Post by MPN-MATE Admin » Fri Jul 17, 2020 1:17 pm
Hey guys... 
The Title of this topic I am finding one worthy of a stimulating discussion that I hope a few of you might join in in offer up your own ideas and wisdom on the subject...
The Title is of an Essay recently completed by a party in the USA:
"When Iʼm 84: What Should Life Look Like in Old Age?"
by Lewis A. Lipsitz MD ( Geriatrician)
mpn-mate.com/forum/viewtopi...
Looking forward to your thoughts & comments...
Steve
Hi Steve
For me it’s things like being financially secure
Access to a good health system. Advances in medicine and treatments for MPNs hopefully
Mobility - hope l can still climb stairs - no lift in my building
A society that values older people and includes them - l know a 74 year old who still goes clubbing regularly and why not!
Friends of ‘all ages’ and family,not being isolated
Support systems- if needed. Free access to new technologies to enable this ie Zoom social media etc
Range of care options if needed
Self determination- managing decisions about myself
Being as fit as l can be - access to sports a social life
Free public transport options-
Probably most important not giving up on myself
Hey Doveme... 
Thanks for your reply...
Yes, remaining independent is a critical wish for most I am sure...
Being able to climb the stairs is a biggy too...
As are a few other things you've mentioned above...
But the thing that really stands out to me is when you said:
"Probably most important not giving up on myself..."
I believe that we are perhaps more likely to feel this way when we feel that we are no longer contributing to society and our immediate communities, in whatever we we can...
That is a big issue for me personally... And one of the main reasons why I am so happy to be trying to add to finding answers to questions about MPNs etc...
But anything we do, I believe we need to feel some passion for doing so...
Stay safe & well... 8D
Steve
Having only a few years to go until I reach 84, I feel I can only comment on my own experience.
I am fortunate in the fact that although I have ET, I have a comfortable home, a good partner and enough of a pension to live on reasonably comfortably. The medical care here is good ( Australia), in comparison with many countries.
My main fear is becoming infirm either in body or mind and becoming a burden on my partner or family. These are not my only fears as loneliness is another problem which can rear it’s ugly head, if one becomes immobile.
I agree with Doveme that self determination and not giving up on oneself are a key factor in facing old age head on.
I have certainly slowed my pace down over the years but do not beat myself up about it anymore. Peace of mind and keeping the joints supple are now my main priority. As I have already said, I am lucky to have most other things in place at this moment in time but appreciate it is not the case for everyone approaching 84.
Katie
Hey Katie...
Thanks for your input...
Hope you and yours are all safe & well
Best wishes
Steve
ox
Hi Katie ,I am with you all he way!
I'm no chicken either,but in actual fact my basic life style has changed little,hubby and I are in France rather than UK many years now.
Still live in huge old 'maison de maitre',land ,horses dogs....I still work as sculptor / artist as in youthful days,hubby does most of the hard work as P V does knock me out most days at some point.....but it's definitely better to keep interested in normal life,try to forget the ghastly P V and keep going.Must admit my consultant thinks I am a crazy English woman tho we have had a long good relationship and lots of laughs over language...I don't feel old ,I don't look old,well not really old!!!The breeding of competition horses is the only thing we have stopped doing,our daughter in U K continues our blood lines.
So Best to you ,age is a number,not a reason to give up.
By the way. Great health care here in France too,so we are lucky.
Keep well and positive as you are.Sally
Thanks Sally... 
Sounds to me that you guys are living the dream... (apart from PV etc)
Still, sounds wonderful to me...
Best wishes
Steve
ox
Well ,yes....me and himself have the occasional spat but we have, ever since our 50 yrs ago marriage......keeps the spark going!!!
We do miss some things in U K ,daughter obviously,our other horses and gorgeous stallion,we go back usually at least once a year,drive up from south to northern ferry ports ,take the dogs and usually I exhibit...not this Covid year tho....I did find chat by the way ,but it disappeared again!!Think my i pad is feeling it's age.
Keep safe Steve,keep us oldies well informed! Sally
Congrat's to you both ...
50 yrs is quite a milestone, and even more so these days...
Stay safe & well Sally...
Steve
Thanks for your lovely upbeat reply Sally. There seem to be a few of us oldies travelling the MPN route. Let’s hope we are all survivers and go on happily supporting each other.
