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:
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.