Friends?: About a month ago, I wrote to all... - Cure Parkinson's

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Friends?

jeeves19 profile image
91 Replies

About a month ago, I wrote to all of my closest friends via WhatsApp. Some of these I physically see on a roughly weekly basis, some are univsersity houses mates who live miles away, some are dear friends who've moved abroad. They all got the same communicarion. It went like this : 'Hi. My world is shrinking after having had PD for a number of years. I have to own up to being lonely and bored at times. Loneliness is reputed to be as damaging to your health as smoking. Please communicate with me occasionally to remind me that there's a world out there.'

There was an immediate flurry of activity and response but rather like the explosion of attendance at a funeral, followed by the spouse of the deceased feeling alone and abandoned, it didn't last. I'm amazed at how many of them receive a post from me which might contain a clip from some comedy show or band performance, only to click on it and then say nothing about it. Rarely do they say 'thanks' or 'd'you remember when we went to see them in .........?' They just appear to assume I'm a purveyor of amusing tidbits who then they ignore.

And as for the occasions when they actually send something indpendently of some encouragement me. I invite a couple of guys locally out for a walk with our dogs mosy weeks. We always have a good chat, sometimes a coffee, but woe betide the relationship should I fail to say 'd'you fancy a walk this week?'

All of the cliches are wheeled out when I try to discuss this with my wife or another observer: people have busy lives...................they don't know what its like to have PD...............they've got their families to take care of......................maybe they don't think....................

Or maybe my wife made the most accurate observation this morning 'Most people are just *hit'. Quite. Discuss?

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jeeves19 profile image
jeeves19
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91 Replies
Gymsack profile image
Gymsack

You are a giving and sharing and outgoing person and you appear to think everybody would share these characteristics. well they dont. People with Parkinsons must of necessity keep very close watch on all of their health indicators and watch for signs of need for medication plus you have just been through a very traumatic experience , plus everyone likes to talk about themselves so the result is something that all people with PD will experience and be guilty of . That most conversations are about PD and you. Any one having an intelligent conversation understands that one must always be conscious of how much time you are listening and how much talking and how much of the conversation is about you and how much is about what the other guy wants to talk about.

I went to a funeral of a very old friend who I used to go fishing with 4 or 5 times a year and there I met friends that we shared and other people that he was friends with and it surprised me that they knew him for differant things and there were very few of us that were his fishing friends. I did not even know that he was a gardener or that he went to various activities. How would it be possible that one same letter sent to each of your friends could touch on their special relation ship with you. Try a phone call instead of a letter and do not send form letters.

Do not expect so much of the world and you will not be so disappointed , they are busy with their own lives . Personalize each relationship include something about them. OK I have talked enough, your turn.

PS what is so bad about Cliches if they are correct

and one more PPS

uncharacteristically for you , you are not listening, your wife is very wise

pdpatient profile image
pdpatient in reply toGymsack

Gymsack What trauma are you referring to? DBS?

jeeves19 profile image
jeeves19 in reply toGymsack

Thanks very much Gymsack

Bunny622023 profile image
Bunny622023 in reply toGymsack

I thought this was great retort gymsack also. Especially your last line... "Not listening" and your 'wife is very wise'. It seems many people do not listen, not just hear, but listen to what their respectives are saying to try and help. My husband with PD is not listening to me 90% of the time...... sigh !! I get the answer from him - 'it's a man thing'. Ugh - no it is not.... it's a not focusing or not being able or want to focus thing.😆

pdpatient profile image
pdpatient

Agree completely, jeeves19 Unfortunately, others expect the same level of communication and commitment as it was prior to diagnosis.

LeharLover62 profile image
LeharLover62 in reply topdpatient

One of the hardest things for me has been since hubbys speech is terrible, his friends have stopped answering his phone calls. It’s heartbreaking.

pdpatient profile image
pdpatient in reply toLeharLover62

LeharLover62 Yes, of all the difficulties and disabilities that one can have, speech issues is the one with the most cruel outcomes. It's a double whammy because not only do others shut the patient off, but the patient also tends to shut themselves off from others as well.

jeeves19 profile image
jeeves19 in reply toLeharLover62

That’s so sad. Has he had Pd for long? 🤔😞

LeharLover62 profile image
LeharLover62 in reply tojeeves19

Yeah about 18 years now…and he’s only 61. But with the speech and cognitive issues, he can’t have DBS. You are fortunate.