Best wishes
Katie
Hi Inca, like you it's having the life you love around you that makes you feel young. We have our own farm, so horses, dogs have been my daily routine. They need feeding, mucking out and love and don't allow time for to much self analysing. Walking through our fields with the dogs with just the silence only interrupted by the birds is truly my sanity.
Absolutely elliebongo,horses and dogs are essential for sanity! The worst thing is losing them as sadly dogs have a short life compared to ours.Never forgotten even tho the only way to control grief is another puppy.We always have two G S Ds older and younger at the same time,others too terriers ,lurchers...... My last home bred horses are 30 yrs old and 34 yrs old.Both Champion competition horses,the 30 yr old is a top Stallion ,so we can look forward to hopefully seeing his progeny when things get going againHe is in U K with our daughter,the other is with me in France ,We lost her sister last year
at 34 yrs old.....you can imagine the sorrow that was.But the great times had with all of them over the years gives me happy memories
when the P V gets me down.You enjoy yours now,they are very special life savers! Very Best to you Sally.
I hope not to follow previous generations and become a grumpy stubborn old woman but time will tell.
I hope I still have passion for life.
I’m at the stage of thinking when I might retire. Lockdown has changed this idea, as I miss the company of my work colleagues. Finances are complicated as none of us know how long our pension has to last.
Hey Eleanor...
My mum is 84, and I find can be grumpy and a tad unreasonable at times... But otherwise she is still our grand old matriarch, and is very well loved... Even if a tad dotty... 
Staying as busy as possible really works for me... But fatigue is always a factor w/ me too...
Whereas it never used to be...
Best wishes, stay safe...
Steve
"Shake of this mortal coil"? Brush up your Shakespeare! (Cole Porter) It's "Shuffled off this mortal coil" 😬
My father lived into his 98th year and my mother into her 94th - both largely fit in mind and body up until shortly before their demise - so from an inherited genetics point of view I've got a chance of achieving my ton not out.
I live alone and am used to and largely comfortable with my own company and I suspect this has made the current situation easier for me to deal with than most.
Having said that, social contact is important, as is a certain amount of support from family and friends.
So, as most seem to agree, staying mobile, staying compos mentis and not running out of cash are my hopes for getting older. I have no absolute control over any of these though!
Andy (growing old as disgracefully as I can get away with)
Hey Andy... :-0)
Definitely sounds as if your longevity is in the genes... and a 'Not Out' ton is on the cards...
My dad passed away three days before his 87th, (Being a cricket tragic myself), I suggested he just needed to see off the 87th and he would make his ton... But he wasn't having any...
He survived three (3) remissions of Non Hodgkins Lymphoma (NHL), but then after a 2nd hip operation, he suffered a fall, and never really recovered again.
Dad stayed pretty fit and healthy still attending his local gym before his hospitalisation etc... He was sadly extremely stubborn all the same... Refused to stay in hospital for remediation after both his hip ops. etc.
Stay safe & well... and thanks for your input...
Best wishes
Steve
Your Dad and mine were obviously cast in the same mould.
My dad died because he wanted to - at peace with himself.
And my best to you and yours.
Andy
I am 84 and apart from ET developing in 2018 at virtually the same time as breast cancer ( for which I received surgery and radiotherapy) I am leading a fairly active life, what I would have wished for in earlier years had someone asked me.
I go for walks, not too long, am active in our Church on sidesperson's and coffee morning Rotas have a loving husband and close family. I don't think my life has been restricted too much due to age. Only the blips that happen sometimes because of ET and medication.
We live at the coast in a pleasant friendly village .So all in all I think my life at 84 is what I would have hoped for, apart from the ET of course.Best wishes, Fran
Thanks Fran...
Contentment is a most wonderful thing to achieve, may we all find it in our life times...
Best wishes
Steve
It is an interesting conversation for those of us with MPNs. Many of us will live near-normal to normal lifespans (about age 76 for an American male). For myself, I do not worry about lifespan at all. My focus is on maintaining the quality of my life. All of my care is geared towards this goal. If I can can also extend lifespan by maintaining QoL - then all the better.
