Toni Shapiro

Hi Mary Beth,

I like to do research.  It helps to make me feel like I am doing something to help myself.  Knowledge is power and I often feel powerless.  Just when I think I know almost everything about Parkinson’s 😂I learn something else.  It is particularly helpful when researching symptoms that are not well reported or when I come across som…[Read more]

Hi Cynthia,

I also clench my jaw very tightly, to the point of giving myself a head ache but what I am really interested in is what you said about your tongue.  I have that too.  My tongue seems to fill my entire mouth and the sides of my tongue are often sore, some times bloody,  due to my teeth biting it. My tongue is always in the way.  If fee…[Read more]

My startle reflex is off the charts.  I can not control it and it causes me much embarassment.  I have had if for a long time, especially so since my PD diagnosis and it is getting much worse. It doesn’t matter if I am having a series of good days or bad days and  I have no issues with my meds. I make startle like noises with varying degrees of lo…[Read more]

Hello, Yes my speech has changed, particularly when I am anxious and or due for my meds.  I do experience some social anxiety and  I am dealing with that but I stutter, slur, can’t find words to complete my thoughts, can’t articulate and usually just give up trying to finish a conversation and just stop talking.  At other times I can carry on a co…[Read more]

Thank you Ally and Lori.  I appreciate the information and you taking the time to reply.  I am aware of some of what you have recommended and I will be watching a new one from Parkinsons Society BC, CA on Feb 17. I believe it is open to everyone.

Rather than see another webinar or read another article I was hoping some people would share their p…[Read more]

Yes, I have experienced bumping into things as well as finding bruises that were obviously from me hitting something but I did not recall how it happened..  I don’t think it’s weird though.  One of the reasons I stopped driving was that my depth judgement was/is off.  I misjudge door openings and my balance was off which were pre my formal PD di…[Read more]

It has been over a year since my July 2020 post and I am still humming.  Like Amy I hum ring tones and just about anything I hear but whatever I am humming it is constant. Like others on this post it seems like I do it when I am content in the kitchen focusing on cooking or baking.  However it seems to be comforting and makes my throat feel b…[Read more]

I look for and I need humor in my life.  Calling myself “Parkie” lifts my spirits and oddly  makes me feel more normal……until it doesn’t and I choke when I say it..  I embrace it and I hate it if that is even possible.

I dream every time I am asleep for longer than a few minutes. My dreams are very clear and I can recall in detail maybe 60% of the time, although lately I am having more difficulty. I have multi dreams each sleep so varied topics in one snooze. I can dream about anything but most have something to do with my PD. Occasionally I thrash in my…[Read more]

Hi Gary,
This is my fourth attempt to answer your post. I hope it goes through. I was very interested in what you had to say about flying and how after flights your Akathisia would be much worse. I know that you read my previous posts describing how horrific my symptoms were and much like yous. I have had almost a year of being Akathisia free…[Read more]

Hi, Yes please. Today I have written lengthy replies to Gary regarding his Akathisia post. The first one was never posted and the second one I know I clicked reply and submit and actually saw it but it said ERROR (reply to reply or something like that. All I know is that neither have appeared. Can you please check what happened for me? It’s…[Read more]

Hi Gary, Oh No…I just wrote piles of text in answer to your post. I am very appreciative of it and had lots to say. It looks like it didn’t go through on the thread and I can’t find it anywhere else YIKES!!! I will have to do it over but can’t do it righ now as it takes me a long while. Thank you for the post and I think you may find my…[Read more]

I very much appreciate everyone who posted on this thread.  Thank you.  Your posts nudged me to think about my anxiety and some depression that has increased this past year.  I find the anxiety most difficult to deal with as I have little control over it where as with any depression that pops up I can exercise it away. I know other people can’t do…[Read more]

I would say it’s very important to understand that everyone with Parkinson’s is different and to always keep that in mind.  What may help one may not help the other.  There are so many parts/ symptoms related to P.D. that are not widely  known so keeping tract of everything you experience is a good way to start and share it all with your do…[Read more]

Hi Jean,

I really get it.  It bothered me as well to increase my medication but I would have done anything to make it go away. My Akthisia was unbearable.  I was grateful there was something to relieve it.  Thanks to Jo’s posts and her support I was able to see my way though it.

I also remember how supportive you were to me and others when yo…[Read more]

Hi Jean, It has been awhile since I have seen a post from you.  I always liked what you had to say.  I am very sorry you think you have Akathisia.  It’s a terrible feeling.  I have been mostly free from that suffering since my neurologist added two more 100/25 Levocarbs at 9pm and two 100/25 Levocarbs CR at 10:30 pm.  My Akathisia would happ…[Read more]

Hi Dave,

Yes, it’s a terrible symptom to live with. Click on Parkinsons Disease Symptoms under FORUMS on this site. Scroll down,  there are 11 descriptive posts from 4 weeks ago on this topic. I think it will be of interest to you.

I would have nights where I would move my whole body for hours at night.  I thought I was going out of my mind. M…[Read more]