Bunny622023 profile image
Bunny622023 in reply toLeharLover62

Gosh I really hear you there. We have the same issue and some friends said actually, no I can't do this, when my husband wants to go out with them, they don't want the responsibility. Fair enough, I'm not going to force them, but it's very very sad as you say. Some people are not able to give like we as caregivers can and do.

2bats profile image
2bats

I for one enjoy reading your posts and I admit to being remiss and not replying or commenting on them. I feel you are correct about people in general. I like Sartre’s comment which translates to ”Hell is other people”. Everyone has a tendency to be at the centre of their own little universe and there are only a few who have the empathy to appreciate just how hard it is for us to get out of our shells and mingle with people who don’t have PD

They say you shouldn’t criticise anyone until you have walked a mile in their shoes - and it’s true, because then you’re a mile away and you’ve got their shoes!

Please keep posting as we do appreciate it even though we are often too lazy to say so.

pdpatient profile image
pdpatient in reply to2bats

Amen 🙏.

jeeves19 profile image
jeeves19 in reply to2bats

Thanks for that 2bats

Gymsack profile image
Gymsack

well said 2bats" and you've got their shoes " love it

LindaP50 profile image
LindaP50

Hi. Well, I for one like hearing from you on HU.

People tend to be so busy with constant interruptions from texts, news alerts, checking the weather, and more, they react quickly to notes from those who may not be in their immediate circle, even though friends. Then, seeing them in person they are warm and welcoming so different from the persons who had their heads buried in the cell phones/tablets.

jeeves19 profile image
jeeves19 in reply toLindaP50

Thanks Linda 🙏

Gallowglass profile image
Gallowglass

My world is getting smaller geographically too. Luckily I have a kind and patient spouse, and two kids who call weekly. Also I’m a member of two church groups that meet weekly to pray for people and they keep in touch with disabled members. One group specifically asks us to call a homebound member each month.

jeeves19 profile image
jeeves19 in reply toGallowglass

Thanks for that contribution 🙂🙂

jeeves19 profile image
jeeves19

Thanks for the kind words above. I’m not criticising any members of this group btw, just my non-PD friends who I grew up with and have maintained a friendship with for many years. I find it pretty difficult filling all of the time I have on my hands if I’m being honest: I watch documentaries that I find on YouTube, take my dog for a walk, play some guitar, try to carve some wood. I’m playing chess recently and take on anonymous players from around the world (if any of you fancy a game, let me know btw). But filling the day and evening every single day can begin to be a grind at times. New research has cast light on an essential difference between extroverts and introverts: the latter need time away from people to restore their social batteries whereas extroverts conversely re-charge themselves by engaging with others. I’m from the latter group and this is why I find isolation a challenge.

Grumpy77 profile image
Grumpy77 in reply tojeeves19

You still play the guitar? Wow that's good to know. Due to tremors, I've lost much of the ability of fine movements. Kudos and keep it up

jeeves19 profile image
jeeves19 in reply toGrumpy77

Thanks. Played for 50? years now. Having said that I feel less and less inclined to play as my original aim to be in a band is a distant memory. That’s not to say it was never realised. Played it n many good groups but it won’t be happening again soon.

Bunny622023 profile image
Bunny622023 in reply tojeeves19

I really like this post Adam.... I think extroverts and introverts as you describe, are spot on. I'm extrovert and am always trying to engage and with a husband who is quieter, and pulling back from engaging because of PD issues, it's difficult because isolation does get forced on one, with PD or not. Just know that many of us understand what you are dealing with, and how to find the connection with others of 'like' mindedness or just people you 'click' with is never easy with or without PD. x

Nicopwp profile image
Nicopwp in reply tojeeves19

i d love to play chess. my chess.com Nickyfresh382

jeeves19 profile image
jeeves19 in reply toNicopwp

Thanks Nicky. We may have to arrange a suitable time to play as I’m U.K.. where are you in the US so I can consider timings?

bassofspades profile image
bassofspades

someday when I get my yankee arse over to england, I'll hang out with you! I know we would have a blast!

jeeves19 profile image
jeeves19 in reply tobassofspades

Thanks. I’ll respond to your message now btw.

CuriousMe12 profile image
CuriousMe12

You get a new perspective on people and your relationships after you tell them of your diagnosis. I'm involved with 2 or 3 parkinsons groups and found a few active members that I have a greater affinity with than weak 'friend's of 50 years standing.

