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  • mary-klein-john-klein

    Member
    October 29, 2020 at 6:37 am in reply to: Do you have theories about why you have Parkinsons?

    My husband was diagnosed two years ago with PD.  He spent 35 years as a professional firefighter and, during this time, was involved in several major fires including industrial blazes.  When he first got on the department the equipment was inferior to what is being used today.  The stats show that firefighters are diagnosed with PD at a rate 10x the average so we highly suspect this may be the root cause of his disease.  So far, he experiences left-hand tremors (his dominant hand), slowness, tiredness, minor balance issues, occasional night dreams.  Still not on medication and waiting until necessary as to delay any side-effects which seem worse than the disease by some accounts.

     

  • mary-klein-john-klein

    Member
    June 18, 2020 at 9:54 am in reply to: Firefighters with Parkinson’s Disease

    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.

     

  • mary-klein-john-klein

    Member
    June 17, 2020 at 8:05 am in reply to: Firefighters with Parkinson’s Disease

    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

     

  • mary-klein-john-klein

    Member
    May 31, 2020 at 7:36 pm in reply to: KAILO Pain system

    Hi Dale,

    Just a question in general.  My husband was diagnosed a year ago and continues to do well with his primary symptom being a left-handed tremour.  He does experience some slowness but it is more just an inconvenience.  We had a friend who had Parkinson’s for many years and the last three or four he suffered with back pain from muscle spasms (he used a heating pad to relief this).    I have noticed other posts, as well as yours, which bring up pain issues.  Is this pain, which is being referred to, from muscle spasms – or nerve pain?  I am just trying to get a handle on what it is actually related to.

  • mary-klein-john-klein

    Member
    April 28, 2020 at 7:26 pm in reply to: Mental Health Check-in

    We are hanging in there and breathing a sigh of relief that the weather is finally becoming much more pleasant here in Southern Ontario.  There is nothing fun about going out for walks with a cold, biting wind howling at you!  Having a large breed dog to walk definitely encourages us to be outdoors for daily walks.  The whole neighbourhood is out working in their yards so there is always someone on the street to chat with from a distance.  Hoping this will all pass sooner than later!  Thank goodness we aren’t in the middle of January and stuck indoors.  Our Rock Steady Boxing grout is meeting 3x a week on-line via Zoom.  The coaches walk everyone through their fitness regime and it’s working out great.  It’s another way to connect with all the members and see how everyone is doing.

     

  • mary-klein-john-klein

    Member
    March 30, 2020 at 6:27 pm in reply to: Tips to Stay Fit During COVID-19 Isolation

    Our Rock Steady Fitness instructor has arranged at-home classes, through Zoom, three times a week for all participants.  We probably had our first class today.  It ran for the full hour at the same time we would generally be at the gym together.  It was encouraging to see how many joined in – pretty much the entire class.  Lots of waves and laughs along the way.  Great idea for staying connected during this unique time in everyone’s lives.

  • mary-klein-john-klein

    Member
    March 29, 2020 at 9:30 am in reply to: Were you an athlete before diagnosis?

    We, too, believe that one of the best therapies is exercise and keeping active.  My hubby had his knee replaced last June – less than a month after his Parkinson’s diagnosis.  This surgery turned out well – but there will always be certain limitations.  After having joined Rock Steady Boxing in December, once the knee was healed, he has found it to be of tremendous benefit (including even more flexibility in the knee).  He not only benefits from the exercise component but also the social component.  All those who attend are goal driven and willing to fight.  He has had two appointments with the Neurologist and neither of those times did she push medications.  We are coming up to a yearly appointment in June and are expecting that she will stay in this holding pattern.  The only change from a year ago is a tendency for the left-hand tremor to increase somewhat.  We feel the benefits of staying off medication, for now, outweigh the potential side effects of medication.  Good luck everyone – keep on pushing forward!

  • Our best friend struggled through being a full-time caregiver for her husband who had Parkinson’s for approx. 15 years.  Most of those years they did well.  The last 3 or 4 were far more challenging (also his age was advancing – he was 80 by then – but formerly very young for his age – in looks and actions).  If I didn’t know otherwise, I would have thought that she wrote your words!  This is exactly how she describes her journey!  My husband was just diagnosed about an year ago but he is doing very well and not on any medication at this time.  We thank you for your openness and sharing your experience.  Many, on the outside, don’t appreciate or fully understand the role the caregivers have.  I think this is partially because they don’t under the disease.  On the outside, it has certain presentations but the unapparent ones are equally as debilitating.

  • mary-klein-john-klein

    Member
    March 17, 2020 at 6:03 pm in reply to: What’s Funny about Parkinson’s Disease?

    All your posts have been a delight to read.  Some great insights and ideas to ponder!!!

