Coming out!

I have decided to "come out " with my main other condition besides T-1 D. I have Parkinson’s disease. I have known about it for about 6 years, but haven’t told too many people. The main reason I have kept it quiet is just about the time I was dx’ed with the Parkinson’s, my mother-in-law passed away from it. I didn’t want my parents or my father-in-law to find out, because I didn’t want them to worry about me. This past year, both of my parents and my fil passed away. They never found out about the Parkinson’s. I told only very close friends and my children ( they are adults) and, of course my docs know. Now I am starting to tell people and wanted to include my “on line family” at TuD. I have other conditions too, TMJ, a frozen shoulder, hypothyroid, and I had a hip replacement 4 years ago which included some complications.
I think I have a positive attitude despite the nasty conditions that I have. I wake up each day and hope I can do what I was able to do the day before. Both my husband & I are retired and he has been a great help to me. We do still travel ( just got back from visiting our daughter and her family in CA) and plan to continue as long as I can. If any of you in this group have Parkinson’s, perhaps we can discuss our treatment and/or progress of the disease. If not, that 's OK too. I can still share my feelings with you because you have other conditions you are dealing with. I appreciate your time reading my discussion.

The part I found most difficult to accept about your “coming out” is that you felt the need to keep it a secret at all. And I totally understand why, when you explain it, but there is nothing to be ashamed of and nothing to worry about in terms of ‘acceptance’ - at least not here at tuD! I’m amazed at the wonderful advances being made for the treatment of Parkinson’s nowadays. And with Michael J. Fox “on the team”, there will be lots more good news to come. I truly hope it isn’t a death threat for you… not like it used to be.
Although I haven’t had to deal with Parkinson’s myself, I’ve actually been on several drugs for Parkinsonian symptoms, caused by another condition and by medications, so I can attest to the frustration of my mini-experience just for that short time!
I really don’t have anything intelligent to say here but I wanted you to know that we are here for you, whatever burdens you carry. If there aren’t any other people here with Parkinson’s, it’s probably only a matter of time! There also have to be support websites for people who share your ‘other’ condition too. Now that your veil can be lifted a bit, have you checked around?

I’m sorry to hear that you have to deal with this, its a terrible disease. I hope they come up with some better treatments soon. My Dad had Parkinson’s and died of complications from it, in his 80s.

I too have many other things going on, way too many to list, and its way too depressing to even attempt a list. Suffice it to say that each day has its own challenges. I’m sure the same goes for all of us.

Hang in there!

Thanks, Emmy and bikette- I appreciate your comments and your compassion. I know there is nothing to be ashamed of especially here at TuD. This is a totally non-judgemental and wonderful group of people. I needed to keep it quiet for the reason that I explained in my discussion, now that reason is gone.

Thank you, Cat, for sharing with us. Though I am not dealing with Parkinson’s at any level, your post has prompted me to seek information about this disease…ignorance is NOT bliss!

Linda and debb- Thanks for you comments on my discussion. BTW, debb I love cinnamon too and use it on everything fruity almost daily.

Hi catlover :slight_smile: You have an excellent outlook on your life and I strive to be even close to as positive as you are!

I have restless leg syndrome (RLS) and I found out that the medications we use for this was actually found out to work for RLS by noticing it makes a difference in people with Parkinsons. I guess people with Parkinson’s are known to have higher rates of RLS. When these people were put on Sinemet it was noted their legs got better. Now they have Requip and Mirapex for RLS which do not directly effect dopamine like Sinemet but they are similar types of meds. Interesting what you find when you are motivated to find out about what is happening to your own body!

Anyway I hope things continue to go well for you and you can keep traveling for as long as possible!

Hey Cat....I was re-reading your post, and it got me wondering about how much my children may be keeping from me, all in the name of "not wanting to hurt mom/dad". True...there are things I don't want to know about, but these pertain to crazy/stupid things they did as teens. Good gosh...if I didn't find out about it THEN, I certainly don't want to hear about it NOW!! But in relation to their health...quite a different matter. I understand the rational for your choice; the timing...the age of your parents/f-i-l, but I'm in my 50s and when Timothy, then 23, suffered a collapsed lung 2 years ago...I didn't find out 'till after he came out of the hospital (he was in overnight only!). I was upset about his health yes....but even more profoundly upset about his not having told us. On the converse....we don't tell our children everything about OUR health for the same not frighten them. There though, the reasoning is that I am the parent...and parents are meant to protect their children....funny eh? Tu. family knows way more about my "pluses" than my children...or even my siblings do.

Linda- I agree w/your feeling about your kids. I don't know, or want to know about the "little" health problems they have. But I would want to know about the "big" ones I hope they never get. Especially Jack. I did tell them when I was recently in the hospital ( with cellulitis)not that there was anything they could do for me. I guess being the parent we still want to protect them from all bad things, like we did when they were little. My daughter just turned 40 this year ( can't believe it). Hopefully, she doesn't develop any middle aged problems. Thanks for your thoughts.

There's another grey cloud associated with "coming out".....having more than one condition, as is the case for all of us here!! How much do you tell at work before you start coming across as a burden? Personally...I've only shared when necessary. So the "powers that be" at work know of the diabetes, the migraines and the asthma...but nothing else. As for the rest of the staff, (40 or so staff members) not all know of the diabetes even though it has gone down the grape vine, few know of the migraines, and even fewer still of the asthma.