I'm kind of glad I've found them out while I'm living.

park_bear profile image
park_bear

I spend most of my time alone and I like it because I feel like I abide in Divine Love. I credit my Qigong practice for this. Not for everybody but it works for me: healthunlocked.com/cure-par...

jeeves19 profile image
jeeves19 in reply topark_bear

What a marvellous state to have achieved. Wish I had such insights.

bassofspades profile image
bassofspades in reply topark_bear

that attitude, PB, will get you EVERYWHERE you need to go! Bravo, bear! great post, by the way, that you linked.

park_bear profile image
park_bear in reply tobassofspades

Thanks for your kind words!

CuriousMe12 profile image
CuriousMe12 in reply topark_bear

Park that post gives me hope.It was 7 years ago.Can I ask what sinemet dosage you're currently on 9.5 years on from diagnosis and how your PD is progressing?

I'm 6.5 years in and practice Tai chi along with other physical activities. I zero or under medicate. But take a 12.5 sinemet before a tai çhi class, or other physical exercise, to maximise the effort . I'm guessing I'll need to increase with Time.

park_bear profile image
park_bear in reply toCuriousMe12

I take two and a half doses of C/L ER 25/100 over the course of the day, same as 7 years ago after my partial healing with Qigong. A bit more prone to dyskinesia and dystonia. Similar motor impairment, maybe a bit more. Deepening my meditation practice which I believe helps.

CuriousMe12 profile image
CuriousMe12 in reply topark_bear

That's good. I'd take that 9 years iñ.

Grumpy77 profile image
Grumpy77

It might surprise you to learn that I prefer being alone most of the time. In fact being alone for me is peace and quiet. And I'm able to think with a clear mind. Having people around can be rowdy to me a lot of times, and can even trigger PD symptoms

I get my adrenaline kicks though by watching some sports like f1, footy or getting in the racing simulator myself, otherwise being alone is gold to me

jeeves19 profile image
jeeves19 in reply toGrumpy77

No, it doesn't surprise me as I'd conclude that you're a classic introvert who feeds off solitude. Wish I was more like you!

1rocketman profile image
1rocketman

I rarely post, but had to add my two cents worth. My husband with PD was diagnosed in 2017. Prior to that, he was a very capable fire department captain and the rock of our family. Many people looked up to him and he was always greeted and welcomed warmly at fire department events, and amongst his friends. Fast forward, while he has had DBS, he now has a low voice, not so dynamic anymore, and more subdued. Good friends don't come around as much, and talking with him in the softer voice leads to short, awkward conversations with friends who mean well. PD has taken so much away from our lives, but I don't fault people for not understanding it. I see in their eyes that they are sympathetic, but cannot bear to see this once-dynamic man who has gone through a rapid aging process due to this disease. We live with it every day and we are still baffled by it's inconsistent nature, so I tell my husband not to be hurt by their lack of understanding. People are sometimes afraid or intimidated by things they don't understand, and many are awkward with how to deal with it. We have since found new friendships shared by people going through similar situations, and it is nice not having to explain or excuse anything. My recommendation is to forge new friendships at a PD support group. I arrange dinners and lunches occasionally with PwP and their spouses, and everyone enjoys these outings. There is still so much of life to be enjoyed; let go of people, things or situations that no longer serve you. We cannot change other people, but we can always adjust our attitude.

I wish you the best of luck!

Bunny622023 profile image
Bunny622023 in reply to1rocketman

WOW rocketman - I'm reading this and I felt like I had written it. It's identical to our lives with the way people are.... and it's just 'life'..... we have to deal with it. Bravo !!

park_bear profile image
park_bear

Glad to be able to say that I get along well with the people in my life.

CuriousMe12 profile image
CuriousMe12 in reply topark_bear

I believe you would get on very well 🙂

MBAnderson profile image
MBAnderson

Maybe it's your breath? 🙂

jeeves19 profile image
jeeves19

That’s such a nice contribution. Thanks for it. Much of what you say chimes true. My only area of non-agreement is the PWP who I’ve never had much to do with although I’m delighted that you do. I think my problem stems from the fact that there never seemed to be many people of my own age in our local group. Those that were weren’t really my cup of tea as people. I remember thinking ‘I’d have nothing to do with you if you didn’t have PD’, so I let things drift really. 🙄. Typical of me sadly.

