Cure Parkinson's

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How do you deal with not letting the disease define you?

I have a lot of friends and family that live far away and I hardly ever see them. Well pretty much never. The vast majority of them don't know what I'm going through because I haven't told them. For the longest time , I couldn't put my finger on why I try to hide the fact that I have Parkinson's. Finally came up with the words to describe how I feel about letting loved ones know. It's because I don't want this disease to define me. I don't want to be thought of as the guy with Parkinson's. Yet every minute of every day some limitation I have to deal with reminds me that I am dealing with this, be it slowness, stiffness or tremor when I try to do something with my hands, and so it really creeps deeply into my soul! You can't ignore it . How do you cope with this? I know people are supportive but I would never want to be the guest of honor at a pity party. As time goes on, the symptoms get more and more obvious, but I still feel like I'm just in the beginning of this stage. Up until recently nobody really noticed. Now it's getting really hard to not notice. I also think I might be a bit of a perfectionist and am holding myself to impossibly high standards. By the way , I was diagnosed 8 years ago so I guess you could consider my progression to be slow, so I guess I'm pretty lucky in that sense.

As of today I am doubling my thiamine!

I welcome your thoughts on this, thank you .

❤Bassofspades

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The more people you tell about your Parkinson’s the more you are spreading awareness which is much needed. And you can inspire people with your tenacity and strength. It takes a lot of courage and strength to reveal our vulnerability and pain.

May I ask, 8 years in, are you still working? I’m at a crossroads trying to determine my path forward.

Thanks for your reply. I had been working up until a month ago. Job got to be too much for me so I got approved for disability.

I’m glad you were able to get approved for disability. 8 years is a long time to work with PD. I think you should be very proud of that.

I of course don’t want PD to define me either but I refuse to be ashamed or embarrassed.

I have Parkinson’s and it sucks but I’m damn proud of how I’m handling it and you should be too. I’ve read many of your posts. You are informed and optimistic and proactive. Your friends and family should be inspired by you.

You can inspire your friends and family with how strong you have been these 8 years. But I hope you don’t mind my saying, you deserve compassion and support and TLC too.

Thank you CC my good friend !

Ah, thank you Bass of Spades! We are in this together!

It's a tough one my friend. I regret telling them at work because I don't get to work on exciting projects. Maybe I couldn't anyway. My friends all know and are incredibly supportive.... No pity parties from them. Just sometimes I see a flicker of pity in the eyes of people who don't know me well and I hate that. One day at a time.

Hi there. I totally understand and feel the same as you do. I am close to 10 years in and too was just approved for SS disability as well. Work started getting to hard after 23 years. I don’t or try not to do the pity party either but have bad days. What I’ve realized is I put all the pressure on myself to try and hide things which made the anxiety worse and what I was worrying about, nobody else was even noticing. We are hard on ourselves. This disease is a bitch, and I hate it but when I stop putting so much pressure on myself and relax some days are better. We are all in this together. Keep your chin up. Karen

Thanks Karen, you're absolutely right about the anxiety! It's pretty much gone, though, now that I don't have to worry about keeping it cool at work anymore. But it was really bad when I was working and trying to fake not having pd as that ultimately went from difficult to impossible.

bassofspades, Like you, perhaps, I don’t say much to my family about having PD, most of them live thousands of miles from me. You know, basso, I came up with the same conclusion, in that I don’t want this disease to define me! It’s so true, that, for me, too, every minute of every day slowness, tremor, or slowness, difficulty in walking, and swallowing, or painful muscle spasms, or hand incoordination, it creeps deeply, into my very being! It is definitely at the point, for me, that I can’t ignore it! As a trained musician, I know that I hold myself to way too high standards! I had spent many years, performing solo music, and acting, in the theatre,in the public arena, so it shattered my image of my ability, when some PD symptoms, became noticeable to others, when I was on stage, in front of people. Subtlety, tremor, spasms, and stiffness creeped into my performing, and people started saying to me that I looked nervous, was shaking, or looked stiff. So, finally, after 60 years, of speaking, singing, and/or performing music, in public, about 5 years ago, I quit that aspect of my life. I no longer make stage appearances, or speak in front of others, as a speaker! I had upped my dosage of thiamine, a couple years ago; however, it’s at the point where my symptoms are so noticeable, etc. that I now feel that some medicines and supplements have lost their potency, as I have progressed! Pity parties aren’t my thing- they make me feel worse, not better! For many years, now, I have used a slogan, that Henry Ford II, was famous for “Never Complain, Never Explain”! It works! Every day I feel lucky that, if I had to get a neurodegenerative disease, that it is PD, rather than Alzheimer’s, or Lewy Body Dementia, or Amyotrophic Lateral Sclerosis! So, things could be much worse for me, and some others have to suffer much more than I, in terms of living with a cruel, debilitating, incurable disease! Remaining positive in my thinking, and actions, accepting what is, and not ruminating on what I’ve lost, is my so-called way of living my life, these days! Thanks for sharing your perspective, from one “basso”, to another! DM

