HOW DO YOU DEAL WITH TOO MANY FRIENDS ASKING YOU QUESTIONS ABOUT PARKINSON?DO YOU AVOID THEM?

[GBAMIGOD]

I was diagnosed with PD 2 years ago,and I am beginning to feel like avoiding some social events and only attend the most important ones.I noticed that during my off periods,I start to worry about what to tell friends outdoor if they ever noticed my symptoms,before the next dose of sinemet kicks in.I will like to share your experiences and thankng you in advance for your support.

[wifeofparky]

after my husband was diagnosed, he didn't want anyone to know. He would get angry if I discussed it with anyone. Finally I asked him if he'd rather have people think he was drunk or on drugs. It is better to speak up and let people know. Your true friends will be supportive and reach out to you.

His friends were very supportive and understanding. Instead of thinking the worst about him, they empathized and were more patient with him, allowing him to continue to socialize as he was able.

I hope this helps.

[GBAMIGOD in reply to wifeofparky]

Hi,thank you very much for your response.Very well appreciated.

[Icequeen10 in reply to GBAMIGOD]

I worried about that in he beginning. Decided to tell everyone. Works well for me .

[GBAMIGOD in reply to Icequeen10]

Hi Icequeen 10, I used to be very social in the past before my diagnosis,this made me keep so many friends,but not all of them know of my condition yet.Well,I guess I'm going to let them know if they notice,at least to get some relief.Thanks for your insight.

[Lionore]

I'm finally retired at age 72, four years since PD was diagnosed, which really helps.

The worst PD symptom for me is fatigue. I tend to avoid evening commitments. With proper medication (Sinemet and Rasagiline) and a healthy lifestyle most of the time (exercise and a plan of eating emphasizing organic, non processed foods, supplements including B1hcl) I'm good to go in the mornings and mostly OK in the afternoons. If there is something special going on in the evening that I would hate to miss, like seeing out of town family, I try to rest up and keep a very relaxed schedule during that day and even the day before. When visiting family I have been known to get into bed about a nano second after my young grandchildren!

If anyone remembers the t shirt that shows a wiped out duck saying "I don't do mornings" think of me in reverse: I don't do evenings!

If your friends are true friends, they will understand. Everyone has their little quirks, like not liking a particular type of food or avoiding going certain places. I try to avoid mentioning PD by name; I might refer to a neurological condition. It is true that our lifestyles may have to change, but it can mean modifying activities and schedules instead of giving up socializing altogether.

[GBAMIGOD in reply to Lionore]

Thanks Lionore.Well thought and well said.Will not let PD define me.After all,everybody has one problem or the other,visible or invisible.Thanks again.

[ddmagee1]

Because I'm older, I sometimes just say that I have one of those old people's ailment's, that people sometimes get, just a bit slower and crotchety. That 's if somebody notices and says something. A couple times, shortly after being diagnosed, when I told a few people, I didn't care much for their reactions, when I said the word Parkinson's. One said, "Oh, terrible! A friend of a friend of mine recently died of that." Another person said "Oh, we know of somebody in the nursing home, with that." So, some people sort of stay their distance and don't want to talk to you much after hearing about PD. For me, it's best that I don't make a big deal of it, and try to act as much as I can to walk and talk like a normal person, which requires a lot of effort, sometimes. I make myself smile, even though I have sort of a numbness, and masklike face. I make my arms swing and deliberately take as smooth steps as I can, to appear more normal. Sinemet has really helped to disguise/ relieve the tremor and stiffness that I had. They were dead giveaways! I wish I didn't have to try to disguise PD symptoms, but, unfortunately, I have found that many people don't understand, don't care, and that one can lose friends just because they have PD, through no fault of their own. Of course, there are some who understand, but many don't. I think what bothers me the most though, is when I turn to a physician, for understanding, when a new neurological symptom comes up, for support and explanation, and find out, sometimes, that they make me feel like my complaint is minor and nothing to be concerned about, and show no support. What's worse, is when the symptom develops into a big problem later, where something needs to be done, to help me. So, this has happened several times. Having PD is fickle, in a way, because symptoms can get better or worse, at different times, so maybe it's just hard to treat and understand. Telling people I have a neurological condition, also, is, probably, a good approach, as long as they don't associate neurological condition, with psychological condition. I've had that happen before. Apathy makes me want to give up socialization completely, but it is not the best thing for one to isolate oneself, completely, when they have PD. It's great to have a forum like this, where Parkies can communicate with each other, because we really do understand what it means to live with, and deal with, the ups and downs of having Parkinson's.