LAJ12345 profile image
LAJ12345 in reply tojeeves19

Fair enough, I did the same for the “spouse support group” who were 20 years older with their husbands all in resthomes. Nothing in common really.

1rocketman profile image
1rocketman in reply tojeeves19

Hi Jeeves, I should amend my post from “find a PD Support Group” to “find a group where you feel supported”, PD or not, whatever that translates to you. Fortunately for us, these are folks in my husband’s boxing group, most of them very pleasant, funny people, but I understand why you would feel you have nothing in common with a PD-based group. I personally do not like going to Spouse Support Groups — I find them sad and depressing; my time would be better spent going on a hike or walk.

I love your comment, “I’d have nothing to do with you if you didn’t have PD” — I often think the same thing about family! 😀. I sincerely wish you the best!

jeeves19 profile image
jeeves19 in reply to1rocketman

Thanks so much. The goodwill in your post is nice to receive.

gingerj profile image
gingerj

I think that friends and colleagues who you haven't seen for a while are often reluctant to get in touch or invite you to a get together, because they don't know how bad you are and imagine the worst. I have lost touch with numerous people since letting them know about my diagnosis. I guess it's up to us to keep those that matter most close and up to date.

jeeves19 profile image
jeeves19 in reply togingerj

Thanks Ginge. Are you going to have the DBS or are you still weighing up your options?

gingerj profile image
gingerj in reply tojeeves19

I'm going to have it. Not sure when it'll be scheduled yet. Not had a date. If however they were to offer me the produadopa first, I'd give that a go. I guess I'll know more next tuesday.

Reading the responses I certainly agree you should possibly lower expectations of others. Are you not guilty of the same in certain instances? We all move on and its virtually impossible to maintain all past relationships. Time sorts the wheat from the chaff! The people I stay in touch with have one thing in common, a strong shared interest in "stuff". I don't talk about myself but about "stuff". Rugby, Football, Politics, Religion (albeit dodgy ground in the latter two) .......

jeeves19 profile image
jeeves19 in reply to

Cheers for that 😊

sunflower_79 profile image
sunflower_79

"Do not expect so much of the world and you will not be so disappoined" as Gymsack said. Best advice, regardless of the disease. I've been following that rule for about ten years and my life is much better. If only I had understood this earlyer!

Bunny622023 profile image
Bunny622023 in reply tosunflower_79

Spot on sunflower - expectation level. I think it's like giving, and expecting nothing in return. There is a huge amount of satisfaction in keeping in touch with people, helping someone out, with or without PD - helping someone across the street, giving the homeless man a coffee and cake. It's all satisfying and I wish for nothing in return as it's an automatic 'hug by a huge warm cloud' every time to see their faces. Less expectation - a win win situation.

in reply toBunny622023

Spot on yourself Bunny! Altruism combined with Co-operation theory. Now that's a recipe for a much better world than we're offered by our leaders! The problem is that pesky "selfish gene".

Bunny622023 profile image
Bunny622023 in reply to

Thks - do you think people can unlearn being selfish? I've had more people tell me off over the years for giving to 'street' people or the cliche that's around on social media lately "giving to people of your time that aren't worthy of it" than I'd care to remember, so it's a little sad to think it's something that can't be unlearnt.

in reply toBunny622023

It can be unlearned but the pre requisites are intelligence and an understanding that co-operation trumps defection in the long run. Sadly the vast majority only see the short term gain. If they taught co-operation theory in primary school we might stand half a chance.

There was a TV program many years ago that highlighted the theory using children. A variation of the Fishermans Dilemma.

Two kids were instructed that if they cooperated they'd be given a chocolate bar each. If one cooperated but the other defected, the defector would get 2 bars and the cooperator no bars. If they both defected neither of them would get a bar!

The game was played over 10 rounds.

In the first round the first cooperated and the other, figuring there was an advantage in defecting promptly did so. Coop 0 Defect 2. The second round predictably saw the cooperator thinking I'm falling for that again and so defected. The defector from the first round figuring there was nothing to be gained by cooperating defected again. The third, fourth and fifth round same result. By the sixth round the penny began to drop that they were not being given chocolate bars and so they started to cooperate!

Result Cooperation 5 Defection 7

But of course if they'd both cooperated from round 1 they'd each have 10 chocolate bars!!!

If you played that game with Donald Trump he'd figure he'd won and that is all that mattered!