And thank you for sharing your perspective, my good friend ! Thinking about how bad a neurological problem could potentially be reminds me that we got off relatively easy with the hand we were dealt.

For sure basso! Stay safe, and enjoy the music!

Hi i can relate to that....i am also a musician had to give up performing as strumming guitar became jerky and fingers seem to stick playing clarinet and sax.Devastated then to find out its PD and still not come to terms with it...all the best Geoff

Geoff! I can relate, dude! Tell me about it! The cogwheel rigidity of PD, along with tremor, defeats my trying to play a stringed instrument, or the piano! I minored in piano, in college! I’ve had PD for close to 15 years, and, as it progresses, I have had a difficult time coming to terms, with being unable to perform music. Doug

I am doubling my thiamine (2000 to 4000mg) to try to raise enough energy to get some of my lost talent back. Thats all I can think of trying. I pick up the guitar/bass/keyboard/drums with the intention of an attempt to practice and this dang dopamine shortage sabotages my motivation almost every time. I'll report back in 4 to 6 weeks with the outcome.

Yeah, man! Let us know if doubling the thiamine supplementation helps! If so, I’ll try it, maybe, and hopefully, at least, get back to practicing drums, if not the keyboard! Thanks for your reply, basso! Good luck, dude!

Are you concerned about high blood pressure upping the dose, I would like to do that for my husband but it does raise his blood pressure

Im not worried, i take bp meds anyway

I look forward to it .I get depressed about losing my singing voice...im fighting back exercises every day now its coming back

"Every day I feel lucky that, if I had to get a neurodegenerative disease, that it is PD, rather than Alzheimer’s, or Lewy Body Dementia, or Amyotrophic Lateral Sclerosis! So,"

Well said! In your, Bass's and my husband's misfortune, you are fortunate not to have all these worse neuro conditions.

Amen, sister!

When I am having a bad day ,I always think there are people worse off, you just need to look around and see.

😕

Exactly!

I sorta say to people ... " Even super cool people like me can get Parkinsons" .. but I know what you mean , going through it myself at the moment ... I was like mr party time , artist , and thats how I defined myself .. like yourself I diddnt tell anyone outside my immediate circle as I diddnt want the 'stigma' ... but in general I feel better for 'letting it out' as , again like you , I am at the stage where you cant ignore it anymore .... people are generally supportive ... and I think it helps to re- evaluate YOUR response to it ... ask yourself this .. do you think less of Muhamad Ali because he succumbed to PD ? ... no .. of course you dont ... he is still the greatest ..... Micheal J Fox .. is he the 'putz with PD' ? .. no ... he's a highly successful and charming man .. my point is , dont assume people will define you any differently than they already do

I love the way you put it ! Thanks my good friend !

Actually, you already know how.

Talk to me, Marion! I know you're the one person who can spell it out for us, here! Come on , make it easy!

Ok, but remember, you asked for it.

Think of "5 stages of grief." One way to look at it. This is not my best suggestion though, might be a supplement. Alternatively, think "Goldilocks." (If I tell you more, you won't figure it out or benefit...making it too "easy" will actually backfire, like buying a calculus grade and then on the job you find you actually have to do it to get paid.