[Lionore in reply to ddmagee1]

Crochety, I love it! My other half is a proud self described curmudgeon. Now we are a proper pair!

[wheres-dot]

When my husband was confirmed with Parkinson's we prepared a list of family and close friends to contact, and a script to say to them. I rang them as my husband's voice was very weak.

I said I had something I wanted to tell them about and asked if they would listen to the end of my message as it was difficult for me.

Here is what I said to them:

- While he now has a diagnosis of Parkinson’s, he is still the same person – Parkinson’s is simply a part of our life we are adjusting to living with.

- If he had the flu then asking how he is and do you want to talk about it is fine

but for eg diabetes isn’t a topic of conversation with our niece who has diabetes, we talk about what she’s doing in her life etc ...

- same with Parkinson’s. We would really like you to help us by not asking him how he’s feeling or pushing him to talk about it. That way we can continuing to enjoy catching up with you. If we need any special help at any time we know we can then ask you.

- I'll email you a link to info about Parkinson's and the Info line number for our very excellent Parkinson's NSW nurses who are very happy to talk to friends,

Everyone was wonderful and have been careful to only discuss Parkinson's with my husband if he starts the topic.

Hope this helps you a little.

Cheers Dot

[ddmagee1 in reply to wheres-dot]

I like that approach! Thanks for sharing.

[GBAMIGOD in reply to wheres-dot]

Well composed. Thanks Dot.

[Franklinbill]

Parky and I have an under standing , you were not invited so get lost. It does little to try and hide. Exercise, eat right and pray. DO NOT IGNORE HUMORE( PARKY) SPELLS FUNNY. I takes forever to type with tremors. I am not too bad until Parky intterjects stupidity. Remember THE UNITED NEGRO COLLEGE FUND closing motto, THE MIND IS A TERRIBLE THING🤣

[MBAnderson in reply to Franklinbill]

consider voice recognition software. Dragon, by Nuance $80.

[Jennyjenny2]

My husband begrudgingly joined a local support group, and it has been the best thing for him...they don’t ask questions, just give support, and we have made some wonderful friends. We still have contact with some of our old friends, but PD has a way of sorting your true friends out! Unfortunately most of the stupid questions now come from my husband’s family, and they of course are unavoidable. We have always been upfront and tell everyone that hubby has PD as they could see immediately in the beginning that he wasn’t well due to the severe depression.

Somebody once suggested to write a list of symptoms on a card

eg.. If I speak softly, it’s Parkinson’s

If I move slowly, it’s Parkinson’s

If I am shaking, it’s Parkinson’s

If I have anxiety and don’t feel like talking, it’s Parkinson’s etc etc, and end it by saying ‘I am still the same person but I also have Parkinson’s’. Have these cards readily available to hand out as soon as a question is asked.

Good luck with it all 🙂

[GBAMIGOD]

Hi friends on this PD forum.I want to thank everyone that has contributed one thing or the other to this topic on how to deal with friends who ask questions about parkinson.Your diverse opinions has really helped.It is good that we have this kind of forum where we parkies/caregivers can communicate freely and share experiences,that makes us feel we still belong in this world.Having PD does not mean the end of the world.Thank you.

[wifeofparky]

use this as a teaching moment. There is nothing to be ashamed about. PD is insidious and affects you, your partner, your family, your real friends. Be upfront answer questions and refer them to sites like Parkinson.org where they can learn so much! God bless you both in your journey.

[GBAMIGOD]

Hi Wifeofparky. I appreciate your response.God bless you and yours too.May we get a cure to this horrible disease in our life time.Thank you.

[quilting46]

when I was first diagnosed 11 years ago at age 61, I didn't want to tell anyone and I didn't want to know much about the disease. but people at work and friends commented on my walking. I don't have tremors so it was easier to hide the PD. I wasn't embarrassed I just didn't want to talk about. I gradually started telling people. now like 'wifeofparky' I use a question as a teaching moment. April is Parkinson's Awareness Month. Many more people are being diagnosed with it and knowledge of it should become more widespread. it is not a life threatening disease, but it is no fun either.

[GBAMIGOD]

Thanks quilting46.

[Johnboy46]

Hi GBAMIGOD, when I was dxed 2 years ago I let everyone of my family and friends know straight away , and I have had support from everyone . I also tell people I meet that I have PD (the tremor in my right hand is a bit of a clue) and so far I've had no negative reactions.

[GBAMIGOD]

Hi Johnboy46. Thanks for your support. I guess as time goes on,I will accept the new journey,and feel free to educate people about it.