Toni Shapiro

Hi Ally, Thank you for this post. Although it is without saying that I would rather not have PD I have learned a number of things, many positive, about myself that I would not have know otherwise. I am more aware than ever about my privilege and sad that not everyone in the world has access to things that I have that makes living with this…[Read more]

Hi Kim, I really understand what you are saying about wondering if your symptoms are not the norm.  The more I learn about Parkinson’s the more I realize it impacts pretty much everything in your body.  Apparently low back pain and PD together are common. The stiffness of our trunk muscles doesn’t help and my understanding is that Central Pain c…[Read more]

Thanks Mary Beth…Yes, I use humour all the time.  Love, love humour! It makes me smile and even if I am making a joke about myself it lifts me.  I notice that other people become more comfortable when I use it and will make funny observations about me in return.  My husband and I banter and have fun. I enjoy it. Yes,  I am aware my Par…[Read more]

Hi Richard, I am wondering if you recall where you saw the statements about the reduction or elimination of Levodopa and if you feel ok sharing that?  Have you ever forgotten your dose every so often and felt great rather than the usual off feeling like I have? Thanks, all the best. Toni

I have had 2 L/C increases this past year.  It helped the off times I was having about 30 minutes prior to my next dose.  I can usually tell when its close to the time to take L/C.  It mostly starts with my inner Parkinson’s acting up and/or RLS and/or pain in my legs.  That said there are times when I realize that I am well over an hour past due…[Read more]

Yes Sherman, I hear you and I feel it too.  When I was asked what is the thing I miss the most my answer was driving.  I sold may car and gave up my license a few years ago.  That was very, very difficult for me but the best decision I could have made.  I noticed that my judgement was off in that I couldn’t tell just how close or far away ano…[Read more]

Hi Ann,

I am really glad that you mentioned pseudobulbar.  In my post where I list most of my symptoms, at the end I mention crying inappropriately.  I should have mentioned pseudobular by name in the post as that is what I have.  It would have been helpful to anyone not familiar with the term but has the symptom, so thank you for adding th…[Read more]

No, I live in the suburbs and transit isn’t good here however Vancouver, 20 minutes away, has a good transportation system that is expanding as I write this.

Hi Joanna,  I was surprised to read that you don’t find much that is positive on this site. Personally I find  positives in all of the Forums. The Forums are helpful to me in various ways and contain information that does embrace the positive, including the Symptoms Forum and Living With Parkinson’s Forum.  To me a symptom is not a negative in it…[Read more]

Yes, I like goal setting.  I like what Ally said about breaking down goals into manageable smaller milestones.  I find I can overwhelm myself with all that I want to do and become frustrated and anxious which isn’t helpful. Presently I write down what many would call just a daily to do list but is very much like goal setting to me and keeps me f…[Read more]

Hi Ally,  Yes, Thank you.  My post appeared a day or two later.  The bus taking has been fun except when I need to take my walker. I like to people watch too.  It’s like I am a part of society again. Unfortunately I can’t read well anymore which was second to driving in what used to give me the greatest pleasure.  PD has played around with my eyes…[Read more]

Hi,  I would say having to give up my driver’s license.  I drove for 60 years and loved every minute behind the wheel. I drove a stick shift until I couldn’t manage the clutch anymore and although driving an automatic was boring it still gave me a good sense of independence. It was incredibly sad and painful for me to give up driving altogether b…[Read more]

Why is my post on hold?  Thanks! Toni

Hi Judy, Same with me re sciatica.  I was surprised to learn the various PD issues that come from the spine.

Hi Tom, When you say seeing problems do you mean eye problems or hallucinations? I also have the tingling in my feet, bees buzzing in my feet, bubbles in my feet.  It really bothers me too.  For me I think it is the business of the spinal cord and sciatica which is linked to PD.

Hi Dick, I just saw your reply now.  I am so glad you mentioned Akathisia.  I started a thread in 2020 and there were many responses going through to 2021.  Many of the posts are very detailed which I found extremely helpful.  Jo was great with  details.  It is good when a post is descriptive as often there is so much to it you miss somet…[Read more]

Thank you to all who responded to my post.  It is so helpful and I very much appreciate it. Karlyn, I noticed that you included sciatica.  I too have it and just this year I realized that there is a connection. The spinal cord and brain stem seem to play in everything. Jeffery, I was interested in what you said about stress.  I have it big time an…[Read more]

Katherine, thank you so much for your contributions to this forum.  Your posts have been very helpful to me and you have the same kind of questions about PD that I have.  I also believe most doctors are unaware of many other symptoms that are related to PD and that more and more will be attributed to it in time. There is a thread here that asks w…[Read more]

Hi Katherine,

This is Toni.  Thank you for your post.  When you mentioned at least 20 symptoms and that one day you would list them all I found myself wishing you would have done that in your post. I am very interested.  I posted a new topic asking if participants would list all of their symptoms that are PD related.  I think we can learn a lot…[Read more]