Bunny622023 profile image
Bunny622023 in reply to

I love it ! That's great.... thanks RienPoort.

1rocketman profile image
1rocketman in reply toBunny622023

Keep doing what you're doing! I volunteered at a soup kitchen for homeless people. The people that ran it were positive, fun and caring. Some were recovering addicts. Being that they were so positive, I followed suit and treated everybody coming in cheerfully and like they were a paying customer. Some people were clearly nuts, but I cannot tell you how many people with children came in just for a warm meal; one guy came in wearing a suit like he just lost his job and wanted to keep his dignity. One guy came up to me and said, "Thank you for treating us like we're human..." that was the best! All that to say, we don't know what these people are going through. If it makes you feel good to help someone for the cost of a cup of coffee, that's cheap and easy. Keep going!

JH23 profile image
JH23

Trouble is once DX with PD you feel different, you look at other people living their lives 'seemingly' without a care in the world, however scratch beneath the the surface of most other peoples lives and they will have 'something' or multiple 'somethings' going on in their lives, so, if possible, try not to judge your friends to harshly after all we all live in our own universe. Hows life with DBS?

jeeves19 profile image
jeeves19 in reply toJH23

Thanks. It’s ok. Certainly isn’t a cure or anything but in my nurses words ‘the dbs carry’s about 50% of your symptoms’. Put that way, I’m very thankful for it. It’s easy to forget how bad life was getting beforehand.

Bunny622023 profile image
Bunny622023 in reply tojeeves19

That's one thing we found the other day Adam.... Haven't had the DBS turned off for some time, but my husband had thought he had charged up enough but hadn't. First time since 2018 this had happened. Well the instant dyskinesias and feeling unwell certainly was instantaneous. Rather a brutal reminder.

jeeves19 profile image
jeeves19 in reply toBunny622023

Too true Bunny

JH23 profile image
JH23 in reply tojeeves19

Thanks Adam, appreciate your honesty.

Gymsack profile image
Gymsack

This has turned into one of the best, deepest exchanges of real life discussions I have seen here and it has helped me . I have been reminded that I am not the only one who has these problems and circumstance . I often have given myself good advice by listening to what I say to others and marvel that I did not see it, in myself. The strength that others use to hold together is transmittable and can be shared and sometimes at our weakest it is all we have. I recently had a similar down period myself .

Yes , important friendships are usually ones of shared experiences and when those shared interests or situations fade so does the relationship but it can be revived as situations change if you wish , but not like the way it was. I ask myself if I even know what what the situation is that dominates my old friends lives and sadly come to the conclusion that I do not and the realization that it is my fault .

WE are only humans, mortal little things weak and much dependant on the grace of that which is stronger. Thanks Park_Bear for going deep on that one .

"and you have their shoes "hahahahhahahahhha

jeeves19 profile image
jeeves19 in reply toGymsack

Gymsack. I’d like to share my personal opinion on something. It seems to me: 10 years ago when I started coming onto this site, you were like a bear with a sore head, roaming around making some fairly blunt remarks here and there. You came across - to me anyway - as a no-nonsense guy who told things like they were and didn’t pull any punches. But you seem to have changed over the years and dare I say, have gained elements of empathy, sensitivity and wisdom that I didn’t notice earlier. 🤔. You stated recently how lousy you felt at the 20 year mark. That maybe so but whilst your body is breaking up and letting you down, your soul seems to be rising to the occasion.

Gymsack profile image
Gymsack in reply tojeeves19

We change, but still hold on to some things

A phrase that goes through my mind a lot more lately as I look around:

"There but for the grace of God go I"

There comes a time, when we have to face cold reality and yet still be happy and make those around us happy . Kermit the Frog said " Its not easy being green "

LeharLover62 profile image
LeharLover62

Same here. But it always ‘hurts’ more when you’re a bit depressed and need your friends the most and they just don’t want to engage in meaningful conversation at all.

The other hard thing is that it’s very difficult for hubby to leave the house some times, so I try to have people come by here for dinner or to just check in….but most people only want to see us if we go out somewhere.

Hang in there and take what you can from friends! They will help sometimes and be better than no friends. And maybe one or two will help you through the worst of it (we have one we can count on).

jeeves19 profile image
jeeves19 in reply toLeharLover62

Thanks very much 👍

tandolino profile image
tandolino

I completely understand your situation. except that It is my wife who is the social butterfly And I am more content being alone. My wife has suffered more socially because I prefer isolation. I certainly push myself to go out and be with my wife and I've also encouraged her to connect with friends and I don't want anybody to suffer because of me.

