Judy

Cynthia and Toni…. finally… someone with the same tongue issue. Mine is just happens once in a while and my neurologist claims it has nothing to do with PD. In fact it was my first symptom. I was in a car dealership getting ready for a test drive, when it appeared strongly out of nowhere. It scared me enough to call my primary. She said get…[Read more]

Hi Mary Beth, I have definitely lost motivation, I’m an early riser and am raring to go in the morning, but after my walk at 6 am, then breakfast and regular household chores, I’m done. I used to be constantly crocheting things for the craft fairs my friend and I do every fall, but now I can’t seem to get motivated. I didn’t even attend last…[Read more]

Hi Laurie, I too was recommended to take C/L right away. I was told I have a very mild case, however, when I was diagnosed almost 6 years ago, I was having trouble doing everything. Once on the C/L I was able to function again though it took a while as my doctor doesn’t want to increase it too fast. Instead she put me on a Nuvo patch and…[Read more]

I’m with you Wobblygirl. I hope we go naturally, though. This whole thing (PD) is so sad. I wonder how I got it.

John, I can identify with you. I have a friend who just can’t accept that I have PD because she doesn’t see everything I go thru when I’m alone. She’ll admit I have something, but she thinks it’s just stress. I’m the least stressful person I know, so I know that’s not true. But I notice when we go shopping, she gets impatient when I can’t get out…[Read more]

Hi Mary Beth. I’m Judy and I’m into my 6th year with PD. I live in Massachusetts where I also grew up. I am retired now but had many different jobs over the years, i.e. hairdresser, admin. asst., telemarketer (I know!) market research, business development at a car dealership, etc. Wonder if any of these jobs were the root of my PD. I welcome any…[Read more]

Hi Barry, I have been looking for someone with the same issues as me. I am into my 6th year with PD and have been sent to every imaginable doctor and sooo many tests with no diagnosis. Three different neurologists have told me this is not a PD related issue. (My problem is achy legs and shortness of breath whenever I try to walk for an extended…[Read more]

Hi Margie, I also have cold and heat intolerance. It seems in the summer if it’s hot out, my limbs don’t want to work. Now that it’s been so cold, I notice the same thing. I try to stay inside on the very hot or very cold days and just do my exercises. Exercise seems to be the key and it’s never too late to start even if you just start with the…[Read more]

I started my exercise regime by going to Physical Therapy. That way, I got a list of exercises for PD and how to do them correctly. I started with my legs and once I finished with that I went back and signed up for my hands and arms. I do them every day – might have a miss here and there – along with my morning walk that I have been doing…[Read more]

Hi Marlyne, I also had dry mouth and tried using Biotene dry mouth wash. It works great! I love it and it’s inexpensive at Walmart.

Hi Blanche, I feel for you…reminds me of growing up with my father, who was exactly like your husband.
It sounds like your husband is depressed…if he won’t talk to a doctor, you should. I’m sure there’s a solution. You don’t have to live like that. Good luck

Hi Fran, I was diagnosed about 6 years ago and also kept it to myself until recently when I remembered something that hurt my mother deeply. She died in 1968 of ALS and also didn’t tell anyone because she was a nurse doing special duty and did not want to quit her job just then. However, other nurses started to notice her stumbling due to her…[Read more]

I was a hairdresser back when we did high styles and used lots of hairspray and lacquer to keep it in. I have often wondered if all that hairspray I was breathing in for years had something to do with my getting PD

Hi Mary Beth, I don’t have hot flashes, I’m just very warm ALL the time. My air conditioner is on 65 and at night in order to sleep comfortably, I put it on 60! I seem to notice the body temperature rises with each new med I take. Not sure there’s a solution to this, but it might be nice in the winter!!!

I just checked back on my emails and found the man who contacted me about the Every Victory Counts manual was from this site. Thank you Jack Waller.

Hi Diana,
I have been reading your posts and really feel for you. I’m going into my fifth year with PD and at first was so very angry and afraid because I have been so healthy all my life and haven’t had to deal with many doctors. Now there are so many. I tried to get into a support group but couldn’t find one. So I started reading this site…[Read more]

John H, I really can relate to your post, but I thought it had something to do with me, like not taking meds on time or not exercising enough. I am a real novice with PD and have learned so much on this site.
When I tell family or friends that I can’t plan ahead because it depends on how my legs are, I think they think I’m making it up, so thank…[Read more]

Jeanne,
Your story is a lot like mine, but different problems. Have had 3 neurologists and like you, I feel were not attentive enough. Luckily I have a son who is super involved. Anything he has recommended has given me relief or answers in some areas. He found me a great PCP in my area and she is proactive. She has contacted my neurologist and…[Read more]