Toni Shapiro

Allie J, Hi,

I can’t thank you enough for your post. It helped me so much to read what you had to say. It was awful thinking I might be the only one who goes through this and I would doubt myself over and over. I want to copy some of your wording because it so much reflects my experiences.

I messaged my sister, and in detail described what her…[Read more]

Hi Ally, Yes I do like to plan for the future, particularly now that I have Parkinson’s we need to adjust our retirement budget to reflect that. It’s been interesting how small purchases like shower seat with handles, toilet seat bidets, bed rails, canes, altered clothes so you can dress, shoes you can get on with help of 3 foot shoe horn,…[Read more]

Hi Mary Beth, Hope your Dad is doing well.
I chose to take medication right after my formal diagnosis. It was obvious that I had had Parkinson’s long before. My neurologist also thought it was in my best interest to start right away and I am glad I did. I had almost immediate relief. Although my medication has changed a few times last year I…[Read more]

Terrible sleeper for years. CPAP machine has helped greatly. Without it my husband says I jump around in bed sit upright and howl just like a dog. In the morning sheets and covers are all twisted and mostly off the bed. I flail my arms and legs and yell things. Pretty scary for him. It doesnt happen when I am on my CPAP.

Hi Ally,
You probably won’t believe this but I’ve never logged on to a podcast before. I have u tubed but not heard a computer podcast. I wasn’t sure how to get on. I thought I would try since you mentioned it. I listened to some of When Life Gives You Parkinson’s and I think I am hooked. Thank you. It’s good to hear what other’s go through so as…[Read more]

Hi,
I had posted something about me and exercise awhile back and I didn’t find all of the responses very helpful even though I appreciated that people took the time to respond. After reading Jean, Carolyn,John, Robert and Mary Beths posts I don’t feel so alone with my pain and fatigue and nausea during and after exercise. I am happy that some…[Read more]

Hi,
Thank you for this information Argya. I too am interested in the psychological aspects of PD. Also I will look up the blogs suggested by George. I get quite a bit of my information via the library and The Michael J. Fox Foundation. The MJFF often has Utube videos, Davis Phinny in particular, that my family finds helpful in attempting to…[Read more]

Hi,
Thank you for this topic. I also have a big problem with constipation. I always drink extra water, eat lots of fiber, take magnesium 150 high absorption 2 times a day, senokot stool softner, restoraLax (suggested by my neuro) and glycerine suppositories when necessary. However, I can and I do have bowel movements with this regime. The issue I…[Read more]

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.