Ms
I am 62years of age and was diagnosed with Progressive Supranuclear Palsy in March 2022. I fear I have what I think of as Galloping Parkinson's as my meds seem to have been increased in number and strength in the short time since my diagnosis. I currently am taking Stalevo x 4 daily & half strength bedtime but it doesn't seem to touch my stiffness or balance issues. I have a long awaited visit from a specialist Parkinson nurse tomorrow but dread her telling me that the next stage is a wheelchair. Does anyone have any advice for me please? I am feeling very down.
Anney. I am sorry you are feeling discouraged and certainly understand why. However, please don,t predict what may not happen. I am in both an electric wheelchair and use a
rollater at home as well as a chair climber to get from floor to floor. As hard as it was to accept at first I have a degree of independence I was missing, It takes adjusting but is worth the effort. Good luck and please let us know how you are doing.We care and if there is anything we can do to be of assistance please let us know. Thea DeStephano
Community Team MemberJust checking in to see how you are doing. Are you currently using a wheelchair or other aides to help with balance or stiffness? Thea hi 5y
Yj
Is DBS an option? I have YOPD and it is impacting my balance and ability to walk big time and DBS allows me to walk around and strutt my stuff without a cane. Who knows it might be time to consider this as an option.
I’m glad you’ve had such success with DBS. Thank you for sharing your experience with us!
-Christina, ParkinsonsDisease.net Team