But I want you to know that I appreciate your posts and your honesty and you have helped me a lot. I don't think that dbs is Going to be an option for me. I was hopeful that the gloves would be the vibrating gloves would be something that would help but that doesn't look like that's going to pan out in time for me. Thanks again, look forward to seeing more from you!

jeeves19 profile image
jeeves19 in reply totandolino

Thanks. Your encouragement is appreciated and valued.

kaypeeoh profile image
kaypeeoh

It's not 'Either Or'. It's both. I tell my stories to the doctors and nurses. They make perfunctory responses but then at least mentally they're off to the next patient..

I don't think it's so much that I have a disease.

Instead it's that everyone is busy and everyone has only so much energy to impart with each connection. Instead it's just that I'm old and just a 'dodder' taking up space in a crowded world. Face it dude; You're old.

Appreciate that they have two minutes for you but not 20 minutes. I used to go to the gym and be annoyed by old guys sitting on benches and not using the equipment. Instead they told stories about their past. One guy has been #2 his class in they army and had wrestled all through the war. Another guy had built a pole barn and talked about getting centimeters and inches confused.

We old guys want to tell our stories even though nobody much cares to hear them. Not much more to be said. Find some grandkids. They'll listen.

Write a biography. Nobody will read it but it'll be something to pass time till that metaphoric bus slams into you.

jeeves19 profile image
jeeves19 in reply tokaypeeoh

Cheers Kaypeech. Worthwhile contribution. 😊

Bluebell2022 profile image
Bluebell2022

where in the UK do you live Jeeves19?

jeeves19 profile image
jeeves19 in reply toBluebell2022

Sutton Coldfield. 😊

Bluebell2022 profile image
Bluebell2022 in reply tojeeves19

Ah Birmingham, I live in Harrow, NW London. We lived in Edgbaston from 1995 -2000. If you are ever coming down this way let me know!

jeeves19 profile image
jeeves19 in reply toBluebell2022

Thanks 🙏

pearlette profile image
pearlette

I sort of have a similar tale.

I have more or less been single most of my adult life with serial monogamous relationships every 7 or 8 years. Have also had a strong career woman personality , mistaken for an extrovert when I am actually an introvert. I enjoyed my time alone

But allthrough my life , probably since boarding school (primary) I was everyody's chief advisor. The people who were 4 years older than me used to come to me for solutions, organising protests. That continued into university and med school.

In medical school I fell ill and got separated from year playing catch up with repeat term exams etc , Yet I was the solution finder. It continued when I moved to this country.

When I started decompensating with the PD disability prior to treatment, I had an exodus of friends who just did not know what to say to me. I was the pillar of support. They did not know how to be on the other side. A few old friends widely scattered around the globe are still in touch. Others I have pushed away because they just dont make the effort to understand.

But I have made a few new friends. Probably can rely only on 1 or 2 of them for emergency help. Two years ago an ex colleague and I started dating but it has soured and died out recently. Nice caring guy but emotionally unavailable !

It has needed a rethinking of direction but the practicalities of being an only child of an only child are that I am an Indian woman with adequate assets that I will eventually inherit from my nonagerian mother.

The last 11 months have been difficult due to right flank dystonia. Relentless chronic pain for atleast 18 hours of the day.

But work gives me a reason to get up in the morning and struggle out. I get respect, I get gratitude and a lot of good will from colleagues and patients.

But even that comes at a price. About 45% pf my patients have undergone a lot of trauma as children or as teenagers. I try not to carry it in my head but its not always easy to shut it out fully

When I was a critical care physican there was more power to sometimes make a difference . The mending of some diseases was easier. With disturbed minds the "fix" is unpredictable. Sharing with friends does not help.

I am often too tired to enjoy my old cultural pursuits. Travelling has lost its charm. Cant sit through an opera / concert. Seating which you sink into is uncomfortable. Then there are the unpredictable peak dyskinesias. It does not help that the rest of the time I have a erect straight neck and pass for a 45 year old instead of a 62 year old.

Sometimes it seems surreal that I have gone back to being the nerdy 11 year old who usually was curled up with a book.

Then I remember that I am lucky I can still see and that I have a fairly sharp brain.