  • mary-klein-john-klein

    Member
    March 13, 2020 at 12:12 pm in reply to: Faith

    My husband (who has PD) and I are optimists I would say.  This disease is such that it is impossible to predict the course it will take.  For this reason, we remain hopeful that his type of PD will hold its own for some time.  We also keep the faith that newer and better treatment options will be on the market over time.  We have just taken the attitude that it is not worthwhile to fret and stew about what ‘might’ happen 5 or 8 years from now as it may not.  We also think that it is more depressing to focus on the future rather than now.  He recently said to me that he never, ever thinks about PD when he gets up in the morning – and he never focuses on it during the day.   The participants in these forums offer some really valuable strategies for coping and addressing symptoms and their comments are very encouraging.  We notice so many positive attitudes which in and of itself is encouraging.  Our main strength comes from having each other as we are somewhat like two peas in a pod.

  • mary-klein-john-klein

    Member
    March 13, 2020 at 11:56 am in reply to: Back pain: anyone else suffer from this?

    Our friend who had back pain used a heating pad.  He seemed to experience the pain when sitting for some time.  So far, my husband does not have any.  I believe it might be caused by muscle spasms.  My husband is enrolled in Rock Steady Boxing 3x a week so is doing a fair bit of exercise, stretching and wonder if this is also benefiting him by keeping muscle cramps at bay.

     

  • My husband first noticed a left-handed tremor about two years ago.  He was not formally diagnosed  until close to a year ago.  His tremor has increased slightly but still very sporadic.  He joined Rock Steady Boxing which has been a great help physically and emotionally.  Still not on any medication but follows/up with the Neurologist every six months.  She will have just returned from a major Parkinson’s Conference when he sees her in June and she is hopeful she will have some new, updated information.  We hope that it is just a matter of time before a new treatment proves to either reverse or stop the progression of the disease.  To live without hope is to give up and this is something we can’t do.

  • Hi Tina,

    If you have the urge to write but typing is problematic, perhaps you could use one of the dictation aids – Dragon for instance.  Then you could get your thoughts down quickly.   This might be very helpful.

     

     

  • mary-klein-john-klein

    Member
    February 13, 2020 at 5:55 pm in reply to: Was it difficult to find the right diagnosis?

    Try and find a Rock Steady Boxing group in your area – it is wonderful for the exercise component and also for the comraderie.  We are finding that you have to be pro-active and do some of your own research -as long as our sources are credible.

  • mary-klein-john-klein

    Member
    February 13, 2020 at 5:51 pm in reply to: Was it difficult to find the right diagnosis?

    We are somewhat surprised that Family Physicians don’t seem to be aware of some of the well-known symptoms associated with Parkinson’s (loss of smell, sleep disorders included) that can be powerful clues and that they seemingly aren’t trained to make an assessment based on gait etc.  Your Neurologist and ours knew within a couple of minutes just through observation.  Once we pushed our Family Doctor to make a referral to a Neurologist, it still took about 6 months to be seen.  Thank goodness we weren’t sent all over like some are before finally landing in a Neurologist’s office.

  • mary-klein-john-klein

    Member
    February 13, 2020 at 5:43 pm in reply to: Was it difficult to find the right diagnosis?

    Hi Ally,

    Yes, once we had a confirmation of the diagnosis, we could at least do some further research into what we could do on a personal level.  One of the first things we discovered on-line was the recommendation to join a Rock Steady Boxing group.  Fortunately for us, there is a group about a half an hour from us.  This form of exercise has been proven to have certain neuro-protective benefits .  Their website is a good starting point if you are unfamiliar with this.  John attends three times a week and actually finds physical benefit but also emotional benefit as everyone attending suffers from varying degrees of Parkinson’s with different symptoms.  They often bounce things off each other and he finds this helpful.  We are also finding this site to be extremely helpful and are so happy we came across it.  He is still not on any medication yet so it is interesting to read some of the comments here regarding medications.

    Also, now that we have a ‘diagnosis’, it is easier to explain to others why they might be witnessing slower movements etc.  We are finding that very few people have a lot of knowledge about Parkinson’s.  We have found ourselves having to tell them that Parkinson’s’ is ‘not a death sentence but it is a life sentence’ if that makes sense.  Most are unaware that patients can often go for years without their symptoms becoming debilitating – and that it is a ‘designer’ disease wherein no two people have the exact same symptoamology  or progression.  Once friends and family become aware of a couple of these facts, they tend to be a little calmer regarding the diagnosis.  We have also decided that we will not live worrying about the future or any specific symptoms that may or may not occur – we have to live for today and enjoy what we have always enjoyed.

     

     

  • mary-klein-john-klein

    Member
    February 11, 2020 at 5:18 pm in reply to: Was it difficult to find the right diagnosis?

    My hyusband was noticing left-hand tremors for a couple of months before he brought it up to our doctor.  The doctor immediately said not to jump to any conclusions – that a tremor could have several causes.  He told him to come back in a few months.  My husband only lasted a couple more months before he went back to see him and asked for a referral to a Neurologist – it took six months before he got in.  In the meantime, I was convinced he had Parkinson’s based on his loss of smell, night dreams, tremor etc.  On our very first visit to the Neurologist, she asked him to walk and did a couple physical tests and promptly announced that he had Parkinson’s.  When we asked her how she was making her diagnosis, she replied that she had been in the field for 25 years and both her brother and her father have Parkinson’s – she lives amongst it.  We often wonder why our Family doctor didn’t just immediately refer to a Neurologist as any kind of tremor is abnormal and should be investigated.  Perhaps he thought he could delay the diagnosis.  I think it is often worse worrying about what it is than actually finding out so you can do something about it.

