things I've learned in 25 years with PD

Since I am a newcomer to this group let me tell you a little about myself….I was first diagnosed with PD over 25 years ago with early onset at 35 years old and next year will be 60. I have travelled many roads with this disease and would like to share with you some of my observations. My Movement Disorder specialist has been with me for 12 years and knows me well or at least she thinks she does. During the past 5 years I have had several problems always to be net with the response of …”Well, you have had PD for over 20 years so expect some pains and other symptoms to get worse”. My message to you is DO NOT let your doctor write off all your complaints to PD. I had complained for years of sever pain in my lower back, my upper arms hurt constantly and I seemed to be always short of breath but no tests were ever offered. A nurse I knew told me to go to a specialist in physical medicine and rehabilitation who treated neurological diseases. This wonderful doctor sent me for MRI’s and found that the left side of my spine at the l4 and L5 were collapsing on the nerves causing the excruciating pain. I had the surgery on my back and left the hospital the next day with no pain. The arms showed that both rotator cuffs were torn to the point that repair cannot be attempted…reverse shoulder replacements are needed and I am not sure my body can take 2 major surgeries but what would have happened if my MRI had been order 3 years earlier…maybe physical therapy would have been enough. I also found that I had the beginning of COPD…also not PD. I guess the message I would like to leave you with is TAKE CHARGE OF YOUR OWN HEALTH!

Build yourself a team that will work with you with your Primary Care Physician as the foundation. If you go to a doctor who does not want to be part of this team then find another one…remember that your neurologist is not the last word on YOUR health. If you are not happy then get a second or third opinion! This is your life…do not accept that PD is a death sentence. We need to research and ask our on questions. One last word about exercise…which is great for PD…but make sure there is nothing major before you embark on any program. I am positive my rotator cuffs are so bad because my MDS said exercise and I did blindly follow her advice probably to my detriment.

A couple of other things that help me are:

Basis Peak watch….it has 4 sensors on the back and can transmit a several important readings to your smart phone. It even monitors my sleep showing how much deep sleep, light sleep and REM sleep you get…around $200.00

TheraCane…a self massager that gets into those tight muscles and can be used even with limited mobility….around $30.00 and the instructional video $10.00

Two sites full of info that I use are:

michealjfox.org

thebarrow.org (Muhammad Ali Center)

So take charge of your health and make PD only an inconvenience. You may have PD but don’t ever let PD have you.

28 Replies

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  • Thanks for that message - good to hear. I'm some 20 years behind you in terms of PD (but way ahead of you in age!) I'm so grateful for social media, it's where most of my encouragement and good advice has come from. Planning to visit Portland next Autumn for the congress.

  • Hi junebug56;

    I am delighted to hear from you.

    Thank you for sharing your strength and experience!

    Just a quick note to say that you can get an app on your iPhone if you have one.

    It is called Sleep Cycle and cost maybe $2.99.

    I use it every night. It has inspired me to keep a good bedtime routinge so I sleep better.

    Keep telling us of your experiences please?

    And welcome to this site.

    Hugs and love from Eva G.

    :)

  • thanks for the warm welcome...I have many stories and experiences with my PD including a Palidotomy 20 years ago and would be happy to help and share with anyone who cars to listen

  • Thank you for sharing this great advice.

  • Welcome Junebug56,

    Thank you for sharing your experiences! This is appreciated more than you realize. No doctor, no family nor friend can truly understand what a pwp feels like having to deal with this baffling disease. Indeed a challenging journey.

  • Does the TheraCane also work on the calf muscle?

  • yes,,,,it works on all muscles. Look on utube for instructional videos

  • Thank you for your message. Very good advice. I have had pd for over 25 yrs too.

  • I couldn't agree with you more. I have my PCP who orchestrates my case, two neurologists, and a DBS troubleshooting specialist. My mother in law, a retired nurse, always says "One good physical therapist is worth ten doctors" so I have regular physical therapy, too. I once went to a neurologist who couldn't wait to get his hands on me because I am one of 50 on the planet with the Deep Brain Stimulator setup implanted in both the STN and the GPI. My first question to him was "will you collaborate?". His answer was, "No, it's bad medicine". Scratch that one!

    We all must maintain a positive and assertive stance.

    If anyone wants to talk with me let me know through this website and we can set

    up a phone call. I have been through the mill, lawsuits against a former employer who had no idea about what ADA is, etc, etc and would be glad to help you.

  • I would like to hear more about your DBS site locations. Can youlease elaborate?

  • I am interested in your DBS--STN & GPi-- Was this all done at the same time? Why ? Do you have two transmitters? Where did you have it done?

    Has it helped your symptoms? What were your symptoms? How long ago was it done? I have had GPi, not real successful.

  • The same with me..some of my experiences have been unbelievable due to medical stupidity. anyone wanting to ask questions or just talk you can reach me through this web site.