Gymsack profile image
Gymsack in reply topearlette

Pearlette , just a comment from a passing observer. You seem to have a good understanding of yourself and I think that is an ability more often seen in India than in North America and that you may not understand and may misread people who are not as tuned to their own strengths and foibles .

I remember in school commenting to the teacher that we should be playing football instead of learning the rudiments of golf during physical education class. His response : As you will get older the ability and the opportunity to play foot ball will diminish and you will find golf to be suitable exercise and recreation for many ,many years and you will wish that you had become good at it.

You are relying on work as a reason to get up in the morning and for human contact but as the PD progresses you will find that the stress created by that work can not be tolerated by your PD . I suggest that you start to lay the ground work for the next phase which may be a return to your old cultural pursuits and volunteering in other words retirement. You can always take a fold up chair or talk to someone at the theatre to arrange a suitable spot near the exit.

just thought I would mention

be happy

pearlette profile image
pearlette in reply toGymsack

Thank you for your honesty Gymsack. Appreciate the thoughts behind it.

Trust me you might have got the wrong end of the story . Yes my circle of friends has shrunk. I still have a lot of time for a lot of my interests . I have embraced being single again .

I have had painful dystonias for several years but a minor gym injury 10 months ago has taken a while to settle as the dystonia gremlin cannot resist an injured tendon.

I hate travelling in cars , smaller aircraft, but love walking in the English countryside. But some venues are not much fun. The Royal Opera House in London is not the kind of place where a folded seat would be practical . Nor could I carry it.

I work on my own terms. I take 4 to 6 weeks off after every 3 months of work. I did not join the rat race at any point in my career. I must be the only foreign medical graduate in Britain who took 4 long sabbatical years between 25 and 55. The nature of my work is that there will always be some angst but it is rewarding too.

I spend on self care and home help who are like extended family.

I have tried retirement twice in the last 8 years (serendipitously I happened to travel to India in 2020 just before the Covid pandemic engulfed the world so I had a lovely 10 months in a very non threatening environment in southern India.

I am still enjoying being 62 going on 45 but I will make sure I dont burn the candle from both ends :)

Gymsack profile image
Gymsack in reply topearlette

aahhh much better

Be happy

Awyn profile image
Awyn

It has been a while since I've posted or commented here in HU. I just read your message and it shot straight to the heart.

Like others on HU, I follow your story and PD developments. I frequently share your experience, realities, creativity, wit, and wisdom with my husband and son-in-love, both stricken and struggling with PD to different degrees. Yes, I confess that I have been ghosting you, notably as you've chronicled your DBS journey, and although I may not always press the heart on one of your posts or add a comment, please know we are listening. Your wife is right. We are "hit".

As others have commented, so many of us are consumed with life, trying to keep our balance while on this wild ride. Snapshot: my husband, who has PD and Leukemia, has gone through multiple procedures and surgeries in recent months...successfully (Woot!), and just as he's coming out of the woods, our son-in-love, whose PD story parallels yours (he suffers with crippling dystonia, dyskinesia, is a young father, creative person with no local PD support group he can relate to), is scheduled for DBS surgery... next Wednesday.

Our family, across several states, has been woven into his preparations, helping with research, navigating insurance, self-employed loss of income realities, our daughter/wifey preparing to take leave from work to help him through, getting our house ready for their toddler, our sweet granddaughter to live with my husband and me those first two weeks, organizing meal trains, and the unexpected and an incredible outpouring of support coming from his fan base (he's a horror movie director and while the public response has been emotionally strengthening and uplifting, it's been a wee bit overwhelming this past week). With out of town family about to decend on us, we are in "all hands on deck" mode.

Although it can feel isolating or overwhelming at times, we hold on with quiet confidence to a shared belief that our friends and family know we love them and that although we may not in a given moment know the details of what they are going through and visa versa, we are with each other in heart, mind, and spirit. We know that should we ask, they will try to come to our aid in times of great need. And we will do the same for them; even amidst this rollercoaster ride, we never seem to be able to exit.

Please forgive my lack of responses to yours and the contributions of so many incredible sharings others have made over the past several months (and for the foreseeable future) as we've had to step out in tunnel vision for sanity and survival. It does not mean we aren't listening or don't care.