Most important thing: Don't ask for or expect support, it's your problem not anyone else's...i e., seeking to make it "easy" for you by making it a pestilence and burden for someone else. That's not very friendly, not the act of a friend or someone you say you "love," is it? No it is not. ("Here, I have this bag of shit, you're my friend and loved one, so here, you take it off my hands...along with all your own shit, now you get to have mine, now it's your shit, aren't I a good friend? Aren't you lucky to have me?")

Friends offer support (but don't demand it) which you may accept, but if YOU are a friend, then you cannot ever expect it nor demand it..., expecting leads to demanding and then extracting it, which is never the act of a friend, but rather that of an enemy or predator (it will also lose you your friend or loved one in the long run, especially if it then leads them to discover that, contrary to the popular myth, blood is really not thicker than water...in fact, we do some horrible things and take some horrible liberties in the name of "family"). You won't keep friends unless you are a friend (includes formals like family or "loved ones").

Rather, think "Goldilocks," you are contorting yourself (thus adding to your own anxiety needlessly) due to resisting and fighting a reality...instead, stop resisting, and accept it..."Accept." Things you herein complained of will then moderate from both ends and for the long term. And then it also will cease to "define" you.

Some things you may ironically best get by not overtly pursuing them...at least in and for the long run, and the kind not given with resentment that will eventually eat it away anyway... what in this case you mean by "support" among them.

And like I said, having been around the block a few times in life, my guess would be that you probably know that already.

I'm sorry but to be blunt this is a negative and weak outlook. Yes it's healthy to accept what you have been given , and yes not always can you rely on blood, I sure don't, buy by golly he can't give up, life can sure throw you curve balls. There is still heaps he can do, support groups, inc this forum education, research, thinking out side the box, help others even if its thankless (it's better to give than receive)

Thinking so damn negative will avalanche the situation

Not at all. I didn't rule out the heaps he can do, you really ought to think things through before you blurt them. Clearly you are no psychologist...not to be blunt of course. In fact, what I suggested is not very different than what you claim to have done in your own profile or had you forgotten or not really believed in the first place in what you say there?

Thanks Marion! I just wanted to tap into your psychology background and get your opinion, and to make sure I'm not missing something key. PD can be at least as much psychological as it is physical. Fighting an undefeated opponent can get frustrating, submitting to it can be defeating. Goldilocks would choose that which is not too hot, not too cold, somewhere in the middle . So balance is the secret. I now see that acceptance is the best way to go forward because then you can stop the nonsense and just get on with it. It's inevitable so why waste so much energy? Am I on the right track here? Of course, hope is what propels us forwards and drives the fighting spirit. You need this in order to stay positive. But a dose of the reality of the present keeps us grounded.

I would never try to dump my bag of shit on loved ones expecting them to shoulder my burden. This bag is my bag whether I like it or not . My expectation, as I mentioned, is that all I would get in exchange is pity and stigma, which is exactly what I don't want . Of course, Goldilocks still appreciates a shoulder to cry on once in a while when things get really dark.

How would you react to a loved one who had PD? Would you give pity and a stigma? I am happy to be open, and try a bit harder to let Sue in. I'm not a natural at accepting help (interference). But Sue needs reassurance too, so I compromised and agreed to a team approach. We formed team PD.

I'm almost certainly a better person for not trying to do it all alone

Don't look at it as a bag of shit. It is a constraint. Constraints can become opportunities. Take the view of the Stoics: The way around is through.

Most people, even close friends and relatives are unaware what PD is really like. Unless you spend a holiday with them 24/7 they simply don’t realise. My husband has had PD for 5 plus years but didn’t get diagnosed til 65 so he hd retired by then, and so didn’t have the decision to make about leaving work. I know you love playing your guitar and making music so you have an outlet for your creativity. Not working should lessen stress and anxiety so you can choose things you want to do. I don’t know how disability works in the US, hope it provides sufficient income for you.

People that haven’t seen you for ages may notice a difference, it matters to my husband but I just encourage him to go out with colleagues and friends. I get cross with people who tell him he looks worse.

In his friendship group, a couple of friends have had a stroke causing them eye sight issues one s had prostate cancer.

Most good friends think he is managing well, and are in much admiration.

My husband has also found his escape into Art a huge boost to his soul recently. It’s helped him feel that despite PD, he can share this with others.

