You can never go wrong with exercise just check with your dr and take it slow at first.

Billie it is interesting you don’t respond to dopa so they said double it. When I was first diagnosed they told me if i didn’t respond I probably had something else, but like I say they usually look at multiple things over time. Btw I like you was in denial and wanted to know everything which is a natural reaction. What I really found was too much and became overwhelming to me. If I was where you are today I would approach it completely different and help myself as much as possible with things like meditation mindfulness and compassion while your doctors are figuring it all out. A speech therapist can teach you little tricks to help with the swallowing and the balance issues could be as simple as your blood pressure is dropping too rapidly and you need to move slower and more deliberate motion plus you can rule out things with a simple tilt table test. I also typed in atypical Parkinson’s in the search bar together and you will find all kinds of major hospitals work on it just don’t overwhelm yourself trying to figure out everything at once even medication is monitored over time to determine the best treatment for you.

Like I said this my experience not a medical professional.

Sending love and light,

Don

I was diagnosed with PD 2 years ago at the age of 59 but think I had symptoms at least 2 years before but I had a frozen shoulder which was masking the diagnosis as my left arm had tremors which was put down to my shoulder. I also have Ulcerative Colitis which at the time was out of control and being treated with 40mg of Prednisone a day. This is now under control with Inflexenab infusions every 8 weeks. My Neurologist told me Exercise is the best medicine and I totally agree. I have proved this as I go to 3 x 45 minute Strong and Steady classes a week (which helps with balance and strength) and a 2.5km walk on other days. This walk use to take me 50 minutes and now it takes me 25 mins. I am back in my garden and feel the best I have felt in a long time. My advise to you all is Exercise even if you only start with a short walk and increase it every day you will find a big difference in the way you move and it helps so many symptoms. Hope this helps and that you all have a great day. Remember that "You live with Parkinson's - Parkinson's doesn't live with you" 🚶‍♂️🚶‍♀️

Billie, I have the info you need. I did a lot of research for you but I don’t want to share with everyone before I share with you. Do you still have my phone number? If not I can send it again. I won’t be home till tomorrow night but I can talk after 7 or so. You have been in my mind today and in my prayers. One day at a time my friend. Rhonda

BillieHaymore
They should be able to give you a referral to a speech therapist based on the swallowing issues alone. I would even make a call or often bigger neurologist have email or portal you can get answers while you are waiting on appointment to see them. Please consider the tools I offer in my posts to get started now helping yourself.
Sending light and love,
Don