Toni Shapiro

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]

Hi Jo,

I sent you a private message.

Hi Rob,

I havn’t had my toxin levels tested but I want to have it done and will look around for the best way to get it done in my area. Thanks for mentioning it. It reminded me that it is something I wanted to have done.

Yes I do have REM sleep Disorder. I am on CPAP which has helped me.  I also have gut problems so I am interested in the…[Read more]

Hi Mary Beth,

Thanks for this post as it has brought up things for me that I haven’t thought of for a long time.  I’d like to add to my above post concerning my excessive physical training because I am thinking that the combination of my early exposure to pollutants and the over the top training are most likely the reason I have PD today.…[Read more]

Boy I wish I knew the answer as to where this came from in my case. There doesn’t appear to be a genetic predisposition.

I spent the first 24 years of my life in an area that has been noted to have a high percentage of persons with PD.  At the time I lived there it was very industrial but since that time the steel mills have closed. I am…[Read more]

Yes, the forum has been very helpful. I have learned so much from others.  I greatly appreciate that I have a place to bring up things I may not tell my friends.  There have been so many ah ha! moments for me when I read that I share an issue with other posters. I don’t feel alone.  So thank you to all who makes this possible.

Hi everyone,  I also have many of the same issues with freezing as in all of your posts except for freezing when I come in contact with a dog.  So many strange things with this disease. Like Caroline I know anxiety plays a big role for me so because I worry about my speech and losing balance  so I freeze when I see someone I know.  Dogs ok.…[Read more]

Hi,

Thank you to everyone who responded to my Akathisia post. Except for the jumping jacks (way to go Jo) and the stairs, (only because I can no longer manage those kinds of movements anymore), I totally relate to Jo’s posting.  She described the symptoms perfectly and in great detail which I very much appreciate.  I agree, I want to jump out o…[Read more]

Hi David,

Thank you for your very thoughtful reply.  I am aware of the connection between voice and swallowing which is why I mentioned my swallowing issues on your voice post.  My PD counselor tells me my voice is strong for having PD so I find it strange that I  have difficulty swallowing yet have a strong voice. She thinks it may be because of…[Read more]