funny where life takes us

Funny how life changes and surprises us, when I was a kid the only thing I ever wanted to do was fly airplanes. It was my dream to fly for a living and I did, I spent all of my working life for the most part flying for an airline, it was everything I thought would be and I loved it. Along the way I also became a sailor, if fact that was the retirement life my wife and I dreamed of. About 10 years ago things started to change. I began to notice that while on the sailboat my balance was “off”, I just didn't feel comfortable moving around on the boat. I always told my wife, who came to sailing years after I started, “always hold on one hand for you, and one for the boat”. That didn't seem to work too well for me anymore, stepping off the boat to a dock started to be a real trick, a few times it didn't quite go as planned, I missed or tripped or something. My wife was beginning to think I was a secret drinker. My walking in general was off balance. Then other things started, my mood was getting hard to live with, I was becoming depressed, It was much more noticeable to my wife. I went to a Dr and he gave me an antidepressant, told me not to worry it wouldn't show up on a drug test. He didn't tell me he was going to tell the flight surgeon. Up to then I had no problems with 6 month checks, and my every 6 month flight physicals. I went into training for a new airplane and for the first time in my life I was having problems with training, trouble concentrating, finding my hands would sometimes not go where I wanted them to, strange things. I was developing more of the non-motor symptoms, no tremors but slowing down, just getting stiffer, getting harder and harder to climb in and out of the seat.

For my next flight physical my Dr passed on to the flight surgeon I was suffering from depression and taking med's for it. My career was over, just like that. The antidepressants had been helping, maybe saved my marriage so I couldn't quit those, the psychiatrist and the therapist weren't helping. I started driving tuck over the road, the worst job I ever had. Good for some not for me. Then Christmas morning 2007 things really changed, I got out of bed early in the morning and collapsed, passed out for just a few seconds but everything changed, went up a notch so to speak. About 3 years of testing for everything they could think of. One Dr said “I'll make sure to note your multitude of symptoms, “ and that was it. Never saw him again. They did find a cervical spinal steno sis, which had caused some nerve damage. Now I was disabled and could no longer work, but something else was wrong, still no tremors. More tests, having strange muscle movements, twitches, fasiculations, another test for ALS, now it's getting scary, but no it wasn't that. Finally a neuro gave me sinemet, IT WORKED! We now knew. We were pretty sure what it was, it is so easy to research on the internet now. Finally we knew the demon we had to fight. Not good news, but a relief.

The reason for saying anything about this is to let people know a bit about how hard it is to get listened to for one thing. There is so much more than just tremors and dyskineasa to this. There are people with PD who don't realize there are some of us with no tremors. In our support group there are 3 of us, over all about 30% of pwp don't have visible tremors. If people learn more about the not so obvious parts of this thing, maybe more people will think about the possibility of PD and get relief. It is all in how the rest of the world sees it.

12 Replies

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  • Thanks for your interesting story.

  • My husband is an herbicide induced Parkinson's patient who also has minimal tremors. His case originally presented as frequent falls, small illegible handwriting, and a soft, hard to understand voice. The kids and I begged him to see a doctor...this wasn't the boisterous, do-it-all husband/Dad we all knew. In our ignorance, we suspected some kind of mini-stroke. Of course, once I mentioned the voice and handwriting, she said, "So you're thinking Parkinson's?" I was dumbfounded...he had NO visible tremors at the time (although he told us that he did "feel" a tremor-like jolt deep down inside). As I mentioned, he now has minimal tremors. His cross to bear, is being virtually chained to his wheelchair...he can't walk 5 feet without falling, and he's 6'2'', 250lbs to my 5'4" 130lbs! So much for the retirement we had planned (we're 63 & 62)! Back to the drawing board...anyone have any suggestions on the best and easiest ways and places to travel with an electric wheelchair? And to olpilot...our prayers are with you for finding a new, joyful way to travel!

  • Yes, so much for the retirement we planned. It's hard not to think about the way we thought it would be, especially when we live in an active adult community.

  • Additionally, have you checked into travel by train?

  • Just because things are not good at the moment does not mean they cannot get better. Try 2 simple therapies for his Parkinson's the first is from Sao Paulo Brazil in which doctors had PD patients quit eating red meat and started taking 30 mg of vitamin B2 every eight hours. Their symptoms significantly improved:

    drjoemcnamara.com/riboflavi...

    Also, listen to the following interview on Parkinson's Blog Talk Radio:

    blogtalkradio.com/parkinson...

    It features Lexi, a 62 year old woman, who has Parkinson's but has effectively treated it by taking Low Dose Naltrexone. LDN has to be made at a compounding pharmacy and is a drug FDA approved to treat drug and alcohol addiction at 50 mg a day. The dose required for PD starts at 3 mg a day and 'peaks' at 4.5 mg. LDN has to be made at a compounding pharmacy and she mentions Skip's in Boca Raton Florida. Skip will speak to your neurologist about the benefits of taking LDN. Also, since it has not been FDA approved for PD, you will have to tell your doctor you will 'take it at your own risk' to relieve his legal responsibility if anything should go wrong. All this information is spelled out in the interview.

  • Yes, thanks for your story. Gait impaired PD is harder to diagnose. In my case the symptoms appeared right after the untimely death of my son and were dismissed as "grief' and "old age." I was sent for physical therapy which is actually very neuroprotective. The physiatrist recognized that I had tendonitis and sent me to the neurologist who started me on sinemet.