     

     

  • mary-klein-john-klein

    Member
    February 7, 2020 at 3:28 pm in reply to: Your Amantadine Experience?

    This is encouraging information regarding your mom’s decade of use without severe side effects.  My husband was diagnosed close to a year ago (he had left hand tremors for a few months prior) and, at this stage, since there has been no real progression to speak of, he is still without any medication.  His next f/up appt. with his Neurologist is in June.  We are under the assumption that it is best to delay medications for as long as possible as to allow for longer use of them when they are required.  He has also joined a local Rock Steady Boxing group which he finds extremely beneficial – primarily for the exercise component but also for the companionship of others who have Parksinon’s.

  • mary-klein-john-klein

    Member
    January 19, 2020 at 8:29 pm in reply to: Food Cravings and holes in your socks

    Tony, thank you for sharing your experience with becoming overly-emotional…..my husband has handled his diagnosis much like you – in good spirits and thankful it wasn’t an even worse diagnosis.  He is on no medications at this point (he was formally diagnosed almost a year ago).  However, he also finds that he is more emotional than usual – a sad event on TV can be enough to kick this off.  I therefore think that, with or without medication, this is a trait of Parkinson’s.  He does not feel that he is depressed in any way.  He says he realizes that he has to make adjustments to certain activities etc. that he once did with ease – now he has to compensate but it still doing them.  This forum is a God-send for people to communicate with others that are experiencing the same illness – it is difficult for the outside world to totally identify.  We are so glad we discovered this resource!

     

     

  • mary-klein-john-klein

    Member
    January 13, 2020 at 3:31 pm in reply to: Parkinon's impact on sleep and dreaming

    I was just reviewing some of the topics and came across yours regarding REM sleep disorder.  My husband likely was experiencing this periodically long before he was diagnosed.  His first symptom was a loss of smell which occurred about 8 years ago or so.  He was just diagnosed in May 2019 after having a let-handed tremor for several months.  However, we can now go back, at least five years, and recount a couple of incidents wherein he was dreaming that someone had come into the bedroom and was going to attack him/us.  At the time, it seemed odd that this was a recurring theme – we were totally unaware that it could be linked to Parkinson’s.  When these dreams occur, he usually yells out and tries to defend himself.  I tend to wake up immediately and yell out which awakens him.  Only once has he reached over and pinched my leg without verbalizing anything.  These incidents occur every two to four months or so.  Other than that, his sleep has been quite good.  When he brought up the issue of these dreams to four Rock Steady Boxing teammates, every one of them said they experience this symptom – some even pounding pillows.

  • mary-klein-john-klein

    Member
    January 4, 2020 at 10:19 am in reply to: Memory Issues

    I think, for those people with Parkinson’s that don’t have any symptoms of dementia, it is important that they try not to become overly worried that they will most certainly develop this.  The stats are somewhere between 50 and 80% of patients will have this issue – however, I am sure this figure is so unprecise as so many people with PD are advancing in years and the medical professional cannot accurately tell whether their dementia is strictly age-related or due to their illness.  It is difficult not to ‘expect’ the worst but, at the same time, it is likely mentally healthier to take and wait and see approach.

  • mary-klein-john-klein

    Member
    January 2, 2020 at 5:05 pm in reply to: Boxing and Parkinsons

    After researching on-line for the best resources to help with Parkinson’s, we discovered Rock Steady Boxing.  Luckily, there was a location about half an hour away.  They hold classes every Monday, Wednesday and Friday for one hour.  A full class consists of 30 people.  the fitness trainer running this class went directly to the Head Office of Rock Steady Boxing for his training so follows their recommendations.  Classes consist of about half the time being spent on boxing and the other half are exercises for stretching, strength and balance – weight lifting is also included.  When he comes out of there, he feels he had had a real workout.  We are so delighted that we have access to such a program.  Can’t wait for his  six month re-assessment to see how much improved he is.  He went in there with good stability, balance etc. but we are looking for better speed, posture etc.  Will keep you posted as we go along.  He only joined the beginning of Dec. 2019.

  • mary-klein-john-klein

    Member
    January 2, 2020 at 4:58 pm in reply to: Were you an athlete before diagnosis?

    It is amazing to see how differently this illness surfaces and progresses with each individual.  Thank you for your advice re stress.  This is something we will control the best way we can.  Having joined Rock Steady Boxing has been the best thing for my hubby – he is a social person to begin with but no one understands better than those afflicted by the same disease.  The exercise component has been excellent – I think we are on the right path for sure.  Attitude is everything with this problem and, the more one can surround themselves with words of encouragement, the better it is.  Parkinson’s will not control us, we will control it.

     

  • mary-klein-john-klein

    Member
    June 15, 2020 at 10:22 pm in reply to: Firefighters with Parkinson’s Disease

    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

     

     

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