    I mentioned having a pallidotomy years ago and many have never heard of this procedure. It was the pre DBS treatment. a laser is used to kill cells in the brain that cause dyskinesia. It is permanent and cannot be reversed

  • I did not have DBS I had a Pallidotmy which was the procedure used before DBS was available. This surgery cannot be reversed

  • Great Post Junebug56! I suggest going over your medications with your Doctor every 6 months or so. Seems like every time you go to the doctor with a complaint they want to give you more medication. Medications can react with food, vitamins, other medications, alcohol and can make you miserable and crazy. It can also cause death. So make sure your Doctor know everything you put in your body!

  • All my doctors have current lists of everything I take and also carry a copy with me at all times. I am lucky that my PCP has a pharmacist on her staff that monitors my meds on a regular basis. The advice was right on...many people are unaware of how what you put into you body can really effect PD...like too much protein can mess with your CD/LD.

    By the way I loved your poem about can't get out today!! I could definitely relate.

  • A Dr. Darrow at jointrehab.com has had great success I think he might start with injecting dextrose to induce healing and follow-up with harvesting your own stem cells to effect repair of torn and worn cartiledge.

  • thankyou junebug56....I enjoyed reading your post . isn't it funny how each one of us can gain something from each others posts, no matter how big or small or how near or far we are along our journey.We are scattered all over the world yet we are only a click away from each other. Total strangers becoming friends

    amazing...I feel very grateful thanks everyone

  • I submitted a reply to all of you this morning and can't find it now!

    dottie

  • Thank you. I hate when they say well you've had PD x ... I to am 60 and have dx with PD x 20 yrs+. Exercise is of paramount importance! My biggest problem is uncontrollable high BP that can not be controlled w/o drugs that leave me as a couch zombie! ? you don't have PD but COPD? Chronic Obstructive Pulmonary Disease? Were you on Carbidopa/Levadopa? No tremors?

  • Thanks for taking the time to reply and yes I do have PD..diagnosed when I was 35 with Young Onset Parkinson's. I was living in Zurich, Switzerland at the time so I had to go through the whole process of diagnosis and treatment in German which was a second language for me. I was in the middle of a horrible divorce from my Swiss husband whose binge drinking had turned into severe alcoholism over a 10 year period. I went to the doctor with a tremor in my right arm thinking it was just nerves from the stress I was under but he told me very quickly that it was more than stress but I will always believe that the constant pressure had some part to play.

    I have the opposite problem as you...my BP is usually around 90/60 which can also leave you wiped out,

    The COPD is new for me in the past couple of years but my neurologist wrote it off as part of PD even though my father had suffered with breathing problems for 20 years before he passed.

    I do realize the importance of exercise but with both my rotator cuffs torn beyond repair (shoulder replacements required) and my lower back surgery less than a year ago I need to be very careful how I move but I do what I can.

    I have taken CD/LD over 20 years now and also take Requip. I have been on Rytary for about a week and had some undesirable side effects but will stay with it for a while. Also my Apokyn injections are always with me.

    I hope I cleared up some things for you.

    I will end with this quote from Janet Reno

    "My hands may tremble but my heart does not."

  • Thanks , II hope you can get to a better place with your back and shoulders!

  • Hi Junebug. I fully concur with your thoughts on taking full control of your health. I have come across the same attitude among neurologists. But remember , they are only human and they, like us, make mistakes! If your neurologist is negligent or TOO BUSY then change to another one!

    It is very difficult to diagnose and treat Pd. There is no fixed condition with Pd. We are all different. I think of this problem differently to most other people, including neurologists. We know that Pd is caused by certain dopamine producing cells in the substantia nigra being damaged by a substance called alpha-synuclein. We have millions of these cells in our brain and my understanding is that each cell has a specific purpose and if the damaged cells in my brain are not in the same place as the damaged cells in anybody else's brain, that would account for my Pd being different to anybody else's. I feel quite sure this is the case, but nobody else has verbalized it yet!

    My story is very interesting, or at least it should be, because my symptoms have got a lot better, since diagnosis. I have not needed to take any Pd medication for the past 12 years. I also have no movement problems, unless I become stressed or I stop doing my fast walking.

    If you would like to read more about it, because it is a long story, then go to my website - reverseparkinsons.net - and read all about it.

    Good luck!

    John

  • John,

    I got my book today!😊. I'm delving right in. Thanks

    Jane

  • Hi Jane. I'm so relieved! I am going mad with books not arriving on time. Our post office is in such a state here, they have had their bank accounts frozen, because they owe so much money. Their staff had a four month strike late last year and that mail has still not been delivered. But you got your book and I need not worry any more about that one, but two others have still not arrived and I am trying to locate them. I hope the book helps you.

    Kind regards

    John

  • Thank you, John and try not to worry😀

  • Thank you for your information. I have found that you have to make appointments with doctors yourself in order to see what's causing everything. I've had the shortness of breath and been to many doctors and no one can figure that . But I suppose it's anxiety. I will be looking up your sites from Michael J Fox foundation.

  • Hi Junebug Fantastic post love your positive views on PD I felt very uplifted thanks for all the info and web sites more practical advice like this needed cheers Sunnysky

  • Thanks for the information.

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