  • Thank you so much for sharing Olpilot! Very enlightening! Took 10 years after seeing my first Neuro, to be diagnosed the same way as you were. Went to a Neuro in Chicago, instead of messing with the local Neuro's in the suburbs for 10 years! Why no one even tried sinemet is beyond me? That's how I was finally diagnosed too! Bingo! Quite easy! 10 years! And all your dreams are gone! I am in the middle of LSVT Therapy right now and I suffer from so many aches and pain after every visit, that I'm not sure it's worth it! I keep telling myself, I am going to have pain and just deal with it because I'm using muscles I haven't used in 20 years. But I am beginning to wonder if I'm just torchering myself? Until they actually get going and show some interest in us as people, nothing is ever going to change! It's just "here try another pill." and bye bye dreams and life! Just making pharmaceutical companies rich! Does anyone care about us as humans?

    Sorry got carried away there. I hope and pray Olpiilot, that things improve for all PWP!

    Blessings,

    Carol

  • Thank you for your reply I think the biggest problem is people don't think people die from parkinsons disease they die with it. It's mostly an old person's disease. I think they need to see the dark side.

    Bless you

    Steve

  • I also am no tremor bradykinetic with dystonias.... lots of anxiety and depression. in that DBS is best at tremor rigidity and freezing control, has anyone had success with our constellation of symptoms?

  • Thanks for that.' It's good to talk' as the BT ads used to say. I keep promising to write a blog but typing me ages & I lose the plot. However my PD was almost certainly due to organo-phosphate poisoning (pesticides- weedkillers, sheep dip etc).Dx took took over 30 yrs I do have tremor BUT I have my sense of smell & my writing hasn't got smaller (or tidier),

    Re travel: tlongmire rail travel seems a good option until you see the fares - or until something goes awry on your journey. Rail staff are very caring I've found but they lack support if something unscheduled happens..I suspect this is always the case not just for folk with mobility problems. Re retirement: my enforced retirement began 9 yrs ago at 55. I had really loved my work but I knew something was stopping me from doing my best. Like many people who've made sacrifices in their working & social lives to accommodate family, buy homes & cars etc I had planned to make up for this in my retirement. Apart from the pain & other limitations due to PD I manage quite well although my world is shrinking daily.

    racingchaplain: Does anyone care about us as humans? Not as much as if we were pets!!

    Re pharma companies: try not to be so cynical - it's wasted energy. They are in business to make a profit - they may also be motivated by genuine desire to alleviate suffering. At least they are 'transparent'. The people to watch out for are the minority of sadists who practice in the 'caring' professions. Not everyone who becomes a teacher, nurse, doctor etc etc is motivated by compassion.

  • Hi....I usually just sit back and read but this was very familiar territory....I too at least for now don't have much for tremors except when tired and trying to reach for something,which may or may not fall on my head....Had the crooked arm/hand symtom(there's a name for it can't think of)for a long time, loss of smell for yrs,finally couldn't finish signing a check until had a mile long line behind me at stores, feeling I was going to tip over,and stumbling....blamed it on "older age" ....I was, well still am an artist.Thought nothing of painting wall murals and furniture etc. Hah!...after asking about my hand,etc therapists and prim.care for couple of yr had a mri..asked dr about it,said nothing showed up except my brain had shrunk..normal at my age..and I thought it good that I at least had one! Then a therapist finnaly agreed something was wrong as at that point I was kind of curled up in the chair. Sent a note to pc to send me to a neurologist, which thankfully she did.Me being the dumb dumb didn't realize exactly what that had to do with me..put me on sinemet said call if I feel better..which I did immediately..was overjoyed and thought well thats great I'm o.k......yah right....nope.PC..didn't really tell me what to expect so of course went to computer...that was an eye opener!PC said guess you didn't expect this for your golden yrs. Nope. Started having back trouble ,still no tremors...sent me to 2 diff. physical ther....went from cane to walker..they kept saying stand up straight...could not ..like pushing against brick wall...got worse...the pc was getting miffed w me cause I could not stand up for any length.....only hot packs helped....getting worse..went to aqua therapy for awhile....then started having wicked stomach problems.Advance a lot more months in agony...Did all the tests'stayed away from certain foods, ate tums and drank awful stuff...pc as much as said I had to live with it,neuro said it was pc's problem and gave me back excersises..people saying do excersizes..stretch out blah bla...also seeing a chiro at the time...the more pain I had the more I bent over...getting to the point I thought I could touch the floor with my head if I didn't tip over first. So put the back and the stomach together and I was a site, and non functioning pretty much given the rest that goes w pd.THEN..a new friend w pd said see a motor disorder specialist...a what? Long story longer...at least now I know what I have....and we said it together cause I had traced it down online..Camtocormia..severe stoop or bending of the spine...nothing really helps it...fairly rare..but don't have the tremors much...AND he put me on Amantadine...stomach pain stopped the next day!After months of having cramps and pain and crying an awful lot. Don't know how long it will last but every day without that pain is a better one.Somehow the rest does'nt seem quite so bad...and I'm sorry I wrote a book but maybe it will help someone else who has these symtoms of which I only know of two others in my neck of the woods! I'll sit back and just read from now on...it helps...thanks

  • Thanks for the information - sharing is what this site is all about. Pool our experiences & we're on the way to defining the condition for ourselves & for others - be they experts, fellow travellers (or both) & the rest of the public at large.

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