I hadn't intended to pop into HU today. Your message, along with everyone's comments, is profoundly moving. Thank you, Adam et-al. I needed this today.

jeeves19 profile image
jeeves19 in reply toAwyn

Thank YOU Awyn for sharing those lovely thoughts about your circumstances and family and for saying such kind things. I’m so glad that this post has enriched your outlook and day to day battle with this awful disease. Blessings. 😀

BigTexan profile image
BigTexan

Hey there Adam, This has turned into a great post. I have been off for a while. I wanted to send some positive vibes to you and everyone who needs it. Also I am going to play some music tonight so cross your fingers that my tremors don't get in the way of making chords because then I forget words and it gets embarrassing. If someone takes pics I will share later. Wish you could bring your Telecaster and pick with me. Peace to you and everyone that is affected by PD.

jeeves19 profile image
jeeves19 in reply toBigTexan

That’s great BT. Play some Danny GATTON for me eh?

BigTexan profile image
BigTexan

No Danny G. but I did some originals and a Georgia Satellites tune.

jeeves19 profile image
jeeves19 in reply toBigTexan

Thinking about it, Danny would be hard to emulate!

Squarepusher profile image
Squarepusher

I have experienced the same from friends/family. Here is how I think about it: our ancestors - here I am talking other non-human primates, but I think this goes back before primates - they would, from an evolutionary perspective - try to get away from another member of the tribe/group when it was sick. Because sickness is weakness, and predators know one thing for sure - they can go for the kill when they see weakness. Why would you want stick near a sick animal (sorry for the crude language) if you were caring for small infants - for example. The predators who comes to kill the sick will soon go after those around him/her/it.

So I think at a pre-verbal level - at some sort of ancestral archetypal level, I think we are oriented to get away from the sick - to avoid the eventual carnage. I think this instinct is deep, and pre-verbal and I forgive all my friends who don't stay in touch. It must be very hard for them to explain to themselves why they do this - I don't think they even experience this impulse to flee as a conscious decision or weight, it is buried and deep rooted in our evolution.

I also think when my friends hang around me this will probably trigger feelings of their own mortality, and there is lots of research that people avoid this.

Am I right or wrong. I have no idea. But I forgive everyone who succumbs to this ancestral baggage. And it really is baggage, because rationally there is no danger to them when hanging around me or you.

Like I said, I have no idea if this is right or wrong, but it makes sense to me. This thing we call "I" is not the decider.

jeeves19 profile image
jeeves19 in reply toSquarepusher

Yeah. Makes sense to me. Nice post. Thanks for it.

Squarepusher profile image
Squarepusher in reply tojeeves19

Here is another idea I'm not sure about, just bouncing around in my head. When we announce bad news to others, they say "life is unfair, life is cruel, so sad it happened to you..." - that sort of sentiment - but they really don't believe it. They really don't believe that through the random selection you ended up on the left tail of statistical probability function. I think what people secretly do is a ritual "he/she must have held their cell phone close to their head, lived near high voltage power lines, ate food that wasn't organic, etc ,etc" they will imagine you (or I) did something they would never do. If they are from the east they might imagine that you had bad karma in your last life. And then they tell themselves the story that they don't do those things: they exercise 5 days a week, they take their fish oil, etc. They play this stupid ritual in their head because it is really hard to accept that suffering is random and that it could happen to everyone.

I'm no different. What goes on in my head when I see a homeless person. That it could have been me? No, I'm sure deep in my head there is a story going on about how I invest my money well, not interested in addictive drugs, etc. I would never end up on the street.

It is really hard to walk past a homeless person and think "that could easily be me". Drive by a car wreck and think "that could be me". I mean now I can, with pd - I have those thoughts all the time.

I don't think people have much capability to digest that suffering is random and meaningless. That a holocaust happens - and that's it, it just happened. God did not do it as part of some bigger more meaningful picture

jeeves19 profile image
jeeves19 in reply toSquarepusher

I like posts like this: speculative, analytical, attempting to pull apart the mind from the soul. I think peoples souls are generally passive compared to the domination of mind for virtually our whole lives. I hope, on my last day, that the soul asserts itself and demonstrates who’s boss!

Squarepusher profile image
Squarepusher in reply tojeeves19

Well put!

WinnieThePoo profile image
WinnieThePoo

Woof that's too much to read. Be the person you are, not the disease you are forced to cope with. The answer, like the genie is often to be found in the bottle, so we need to find a pub., where we can chew the fat properly. Preferably not Ansells or M&B.. Cherish the friends you have, warts and all. A bientot hopefully

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