Toni Shapiro

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]

Hi David,

I am at the stage where I have to use a walker and other aids to assist me.  Even though I am probably past midway with PD I think I still have a strong voice.  I choke on my food and pills a lot of the time but my voice remains  good although sometimes when off or talking on the phone too long I get hoarse. I do nothing purposefully to…[Read more]

Hi Jo,  I am so sorry about the lack of empathy you have received. It made me sad and angry that all that happened to you.  I don’t know what it is about PD but it seems to trigger those kind of supportless, (is that even  a word), responses. I am very happy you have your husband.  I am also sorry about your first experience with the doctor. Wha…[Read more]

I told my husband first because he was in the waiting room when I had an appointment with my neurologist. When I came out of the Doctor’s office my husband asked what happened and all I said was, “I have it.” Apparently I didn’t ask the doctor any questions so I couldn’t answer any of my husbands questions to me. Going into the appointment I was…[Read more]

Hi,

Right now I am incredibly frustrated as I started this twice so far, writing quite a lot, only to have my catcher mit hands do something, I have no idea what, cause all my work to delete itself!!! Twice!! It takes so much time to try and redo things!! UGG!!  This is not even my bizarre symptom lol

Like Jo S it’s hard to pick just one…[Read more]

Hi Garrett,  The pandemic has been a relief for me too. I also find zooming friends and family an effort.  Once on a group family zoom I fell trying to move my computer and ended up with a very colourful shiner!  My anxiety levels can get over the top particularly because I know what I want to contribute to a conversation but can’t get the th…[Read more]

Hi Amy, Barbara and Sharon,

Thanks so much for replying. Being cooped up with COVID apparently makes my humming particularly annoying to people. No escape! Maybe I should check out the caregivers forum to see if anyone has written about it there.

I was talking to my PD counselor about it and she mentioned that my voice is strong for someone with…[Read more]