson’s Pugilist

I met Elliott Fike through Facebook. Elliott has Young Onset Parkinson’s disease.

Welcome to Parkinson’s Journey, Elliott. You were a firefighter, is that correct?

Yes, I was a Firefighter/Paramedic for the Bazetta Township Fire Department, located in northeast Ohio, in Trumbull County.

Was it a childhood dream to become a firefighter or if not, was it a ‘grown up’ decision?

This was not a childhood dream, but what lead me to firefighting was that I was talked to by a member of the department who asked me to join and give it a try. I began in 1981 as a junior volunteer and have been in the business since for 28 years.

What did you enjoy most about it?

The enjoyment initially was the rush that you would get on a fire or EMS call. Now, it’s knowing that you did make a difference in the life of an individual.

When did you first notice ‘something’ was wrong? What were your symptoms?

Several years ago, I had a lot of people, constantly asking why I looked angry and had no expression on my face. I could not answer, other than to say I was not angry.

I noticed a small tremor in my finger, and I also noticed I would become easily fatigued. I was an avid weightlifter/strongman. I would work out with weights and thought that it was due to me getting older and my body was not taking it like a younger body would.

I would change workouts, take time off, but none of this would really help. I was unable to do a lot of the outside work at the pace I was use to. I just took assumed again that it was due to growing older and perhaps some stress.

About two years ago, my muscles would twitch and there were involuntary movements with my body. Tremors haven’t really been the problem as they have been minor. After I would workout at the gym or do any work, I would be unable to move, have severe body–wide pain and severe stiffness body wide. My hands and feet would cramp. I was beginning to think I had perhaps overworked the muscles and this was the problem. It came to a point where my wife noticed I was shuffling my feet more, and would tell me to pick up my feet. I could not – it was like I just could not pick them up. Stairs were harder, I was known as the person who would fall going up stairs. This was due to the dragging of my right leg catching on the lip of the step, causing me to fall forward.

I am learning how to do certain tasks a different way, and I have help from my son.

How old is your son and how has he helped you?

My son is 19 years old. He does some work around here that he knows may be dangerous.

How did your wife respond to your diagnosis?

She experienced her father having Parkinson’s disease, and he passed away in June 2008. She knows the frustration, especially when doctors do not want to come out and say that you have Parkinson’s, but some sort of mental illness.

What did you do when you found out you had Young Onset PD? What was your response and what action did you take?

We did some research, and the symptoms matched a variety of neuro disorders, but what stood out on some was Parkinson’s. I have been referred to doctor after doctor who would range in diagnoses from telling me that I am fat and depressed and need sleep, to I was putting on a dog and pony show.

My present doctor believes 70 percent of what’s wrong is Parkinson’s, but still believes there may be another factor here due to other symptoms that I have. She did place me on medication with improvement in symptoms, but still has not given her 93 percent diagnosis at this time. She stated the only way I would get 100 percent is by dying and having an autopsy.

She really said that? Was she kidding? I’m not questioning you – I’ve just never heard of that.

No. She is not kidding. In fact, now she has reneged her diagnosis, stating that she never gave it, when in fact, she told me to my face she was at the 70 percent. But this statement is not a joke. She will not give any higher diagnosis than a 93 percent, which has now put me on the list to have an autopsy.

I have accepted the fact of having a movement disorder.

How do your family and friends cope with your PD?

Well, family does well, as far as friends, I cannot answer that. I have not been contacted by anyone, or asked by any friends how it is going.

Elliott, what (if any) are your greatest fears?

The biggest fear I have is reaching the final stage and needing someone to constantly take care of me.

I think that’s one of mine, too. I suppose it’s not so much a fear as much as a feeling of becoming a burden to someone.

Do you take part in support groups? Would you recommend support groups for people with PD?

No, I do not belong to support groups, though I do see a psychologist who feels that I have handled my PD well and would be more of an asset to those with the disease due to my caring ways and the talent to be a motivational speaker. I would recommend support to those who do have a problem of coping with this disease.

