Firefighters with Parkinson’s Disease

[Dan DeMinno]

Hi Mary and John. My name is Dan DeMinno and have been diagnosed with PD in Sept. of 2019. My condition is similar to Johns. Here is a little about myself . I am a 63 year old retired NYC firefighter. I worked in an extremely busy fire house in the Bronx. I worked many days and nights down at ground zero on 9/11 and after from which I firmly believe is where I contracted PD. I have been diagnosed with a very early stage of PD. I have slight left hand tremors, rigidity in my left arm. My voice seems hoarse a little more than occasionally. I lost my sense of smell a few years ago. Other then those symptoms I’m feeling pretty good. In my opinion the key to slowing down the advancement of this disease is staying very active with exercise. Probably about 5x a week for 2 hours I workout in my basement(family room) doing a 2 mile walk on my treadmill some days light weight workout others crunches. Then a 10 min. hang on my inversion table then finally an hour of stretching and ti chi. I’m in good spirits hoping for a cure soon. be safe to all, Dan

 

[John Cox]

Hi Mary, Dan and John. . . . my name is John Cox. I am 50 years old and a career firefighter in the Hudson Valley New York (about 60 miles north of NYC). I currently have almost 19 years on the job and have been in private sector EMS since the late 80’s. I was diagnosed in 2017, however, I was symptomatic (although we didn’t understand at the time) probably closer to 2012. I am still working, however, I have been reassigned to a desk job which is easier on me and less stressful since I don’t have to worry about my partners getting hurt because of me.

For those of you in New York State pay attention to NYS Senate Bill S8012 / NYS Assembly Bill A9917  introduced this year to recognize Parkinson’s Disease as a presumptive for Career Firefighter’s

Stay Safe!

-John

[Mary Klein / John Klein]

Hi John,

I am getting back to you regarding your note above.  It seems that your State has already begun the process of recognizing PD as being a job-related illness.  Since I wrote my initial comments, I have been in touch with an Australian FF who is a similar situation to yourself – diagnosed and suffering with PD and still on the job in a different capacity.  He has sent us a copy of his 26-page Research Report that he submitted regarding his own case.  My husband and I have decided to submit a claim to WSIB here in Canada so we have therefore asked him whether. we could share his report.  He is of the belief that all firefighters have to band together regarding this cause and encouraged us to go ahead and share this with anyone interested.  If you would like me to forward you a copy of this report, perhaps you could send us an email to [email protected] then I can attach it.

Kind regards,

Mary (and John) Klein

Welland, ON   Canada

 

 

[Michael R. Scott]

Dear Firefighters,

I am glad to see that more firefighters are finding there way to this site! I was 29 years with the Salt Lake City Fire Department as a Firefighter/Paramedic and Captain. I am now 74 and was diagnosed about eight years ago. During my carrier I had about 5 concussions and 5 Hazardous Materials Exposures. I had stayed in pretty decent physical condition since my discharge  from the Army and Army National Guard (U.S. Special Forces) 1963-1673 and through out my FD Carrier. My Physician feels that it was my fitness that kept me from being diagnosed sooner. For you fellas that are making fitness training part of your therapy, it might be insightful to know that when my gym closed for about 90 days, I found it very hard to duplicate the “Nose to Toes” regimen I had followed three times a week since I started in 1962 at age 17 (To qualify fo SF). During that time, my tremors got worse, rigidity increased, sleep got worse and my dose times got closer. My gym reopened about about three weeks ago and with my routine returning all of those problems have begun to be reduced. One note: Now I have to wear a mask in the gym. After a lot of trials, I found the best mask was one with two exhalation valves (one on each side) and five layer (95) inbound air filter with ear loops and a Velcro strap at the rear of  my neck. They are about $30 on Amazon and $20 on Wish. The breathing is easy like I’m not wearing a mask (similar to our positive pressure masks with a nose cone).  In my opinion, the best way for us to enjoy our pensions longer is to stay fit or fitter than we were on the job!
Good Luck Guys,

Mike Scott

[Mary Klein / John Klein]

Thanks Mike!  You live in a beautiful area – been there a few times for Conventions.

Your input regarding your change in your exercising routine, upon the closure of gyms, and now a gradual return to your previous norm speaks volumes about the benefits of ‘activity’.  The Rock Steady Boxing classes here have also been banished from the gym so Zoom classes are taking place.  Of course, equipment is limited.  Hopefully the gyms will get the go-ahead soon.  We went to Phase 2 in the Niagara Region this week meaning outdoor patios, hair salons, shopping malls etc. can open.

