Reactions when you tell people you have Parkinson's Disease?

@kar907 Yes. I went from 155# to 106# in a matter of months. Scary! All the doctors and all the tests said I was healthy. I forced myself to eat as much as often as I could to no avail. Finally found the right dr. and neuro and am now back to my preferred weight of 127#.

@goatgirl28 Well that is not a problem I have had and sounds drastic.
What was the problem and what changed to stop the weight loss?

@gregmt
thanks for the stretching advice---I do need to do that more often. on another thread I mentioned fascia blasting for stiffness. My wife has been doing it for years and she fascia blasted my hand, shoulders and legs (different times) and it was great relief. of course, it is not permanent, and it does hurt sometimes but the relief is real for me. I bought her a motorized blaster for Christmas (had to save up for this) and that thing works very well. It also helps that my wife does the "blasting". Check it out

@kathy49 The only 'answer' I received was tremors burn more calories than I could ingest. I started on the carvi/lepo.

@kar907
I have lost a bit of weight but find I am not really interested in food. Nothing tastes good.

@goatgirl28
Interesting and others should comment as I am quite new here. I would think that tremors would have to be major to burn calories. And if that was the case then c/l is the first and gold standard med you would get. But for you sounds like not the first med. This one really confuses me. I had a tremor in right hand that started to be noticeable and that is what brought me to the neuro (movement specialist ). As we all know each case so very different.

Hello @kar907 and welcome to Mayo Clinic Connect. I understand how difficult it is to face a diagnosis of PD. While you are right that there is no cure, there are many ways to manage the symptoms. Have you been prescribed medication? If so, is it helping? There are many different medications now that can be used if one medication is not dealing with your symptoms effectively.

What about physical therapy and an exercise program? There is PT specifically designed for patients with Parkinson's. If you have not yet received a referral for PT, I would suggest requesting one.

Here is an article from the Parkinson's Foundation website that discusses exercise and PD:
https://www.parkinson.org/living-with-parkinsons/treatment/exercise. Are you currently exercising on a regular basis? If not, this will help you both physically and emotionally.

I look forward to hearing from you again. Will you continue to post your concerns and questions?

I just wanted to add that when you have PD, every malady you get feels like it is due to PD. In my experience, most of them are not. They are viruses or something separate (e.g. drug side effects, stress) that PD is making feel worse. One doctor advised me to take one at a time, and hopefully you feel better within two weeks. Sometimes it takes your body many days to get over some event or period of high activity or stress, at least that is the effect PD has on me.

No doubt, when you are in the middle of a bad period, it can be really debilitating.

@bmfoster You'are fortunate that your friends respond that way -- offer to helpp you . You don't have to be dying to have less energy to do some of the things you've always done before so it's sweet when somebody offers sto water your flowers, knowing that you must take pleasure in having the flowers and that this couldl be welcomed help. I haven't had anyone treate me any differently that they did before they knew about my diagnosis. I've been very pe about it because actually it was a fantasticly GOOD thing that I finally got a diagnosisi afeter chasing it so fiercely for such a long time. becuase then I could get TREATMENT! By the time I got my diagnosis, I had been bedridden and coudl do virtually nothing, not even go to the toilet by myself. I was in TOTAL OFFLAND, every frickin,hour of every fridken day of every frickin week and was joyful when I got my diagnodid because 1 hour after I had my first l-dopa pill I could get out of bed on my own, walk to the bathroom alone, becuse I had been certain that I was dying and didn't know how much more of this what I now know as the dreaded OFFLAND I could take. And I was sooooo relieved to know what I had, and that there was a treatement, and that it worked for me. THe thing I feel sad about is all the time I missed with my grandkids My husband and I used to take turns picking them up after school and I missed a few years ofr that time and now my oldesst is in the Army, the middle one is starting college, and the youngest is 14l That and the worry that haunted my poor huvband as he picked up all the things I used to do whlie worrying about me and seeimg how misserable I was. But those things are over and I'm feeling decent and can do things like go to the pharmacy to obtain magic potions that enable me to continue to delude myself that I'm younger than I am. This PD stuff is part of me now and while I wouldn't have sought it out by choice, it is soooo much better than where I was, I really can't complain. I'll bw 82 in a few months and if I were to die tomorrow, I wouldn't have been cheated our of much. I'm not eager to die,(although I'm growing rather weary of all my friends dying on me. I just think it's rude that they jusst up and die on me when I'm begeinnign to get better and more able to play and they die. I find it meaningful to do do things like sharing the Hospital Guide, knowing it may help someone have an easier time if they have to be i a hospital, or sharing my Nrurologist's advice to let Kiwi friui be the answer to consstipation. and putting my silly nonsense on Facebook., creating a very exclusive club consisting of myself, my granddaughter, and her mother and her other grandma, we are known as the Wild West Women of Berlin, and as our name suggests, we go wilding through our lovely city of Berlin . This involves hitting out favorite ice cream shop and induging in our favorite treats and returning home to long naps. We are just that WILD. People see the 4 of us and run for cover. They shouldlln't fearus (although if they were to try to se parate us from our ice cream, we might have to get brutal with them.

@jatonlouise
Great post. Sounds like you have a great exclusive club keep that going. Love the ice cream part. And I did make a
Mental note about the benefits of kiwi. Thanks