New to PD
Hi, I am a 62-year-old male. I have been experiencing movement issues for years and always considered them to be related to nerve damage I have from lower back surgery. After having lower back surgery again this past year my surgeon recommended, I see a movement specialist. I have been off work since June 2022 with walking issues and a fall risk. I am currently on long-term disability. The movement specialist noticed a slight tremor left side and rigid gait symptoms. She prescribed carbo/leva and it appears to be helping. I feel much better and walking better. I really haven't been diagnosed with PD and feel lost. I don't have a doctor visit scheduled for several months. Since I haven't been diagnosed, I don't know what to tell people and what help I should be pursuing.
I can imagine it is frustrating not to have a clear diagnosis but it frequently takes quite a long time to get a definitive diagnosis. My advice is to keep in close contact with your movement specialist and perhaps keeping a detailed log of symptoms and when they occur can help with an answer. As to what to tell people that is entirely your choice. Some wait until they have an answer and others are comfortable sharing where things stand and share information as they receive it. I wish you all the best in your journey ahead. Please keep in touch and let us know how you are doing. This community cares about you.
Thea DeStephano Community Team MemberThank you!
Hi, I know how you must be feeling. I experienced the same issues. I was never satisfied that I had PD when I was DX. They put me on Sinemet and I never felt a change. I went through months of worrying and read everything I could about PD. When I went back for a follow up, the Dr and I decided I should take DAT scan. It came back NEGATIVE. I have been off the RX for about 3months and in fact, I feel the best I have in years. I still have times when my tremors for 18 years want to really act up. I have been getting chiropractic adjustments and going to physical therapy . I continue to read all I can about PD, join all Zoom meetings I can and have a support group. I am living the PD life, but no meds and no DX. Every PD story is different. I am 83. I wish you the best and be an advocate for YOU.
par2017kinsoNI’m 74 and was diagnosed with PD almost 4 years ago. Other than tremors in my left hand, and not swinging my left arm while walking, I jabs no other symptoms. I play competitive pickleball for 2 hours plus, at least 4 days a week, and sometime 6.
After 3 years of no other symptoms, and no worsening of my tremors, my movement specialist suggested I get a DAT scan a few months ago to confirm his diagnosis as my reflexes were great as was my mobility. Unfortunately, the test came back positive but it hasn’t deterred me in any way. I compete against guys 20 years younger than me and hold my own in the courts. They don’t believe I’m 74 and definitely are shocked when I tell them about PD. Will Just keep taking it one day at a time but the exercise, in my opinion, is what’s keeping it at bay.
