Tina

I’ll try typing this again. I’ve had Raynaud’s disease longer than I’ve had PD symptoms, over 30 years. I was tested for cold sensitivity and it came up positive. I didn’t need a test to tell me my fingers, nose and ears turned blue in the cold. The pain is so extreme every day no matter what the temperature—I’ve always lived in the south. I’ve b…[Read more]

Same thing happened to me. Too much typing!

I use a weighted blanket, satin type sheets, polyester/satin slippery night clothes to help me turn and get out of bed, memory foam mattress and a large pillow between my legs at night to help with back pain, negative recessed sandals (like Birkenstock’s but much cheaper) to keep me from slipping, cotton type socks to help from slipping and i…[Read more]

Whenever I don’t use my cpap I have dreams and I’m exhausted the next day. I have dreams and wake up 4am if I don’t take my Ropinerole on schedule or eat something with sugar after 9pm at night—shame on me! I also have them if I get an infection, because usually I have to get up at night so my sleep will get disrupted. I figure it’s my REM getti…[Read more]

I injured my back several times throughout my life and have damaged disks all along my spine. I tried everything to deal with the pain and it was alleviated periodically. In the last few years I’ve been sleeping on an air bed with eggshell cushioning and it was wonderful. I just switched to a memory foam mattress and it seems to be working well. I…[Read more]

Jo S. I feel for you. When I started this “journey” I felt very much alone. I had to adjust and try to open up to others to get some emotional and practical help, despite my hesitation to do so.

I’ve always been perceived as extremely independent, one who helped others and refused help from others. But I quickly discovered this is a condi…[Read more]

Mary Beth I moved in with my daughter who bought a house with a downstairs “apartment” for me. It’s beautiful and about the same space as my former apartment. There’s a large yard with lots of flowering trees and  birds and it’s very peaceful

The only problem so far is that it’s on a little “hill” that I can’t descend or ascend so I really can’t…[Read more]

Thanks Mary. I do use my ipad and phone to record thoughts as I have a hard time remembering ideas. It’s frustrating always having to correct the app’s typing but it’s still rewarding to feel I’m accomplishing something.

I think after I get settled in after my move I’ll get serious about it. I figure if I can just work on the table of contents f…[Read more]

yes Steve and it’s bad enough at home let alone being out in public when it happens

I found I had to give up caramel and fudge, as they were  becoming too difficult to process in my mouth. Both have always been part of my existence, and our family has its own versions we make. So I thought it ironic I’d have to give up this lifelong habit.

I also found that I couldn’t tolerate the taste anymore, I got nauseous as soon as they…[Read more]

Mary Beth thank you. It’s funny to think about accomplishing something like that when I’m in the middle of moving. Maybe one day I won’t feel consumed like I do now, and I’ll take a shot at it. Never hurts to try to expand one’s life experiences and revisit that bucket list from time to time.

Paul, thanks. I spent decades in the “words” field using various skills in different jobs. I always thought I might write when I retired but I find it so frustrating trying to think and type now. I guess that’s why when I come here and open up my mind it all spills out.

No one on the outside of this condition really gets it and I don’t have th…[Read more]

Mary Beth It started about 3 years ago. I’ve figured out that I first started having PD symptoms about 22 years ago. I was diagnosed in 2019 after they really got bad and I started  meds which have helped immensely.

I had horrible migraines and sinus headaches my whole life. I blacked out and fell ever since I was a kid but the drs said my he…[Read more]

I was wondering if anyone has had the feeling of being shaken like a rag doll. I could put up with the tremors and headaches until I felt like I was being grabbed by the neck and shaken, while the base of my head felt like I was being kicked.

Since I’ve been on a dopamine agonist it’s been under control unless I get overly stressed, upset or fat…[Read more]

My neuro told me to make a conscious effort to try to focus on a thought instead of trying to get everything done on my list. I was always proud of how I got everything done. Now at the end of the day I still look at what I accomplished, but I know if it’s more than three things I was too hard on myself and I’ll have a hard time sleeping. So I’m…[Read more]

Joe and Robert I appreciate you describing your emotions. I was known for controlling my emotions and keeping my head in professional situations when others were losing theirs. The last two years I’ve been staying home because I laugh or cry at the simplest things, sometimes uncontrollably. Going out to the movies is especially bad.

My first s…[Read more]

No I don’t feel I’ve been stigmatized. It’s made everything easier for me. I always tell people I have it because it puts the label on what they observe. It makes them instantly understand and enables them to go on dealing with me without wondering. I’ve accepted it myself of course. Otherwise I doubt I’d be able to do so. I also go out less ofte…[Read more]

I have the same issues and have withdrawn a lot. My friends were concerned at first but now they accept that if I’m up to it I’ll go out or accept visits. They’re considerate and text or call before dropping by to see if I’m up to it.

Of course I’m not happy with these circumstances as I’ve been an outgoing person for the most part of my life. I…[Read more]

All these comments are familiar to me. All. So I think in my case it’s probably family genetics of tremors, environment and personal body makeup and experiences. Which adds up to anything or everything, time and unforeseen occurrences.

I always tell people each day is a gift and no amount of healthy food, practices and sleep is going to erase t…[Read more]

Jean and Mary Beth,

Thanks for your encouragement. That’s exactly why I come here, and to listen and encourage others. I can’t imagine what life would be without the internet in trying to understand and deal with this condition.

Unfortunately at the MG site I get the feeling of having to try to constantly push oneself and start fun…[Read more]