All the best Bass, keep strumming and being yourself.

I’m very new to the pd experience, so I don’t have anything enlightening to share. I just want you to know you have inspired and moved me with your post and the comments back to you. We truly are all in this together. A group of nameless and faceless people rooting each other on. I hope this new chapter ahead is filled with things that enrich your life.

I don’t think many people pity me Bass. In fact, sadly, I don’t think they me a second thought. Most people are so incredibly self centred that they just don’t have the compassion to extend to others, and that incPWP. Hell I can’t even really get my family to discuss my disease! Maybe they don’t know how to do this? But I’ve never actually had a problem with defining myself via the disease. I always thought that that saying ‘I have Parkinson’s but Parkinson’s doesn’t have me’ was rather trite and unrealistic. There’s more to me than Parkinson’s for sure, but it’s probably the most dominant force in my life and I don’t have any issues admitting that.

Very well expressed jeeves19. We need more compassion expressed toward others, these days, and I wish that support for PD patients, would be stronger, within some families, because having good vibes and getting along well, in a family, is helpful to people, and can make a huge difference in PWP’s lives! D

Thanks Doug. Always warming for one’s soul when you appear with your kind words 😊

Adam, by the way, I put as my Avatar, Corky, my Bichon/Havanese, picture, on Health Unlocked ( Cure Parkinson’s! ).

🐶😊👍

Bass.....hearing you stopped working really brings up mixed feelings for me. I am happy your anxiety is relieved and stress is probably greatly diminished. As a medical provider, I know how much my contribution of a job well done matters. I know you did your job well, and as a result, the medical world is less than now without you. I think these are such hard decisions....choosing who to tell and how to continue with work, etc. I have found that very few people will ever be able to really understand what you are going through. I don't feel like I hide my PD, I just don't have a need to share something that no one can do anything about and most cannot begin to or try to understand what it is like. I also don't want it to define me or dominate any conversation. I don't want or need to be reminded over and over that I have PD. The people I have shared with have a direct impact on my life (friends I see, neighbors that surround me, etc. ) and can/will support me when I need it. All others would just feel "bad" for me. That is the last thing I want. I have a friend from high school that has advanced PD. I am close with him and see him every month. We gather and we treat him the same as we did in high school. It is a safe space where he can tell us what he is going through. We ask and we listen. We have a larger circle of high school friends that know he has PD. I HATE when it is brought up in this group as everyone feels "bad" for him yet no one ever reaches out with any support. It is like "gossip" more than anything. I don't have the answer. I do feel that my body has PD, I am not PD. I also feel lucky that I only have PD. I recently had my mom and sister die from cancer. I saw every day what they went through. I can't possibly know all they quietly endured. Some people were helpful and cared....the rest went on with their lives and never had any inkling or concern the pain and suffering experienced and the care required. I guess that taught me to just take care of myself and do everything I can to help me, Focus on the people who can/will help me and share what PD is like with them. The rest, it simply doesn't matter. It's not that I am hiding something....it simply doesn't matter if they know or not. It doesn't change my suffering/journey or impact me positively in any way. PD is your journey....do what you want, what feels right to you. There is no right or wrong. Dr. Mischley recently told me she would love to see PwP become more proactive helping other PwP (like what we have here on this forum). She is trying to convince me to move from pediatrics to specializing in PwP. I'm thinking about it. Focus on what you have to share with other PwP, lighten their load. Who knows better what its like to have PD and the suffering involved than us! Be the support you know PwP need.

This is a great question and i guess we all approach it differently.My close family know about the PD but friends and neighbours not yet.This suits me because i dont want their pitiful well meaning looks and condolescenses .....this is how i cope for now....still have not come to terms with it after 1 year diagnosis and occasionaly i go in to melt down...hey ho...wishing you the very best cheers Geoff

bass. I parallel your PD journey, with time diagnosed and symptoms. Now that the pandemic has peaked, the hotel I’ve worked in for 31 years will reopen in June. It’s a physical job and I may too be resigning. I’d like to approach HR with my disability. Any insight as how I’d request “disability” would be kindly appreciated.

@parkylot, I suggest that you take a letter from your doctor, a supplemental letter from your social care worker and show up "tremoring" or with freezing gait as the case may be.