Firefighters with Parkinson’s is being studied thank goodness.  We responded to a survey, to this end, posted on the FB group – ‘We are Firefighters with Parkinson’s Disease’.  There are 24 members in the group.  You have some great info to share and they might appreciate it.

Even though John’s diagnosis was only 1 year ago, we can trace the first symptoms back years – the loss of smell and unusual same-themed dreams of someone coming after him/us.  The tremor started almost two years ago.  Our recent consult with the Neurologist ended up with the conclusion that no medication is required at this time.  It is our understanding that it has a certain time span of efficacy.  We are trying to hold off on it until such times as either the tremor increases or spreads or doing regular activities is too compromised.  Members of the Rock Steady Boxing group have suggested that ‘older’ Neurologists favor holding off until necessary but younger graduates seem to go for meds right at diagnosis.  Any thoughts on this one way or the other?

Well, time to get moving around here – nice to chat!

Regards,

Mary and John Klein

 

[Michael R. Scott]

Mary,
I believe you put your direct e-mail on this forum, but I can not find it. I wrote you a longer return letter before I realized your’s was on this site. My direct e-mail is [email protected]. I would like to get my response directly to you and John.
Mike Scott

[Rob]

Hello Firefighters,

I am glad I stumbled across this, because it is not something that I have given a lot of thought to. I am not a firefighter, but I actually have 2 connections to this situation:

– I completed most of my degree in Environmental Studies, where we discussed at length, the relationship between toxic chemicals and neurological disorders. I can only imagine what may happen when you burn chemicals that are already toxic in their normal state.

– I was employed in the park management field, where I sprayed Gramoxone and Killex and others, with a 100 gallon tractor attachment. I also used a lot of metal based marine paints, which were ground off and re-applied annually. This was all completed well before we became safety-aware. Little or no protective gear was utilized.

[Mary Klein / John Klein]

Hi Rob,

Nice to have your input!  I think, as time goes by, more and more evidence will emerge as to the factors involved in some cases of Parkinson’s Disease.  Our dear friend had PD for 14 years and passed away a year ago.  Just recently as report was issued (it is posted on this site) with respect to exposure to diesel fuels being linked to PD.  He drove for the Toronto Transit Commission for decades.  Another previous neighbour of ours had PD and was also a retired driver.  It seems we are only beginning to learn about some of these links.   It seems that your profession also had many dangers associated with it and, like many others, no precautions were taken – especially years ago.  Firefighting equipment has evolved over decades but, when my husband and likely some of the others on this forum started their careers, the equipment was inadequate for their needs – but nobody was overly concerned and, if they were, the situation went on for way too long.

 

[Michael R. Scott]

Mary,

Your John and I also have several things in common. I have had 5 surgeries in the past 20 years. My right hip had to be replaced two times, then my left shoulder had to have a bone spur removed and the muscles repaired, then my right shoulder for the same problem and finally my left hip. An interesting thing happened in recovery room as I was waking up from my last surgery to replace my left hip about 10 years ago. The nurse handed me a paper cup of ice water, which I took with my left hand. I began to scatter it all over as my left hand began shaking badly. When I grabbed it with my right hand everything was ok. My nurse asked me how long I had had that shaking in my left hand and my answer was “about 10 seconds ago”!!

Several months later I was seen by a Neurologist and Parkinson’s was the diagnosis. After a review of the surgery it was ruled that I had a reaction to the stress of the surgery and the anesthetic… He believed I had Parkinson’s for some time as I had lost my sense of smell and several other indicators years before…

I began taking Propranolol and Tremoraid for the Familial Tremor that I inherited from my Dad about 25 years ago, at age 50, while I was still on the job…..

Mike Scott

[Rob]

The greatest challenge with all of this, is finding the relationship between cause and effect. Some of the things we do to ourselves may not reveal consequences for decades. As armchair scientists, we can speculate what possibilities (or combinations of) might be at work.

When I worked for the park spraying gallons of chemicals, I booked off work at 4:30, then drove to a quiet place in the park until I felt well enough to drive home in my car. The symptoms I felt daily were identical to what I feel today, except in 1981 and 1982 the wore off in an hour or so. Now they are 24/7.

In 1992, I took a position as a construction technology teacher in our local high school. For years after starting, I heard students talk about how much they liked my predessesor, but it was a shame he only lasted for 2 or 3 years. In 2005, when I was diagnosed, I finally asked for the details of his early departure, and much to my surprise…

Working in the trades involve exposure to chemicals, excessive noise, vibration, electromagnetic fields, metals, dust from stone and wood and on and on…  I think we can all agree there are  serious health risks here, but pinpointing the exact relationship is a needle in a haystack.