Living with Parkinson's Disease - Meet others & come say hi

I'm just planning ahead.... in the course of this disease, can I normally expect to eventually be unable to get out of bed without substantial assistance.
These beds are expensive of course

Thank you, Teresa for the welcome note... My symptoms were some tremors in my right hand, and quite poor walking/gait.
I was prescribed Levodopa and have been taking it for a couple of weeks now. My wife noticed that my tremors have mostly disappeared. Walking is still a major issue, and it's worrisome.
I took a CT Scan and am awaiting an EEG.
I've done some substantial research regarding the DATscan, and concluded that its primary use is to confirm a clinical diagnosis. Given that, I still think I'm going to decline.'

I appreciate your follow up post, @wagross. I'm glad that you have seen an improvement in your symptoms with the Carbidopa/Levodopa. That is a good thing. I can understand your reasons for not getting the DATscan at this point. I'm sure it is something that could be done at a later date if you and your doctor felt it was necessary.

Regarding your walking problem. When I was first diagnosed, walking/gait was my main difficulty as well. As this is a new diagnosis for you, it might be very helpful if you were to call your doctor's office and request a referral for physical therapy. There are physical therapists who are specifically trained to help PD patients.

Exercise, along with medication tend to be a good combination for delaying disability from Parkinson's. Until you begin physical therapy for PD, please take a look at the many YouTube videos available at no cost. On YouTube you can search for exercises for PD and find many different exercise programs. While a lot of them are seated/chair exercises, I have found them quite helpful.

Will you continue to post with any questions and to provide updates?

Hi @hopeful33250 , yes I plan to continue to be active in this group. Hopefully for years!! I've been doing a lot of reading and thinking about my situation, and I'm a big plan-ahead person. I've got more questions than my doctor can answer in his limited time, so I've resorted to posing my questions to AI, Microsoft's "Co-Pilot" which I have on both my laptop and phone. I think I spent an hour on it just this morning.
I also see, on occasion, a behavior therapist at my local health clinic. I have an appointment with him tomorrow and I plan to ask him if he treats PD patients.
Finally I joined a local support group- we'll see how effective and helpful they might be, as so far, I haven't heard back.

A local in-person support group would be a great addition to your other treatment options, @wagross. Prior to the pandemic, I was also part of an in-person support group where they had guest speakers from a local medical university hospital as well as social workers, physical therapists, etc.

You might consider looking at the videos and book called, Delay the Disease, produced by a physical therapist in Ohio. Here is a link to his work,
https://www.bing.com/videos/search?q=Delay+the+Disease&qpvt=Delay+the+Disease&FORM=VDRE

So, I went to my behavior therapist to refill my decades long prescription for Abilify for Bipolar Disorder. I mentioned the likelihood that i was going to be officially diagnosed with Parkinson's. He replied that research has shown that long time users of Abilify sometimes also wind up with Parkinson's.
Wow!
Then we got into a discussion of the idea that discontinuing (tapering down) Abilify might alleviate some or all of my Parkinson's symptoms. I couldn't get a clear answer or picture of that from him.
In this whole situation, I must have like an hour's long set of questions for my Neurologist. In my first appointment, I only got 10 minutes- just long enough to prescribe the bunch of tests he wants and the Levodopa. Can't blame him- he had to open on a Saturday just to handle the overflow of patient appointments. Is that just the way it is for Medicare-taking-Neurologists?
My solution so far is to burn up the internet with questions. I'm very happy with the feedback i get from my AI app.
And here too! Thanks!

I was diagnosed with Parkinson's in2019. I take boxing classes and balance classes at the local senior center. They are free, at least for me, for which I am grateful. I have many issues with Parkinson's both motor non-motor. For the past few months my most difficult is balance. I have very little money and find many treatments beyond my means. I am trying to keep moving forward but I am not hopeful. I have no family support and beyond the people in boxing one friend, newly reunited. Non motor issues are also problematic particularly gastrointestinal. That's at least part of my story.

I have mild tremors. Recently bought a pillow top and find moving on it is difficult. I suggest a plain top.

I am a caregiver to my spouse who has Parkinsons. It is the hardest roleI have had in my lifetime. It is so hard to be everything that is needed and sometimes you feel like you are not doing enough. All I can say is " One day at a time". Thank you for letting me share.

I am a 74 year old Male. Just had MRGFUS on Oct,
. 29th. DR. Sani at Rush Chicago was the neurosurgeon. I had a left hand resting tremor, tremor dominant Parkinsons. Long story short I tried every medication in every combination for tremor and nothing worked. After two years the neurologist I was seeing put up his hand and recommended I go to a teaching hospital neuro. Working with Dr. Gill for awhile she referred me to Rush's MRGFUS neurosurgeon, after a tele visit There are a few more steps to see if you qualify. My tremor stopped cold at end of procedure. I have a few expected side effects that should clear up in 3-6 months, such as a little numbness in my lips and tongue and a little gait disturbance when I walk but as an avid exerciser I have already been using my treadmill 30 minutes a day. My side effects are pretty minor I made a short story long but there was a lot to squeeze in. Good Luck