Comorbidities
Just wondering if anybody else has another diagnosis that exacerbates your Parkinson's, and how you deal with it. About a year ago, what I thought was worsening PD symptoms actually turned out to be Bilateral Vestibular Hypofunction. From what I've read, BVH is even more rare than YOPD, about 28 out of 100k. Like PD, it is often idiopathic; that is the case of both diseases for me. Other shared traits: incurable, disabling, symptom variation, tempered by excercise, falling/balance issues.
Balance issues, falling.
I am sorry to hear about your PD symptoms, CommunityMember952. Both balance issues and falling issues are common in PwP. You might have done so already, but have you made an appointment with a movement disorder neurologist or physical therapist for an evaluation and treatment? Best, Marc, Team Member
I also have a rare orphan movement disorder Orthostatic Tremor Syndrome which involves tremors only when standing and also affects gait with occasional freezing. At present I take no PD meds although I have been taking Clonozepam for that. Generally my PD symptoms are mild and I can deal with them although inconvenient. I am generally trying to handle the PD with exercise and an anti oxident Mediterranean diet. I also use a rollater , electric wheelchair and chairlifts as I am a high fall risk and balance is sometimes a
challenge. If I can be of any further assistance please let me know. All the best
Thea DeStephano Community Team Member
I have CKD and Severe Peripheral Neuropathy in addition to Parkinson’s. Both have symptoms affecting my balance, fall risk, orthostatic hypotension, and blood pressure. Parkinson’s also presents with the same symptoms. I use my doctors as a coordinated team and they agree as to treatment and meds.
Phil
Phil, I am interested in this subject as I have other issues piling on top of the Parkinson's. Could you share how you "use my doctors as a coordinated team and they agree as to treatment and meds?" I find it difficult to even get them on the phone with each another. Meds are another issue. Each specialist is prescribing for his specialty and this sometimes leads to bigger issues.
How do you do it?
Phil, My husband has had Parkinson's for 7 years following a PV Shunt surgery for Normal Pressure Hydrocephalus in 2013. He was great for 2 years and then the Parkinson's was diagnosed. We were both devastated. He was a practicing ophthalmologist, and I had worked along side him for 45 years and he and was advised to retire which meant I retired as well. Our lives were upended. We as well have difficulty evening getting our doctors on the phone to answer simple questions. Our internist, who is wonderful, can't even get our Neurologist at the University of Florida on the phone to discuss problems. It's very sad. If anyone has anything that they are doing or medication that they are taking that helps with fatigue please share!