What sort of things have you spoken on in regards to PD and where have you spoken (lately)?

I have not spoken yet due to the doctor not giving me the diagnosis completely. I cannot understand why with the symptoms and signs, and on one hand telling me yes, and then stating in a report that she has not given the diagnosis.

What is the greatest obstacle you’ve had to overcome?

Currently, I am filing for disability. With this disease, along with the side effects of the medication, I cannot be a fireman any more. The greatest obstacle is doctors who have the attitude that people my age cannot have Parkinson’s and try pushing it off as another problem. Even when the medication for Parkinson’s works, they still do not believe the problem is Parkinson’s.

I know I am not alone in the crowd. I have read a lot of stories of other patients. It is sad, and I now know why depression is a big factor. Being told you need sleep or are faking, when you know something is wrong, can make you crazy. And – I am still fighting this. Even with a Parkinson’s doctor. We know our bodies – they don’t.

I think many of us can agree with you in regards to feeling crazy when no one believes you have something wrong (because they can’t see it). It is frustrating.

You mentioned depression. Do you find you struggle with that (or did) and how do you cope with that, other than more medications?

The depression is not from the problems of the illness, but from the hassle I have been through from the medical profession. When your own primary doctor believes it is anxiety disorder, and my psychologist who has been treating me for a year and a half, states that there is no anxiety disorder, you have to wonder what to believe. I tremor, get stiff, shuffle, cannot write well, pain. I think part of the depression is when someone important shows a sign, they have it, but the general population shows the signs and symptoms, they are automatically diagnosed with a mental disorder.

What is the greatest thing you have learned from having PD?

Believe it or not, those doctors should receive more training in recognizing this disorder in younger people. I have learned to do different tasks in a different way to complete them. I will not let this disorder own me, but I will own it.

Do you have any hobbies and if so, what are they?

I have a wood shop. I build numerous projects from small to large. I also refinish pieces of furniture or wood work. We do have one rule of the shop, when the wife is not home, I cannot play with the power tools.

If you could leave our audience with a word of wisdom and/or encouragement, what would it be?

Do not give up. Refuse to be told that it is all in your head if you are still in the process of a diagnosis. We know our bodies better than anyone. Do not let this disease own you, own it. As much pain, stiffness, and tremors I have, I make sure everyday I do something and not sit. The mind is very powerful. I did not ask God why me, I ask God, what is it you want me to do. Become an inspiration, there are some people who will have difficulty in dealing with the diagnosis, but life is not over. I will talk to anyone who is having this difficulty. Two years and numerous doctors, was actually made to take a psych evaluation. But throw all you want, I will not falter.

Anything more you’d like to add?

This has been a painful road for me. To have doctors tell me that it is all mental. I read through my primary doctors notes from the last year and on everyone, he wrote, Anxiety disorder. He refuses to assist me in any way with this. A doctor in Cleveland Clinic, a movement disorder doctor, also stated an organic brain disorder, but believes this is a mental disorder. A local doctor actually said to me, that I was fat and depressed and needed sleep. It is time, that neurologist, movement disorder doctors receive more training in the recognizing Parkinson’s in the young. It is demoralizing, degrading, and embarrassing to be told this over and over.

Thank you so much Elliott, for sharing with us. I am awed at your perseverance and insistence. You are a fighter and I know there are many at PJ who believe in the power of prayer and will be praying that God brings the right physician your way that fully understands what you’re dealing with and can help with determination to give you the best care and compassion. Those kind of doctors, though sometimes hard to find, really do exist.

And for all of those at PJ and/or who struggle with the issues of having a chronic disease, there are other issues such as healthcare that Elliott is fighting. Please pray for relief for him and his family. If you have a story that you’d like to share to encourage someone else, please let us know! Next interviewee: Kris Kessling – Painter, Poetry writer and Parkinson’s fighter!

~Sherri

Tagged As: chronic illness, living with pd, parkinson's disease, PD, pd support groups, yopd, young onset parkinson's disease