You should be approved.

RKM

Thank you. I have an appointment with my neurologist July 1, so I’ll get the letter you’ve suggested.

We definitely run parallel, so let's follow each other closely! I was very afraid of letting the cat out of the bag at work for thinking that they would try to get rid of me. But surprisingly, they were supportive in that they recommend that I fill out an Americans With Disabilities Act form with my doctor outlining what I can and cannot do. The idea was that they would try to find me a suitable position if I ever eventually got too bad to do my job. I think they were probably afraid of violating any rights. A year later , i started to reach that point and we started looking. I decided that activating my disability insurance policy would be the best route for me because if I did go with another position, how long would it be before I couldn't do that ? And then we wind up chasing this thing down the rabbit hole until I ultimately get to disability anyway. Just note that I got short term and long term disability insurance that pays 60% of my base pay tax free, not government SSI disability insurance. First thing was get my neurologist on board. That's your ace. I think a Parkinson's diagnosis is pretty much a slam dunk for disability. Next I told HR that I have Parkinson's disease and it's affecting my ability to do my job . They told me that starting the very next day , I'm going to apply for medical leave of absence until we could figure out if there's another position within the organization. The next day I called the fmla people and immediately after I talked to the disability insurance people and got the ball rolling. Two weeks later I got my first check. Good luck my friend ! It ain't easy going through this!

Bass My new buddy. Thanks for the thorough response.

Of course I’ll keep you informed every shuffle of the way.

My union crew can’t live without me so they’re supporting my return. I’m afraid I’m not 1/2 the man I used to be, post pandemic. Being a waiter in a NY hotel is a hustle At this junction, it’s one step forward two back. Actually I have one foot out the door the other one's frozen. I’m already collecting social security and a pension so disability might be a stretch.

Thanks Joey

Looks like I have two tags: JoeKev and Parkylot

i was wondering about that. I dont know if you can collect from all three, but nothing ventured, nothing gianed! The least you could wind up with is the same as y ou already have. For many years, I secretly wanted to be a waiter, because I thought I would be really great at that! No chance now, I'd be dumping food and drinks all over the guests!

A rookie manager asked me to carry a tray of champagne. I said no. Bad enough the food tray’s on an angle. Occasionally I’ll do the bar, shakin’ not stirred. The alcoholic waiters refuse, to tempting. We’re in a strong union. Older waiters joke that we’re dinosaurs.

If your like me, when I’m working, no tremor.

Bass,

Here how I "define" you: A fighter, a warm-heart person with great humor! "All these lucky mice" you make me laugh every time I think this expression of yours.

❤thank you ! Your husband is a very lucky man!

I was diagnosed in 2013 (so 8years). I accepted the PD as gift from God that will enable me to transform in ways I have never imagined.

I do whatever I can and whatever will help me. Mostly variety of exercises which includes physical (7days a week), mental by joining Toastmasters and Improv Theater Club and spiritual--meditation, Qi Gong and helping at food drives.

Join the PD Performance Group at:

tightropetheatre.com/shows-...

As per Michael J Fox, "Happiness is directly proportional to Acceptance and Inversely proportional to expectation." I believe finding a purpose with whatever cards I am dealt with allows me to play the best game with the cards I have.

Accept the present as is, without any judgement. Artist Phil Hansen discovered that “Embracing a limitation can actually drive creativity” (watch his TED talk.)

youtube.com/watch?v=YrZTho_...

I am open to listen and help in whatever capacity I can.

Wow! You're absolutely amazing in the way that you make such a nice cool pitcher of lemonade out of those lemons! Thank you for the inspiration!

Thanks! I am truly grateful for what I have and my ability and I express these by using them to the fullest now because I am sure that if I don't use it, I'll loose it!

I think you can carefully choose who to tell, depends on who you think will give you the kind of support that would be helpful.

Several years ago, I mentioned my diagnosis in a group, and a woman came up to me afterwards and said “Oh I’m soooo sorry, I had a friend who died from Parkinson’s and its such a HORRIBLE disease!!!!” I regretted having said anything!

