Toni Shapiro

Hi Shirley,

Thank you so much for your post. It prompted me to research this and  I am going out today to get xylitol.  My dysphagia is very upsetting to me and difficult to live with, particularly as you stated, aspirational pneumonia is the major cause of death for people with PD. I too did not hear that xylitol was helpful for PD patients so I…[Read more]

Hello,

I was under the impression that our posts were private in the sense that it was open only to log in members.  I just googled “mini exercise bikes and PD” as suggested in the forum in response to my post asking if anyone had experience with a mini exercise bike and to my shock my exact post was on the google page with ads for mini bikes…[Read more]

Yes, I have had many opportunities to educated family and friends about PD.  Before my diagnosis I knew next to nothing about it and what I did know, or rather what thought I knew, was a myth (ie everyone who has Parkinsons has tremors.) Since then I have done quite a bit of research and surprisingly find new things about Parkinsons every day.  T…[Read more]

Yes, I had to buy different shoes, tops, pants etc..  I can’t bend over and my hands are bad so I can’t tie shoes and sketchers that are cloth or any other cloth type shoe leaves holes in the toes due to my PD shuffle and my big toes curling upwards so now I wear slip ons and need to get leather.  I bought a 3 foot shoe horn that I love and is v…[Read more]

Thank you David.  I appreciate any and all information I can gather.

Hey Mary Beth, Tina, Ally, Shannon, Matt and Robert.  Thank you so much for your input.  I can’t tell you how much I appreciate it.  It’s good information sharing and great support.  Since my original post I have seen my neuro and my GP as well as had a telephone counseling session, massage and physio (who suggested I turn in my cane for a wal…[Read more]

Hi Garrett,

I just started 2 CR tabs along with 2 100/25 tabs just before bed.  Its the first time in a long time I have been able to sleep past 5 am and wake up energized without bad tremors and being very unbalanced to the point of having to break falls. The idea of using CR in stressful situations is interesting to me.  I suffer from anxiety i…[Read more]

Hi, Thank you for including this information.  I didn’t realize there were guidelines so I really appreciate it.

Hi, I just had an increase in my meds 2 days ago.  I started out with 1/2 Apo- Levocarb 100/25, 3 times a day, increased to 1 tab 3 times a day after 1 week then 1.5, 3 times a day after another week.  This was going to be my dosage and was working well for about 4 months.  I couldn’t believe how it helped with pain.  I went from hurting eve…[Read more]

Thank you for sharing this Tina.  I appreciate your support and that of Lou and others. I think whatever it is/was is starting to lift.  Maybe I just needed to let it all out.  I am feeling much better. Filling out those insurance forms made it all so real, so final.  Anyway, I havn’t craved a coke all day LOL!

Hi, Wow, this resonates with me.  I have been using Rogaine for years now because I was losing my hair like crazy.  It has stopped as long as I keep up the Rogaine.  I havn’t seen anything about hair and PD so I am interested if others have found hair loss to be a problem. I was thinking maybe the Rogaine gave me PD but I realize that I have ha…[Read more]

Hi, this post is timely because my husband and I have been entertaining the thought of a move due to my condition.  I can’t drive anymore but I can slowly get on  a bus or train and it helps to make me feel somewhat independent.  We would like to live in an area where public transportation is more available and less of a problem than it is wh…[Read more]

Hi Lou, I appreciate your response.  I have read about compulsive behavious but usually in reference to gambling, shopping or sex so I never thought about it pertaining to food so this is interesting to me. I am on Apo Levocarb and I don’t think it’s one of the medications that provokes it but I will do some research.

Since my original post I…[Read more]

Ah ha! Now I see where I am suppose to answer you… after first sending my response to you to myself lol.I should know this by now.

I don’t really snack.  I eat snack food for my breakfast lunch and dinner with nothing inbetween. So maybe chips for breakfast or spaghetti if I am nauscous (yeah I know…crazy).  I like things you would never t…[Read more]