I want people around me who know how to acknowledge my strengths, and enjoy my company. Isolation can be a big problem (I’m dealing with that now as all three of my best friends have moved or are moving out of the area).

@rebtar, well said and recounted. This is precisely why I chose not to go to a Parkinson's group when my MDS suggested it. In fact I was wary of meeting other PwP's who might be more advanced than me and getting further demoralized at the very beginning.

In this battle with the disease / disorder, it seems like a no win situation. This kind of anonymous forum is the best way to vent.

RKM

Bass, I think that I might of mentioned that I think you worry too much. When we were young, the world waited for what we had to say next. We are the Boomers and we reshaped institutions , government and business. However we really dont matter so much any more. We did a good job in a lot of ways , but we held the reins too long. We take this irrelevance and loss of respect / importance/ influence , personally and we should not, because it is just something that is a natural evolution of handing off to the younger next generation.

Hiding your PD is a form of denial and one can get wrapped up in a self pity , and it can lead to depression.

Open the doors ,contact your relatives , call up your friends , time to do things , have fun, Enjoy yourself , it 's later than you think. It will never get better than this.

No time to waste , go buy a brand new car. I just did and I dont drive, my wife loves it. There will be memories left after your gone but that is pretty much all.

Rejoice you are alive , make the best

@gymbag, your enthusiasm is infectious 👍🤗

RKM

PD Is shit, buy I will not be told by anyone or anything (even a skank ass disease) that I must submit to it. I've had a hard upbringing but I've always fought, and never chucked in the towel. I have 2 young boys and a wife that I love and that need me around.

I've had my moment of tears and that is all I'm giving PD, off is the direction it can f**k. I don't care if im on my knees in mud im still crawling forward.

If you give your fears the power they are sure to manifest, this is only Parkinsons, and if it'd going to try to take me down.... it has a hell of a battle from me

Way to go, buddy! That's the right fighting spirit!

RKM

Had a thought, probably nonsense but here goes. Maybe you need to get your grief dealt with about all you’ve lost. Tears might help. Sobbing and wallowing would be my style. After the storm, and clearing the air, maybe you can open up with frankness and admission of vulnerability.. Do you think grief have might have blocked communication?By what would I know, have just a stroke so along with PD have lost my marbles.

Following....”frankness and admission vulnerability”. Sorry, my language impaired by stroke now. Tends to be pompous & pretentious, with admixture of twaddle

Actually Woofiel , I think ya hit the nail on the head. It was clear , concise , and I think correct . Confidence will return.

Thanks Woofie for kind words

🤣

Hi bassofspades, I hear you, I am 5 years into diagnosis, 6 years since symptoms and people say things like 'you are an inspiration' but I am not, I live each day one at a time- some days I go into regret for an hour or so, I tear up very easily nowadays but then I remember that my brain, my gut, my body, can produce my emotions and moods and can produce amazing chemicals to either support or hinder my journey - so I remind myself daily that, we humans are incredible at adapting so I can adapt, no matter what comes at me I can adapt. Be the best we can be.... that's all we can do and that's enough.

Pd is nothing to be ashamed of. You did nothing to cause it to happen. I tell everybody I have it and if I am clumsy and break something I apologize and get on with my life. If I am able to replace the broken article I do.You have to be positive and treat every symptom as a challenge! If your hand shakes then concentrate hard on holding it still. If you have a resting tremor then clench your fist or splay the fingers out and hold them like that. Then they don't shake.

There are lots of things you can do to overcome various movement problems, like holding the glass of water from behind the glass, instead of the side. Hold your fork facing you, when you eat, instead of pointing way from you.

It is not quite that simple but your on the right track, but each of us experiences PD very differently. A time comes , you will need to get angry and fight . It will be the most difficult thing you have done , but you must. Happiness is a state of mind.

Be happy.

Agreed! Fighting for something is totally different to fighting against something. THe one is positive and it makes you feel good, but the other is destructive and can ruin your life!

My own approach is to tell a select few and let it seep through the grapevine. I don't make any big announcements but I don't deny it if I'm asked. My answer to the question 'how are you doing' is always 'just keeping the show on the road' which is pretty much the truth. But there is no doubt this thing sucks and you do want to lash out at times. You just have to get up every day and face the music.

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