I am aware of what the longevity research indicates for someone in my risk band with PV. Have also used the MPN Risk Calculator for someone with PV + NF1. The truth is that these are just statistical probability statements that have little to do with my actual prognosis. I do not view any of this as though there is a MPN-timer clicking away in my body. Many things could happen in the next 10 years for better or worse. Who knows, perhaps there will be something curative in my lifetime.
The simple truth is that I do not fear death. As a person of faith, I know something better awaits me. I am not, however, ready to shuffle off this mortal coil just yet. I still have a good quality of life and plenty to enjoy in this world. I have many people who I love, things I love to do, and experiences I have not yet had. My vision of aging from this point on is to be able to actively engage life in the fullest way possible until I can no longer do that. I plan to make that last as long as possible. When this is no longer possible, I can accept death as the transition into a new existence. Until that happens - life is meant to be lived and I plan to live it. Whether that is to age 74 or 84 - only time will tell. So long as I can maintain the life I want, will be hoping for longer rather than shorter.
Hey Hunter...
I would not be surprised at all if its 104 w/ your incredibly buoyant attitude... You've summed up all of that so well as always...
Best wishes buddy...
Steve
You just lifted the fog from my spirit. Thank you!
Hi Steve,
I would like the things you and our other friends
mentioned like being physically and mentally fit,
being able to contribute to society via volunteering, having a strong bond with every member of my family and friends. But I also hope I will be able to continue to grow spiritually and to be able to love myself and feel very comfortable being me. It is a journey that excites me. 😊
1 year to go, in a nutshell independence physically, mentally and socially is that asking too much? maybe I should add improving on my responses.
I was diagnosed 19 months ago with ET and following bone marrow test myelofibrosis ,the team managing my care In the UK have a difference of opinion as to whether I have the primary or secondary form. My age I .believe adds another risk factor.
I am in awe at the knowledge displayed and shared on this site and am so grateful for all the information shared
Margaret
Hey there Margaret...
Lovely to be making your virtual acquaintance too...
I suppose one of my main reasons for having asked this question, (after finding the attached copy of the essay that piqued my curiosity), was because of my aged and now mainly immobile mother. Mum was never a sporting person, and never really did anything to take care of her own health, although I must hasten to add that she was always bus doing something...
Me, on the other hand? I was and have always played some type of sport throughout my life, and now I am also into road cycling long distances these days. I am aware of the wonderful freedom I experience on many of these rides, the scenic vistas and beautiful places I am able to witness and frequent in my own back yard, so to speak...
Hopefully, I might continue to be doing so well into my eighties which unfortunately, my dear mother could not, even if she wanted to...
Stay happy, safe & well...
Best wishes
Steve
Hi Steve
I think lifestyle has a lot to do with the aging process however,I have a brother in Canada, Wheelchair bound who breaks every healthy living rule and seems to be surviving against all odds.
I think a few genes from our dad has something to do with it, he survived until 96 and it was only hip surgery complications that ended his life. I am also amazed at all these centurions appearing in the news recently.
I have had a moderately active life and boast to date have only one knee replacement and with a glass half full I look forward to each day, remembering “The Darkling Thrush”
I have a lot to learn from this blood condition having been diagnosed exactly 2 years ago and take note of your contribution and your interaction with Hunter.
I am a very erratic participant in in this support network but value it highly .
Very best wishes
Margaret
I’m
Hey there Margaret...
Thanks again for your reply... Yes, we are all just a tad different I suppose, and yet in many respects we are also so very much the same...
Fear not too much the frail song of the Darkling Thrush... although, it is wise I believe to note that our world has changed and altered once more again...
Change, in my view, is the one true constant of life... To change is to survive, where to be the contrary might also prove one's misfortune...
BTW, there are no rules about how often one might choose to participate in the Forum... Lovely to hear from you all the same...
Best wishes, stay safe & well...
Steve
Ps did you spot my accidental spelling mistake of centenarium, I think it’s a longtime since we’ve had centurions!
Margaret
No... didn't see that at all...
I am sure that we will see many more in the 100 club before this pandemic has moved on...
Best wishes Margaret
Steve
Hi, Steve,
I’m finally getting around to responding to your post. I guess I have a different perspective on living a long life. My dad died at 87 but he started to develop dementia when he was about 80. It was heartbreaking because he forgot his whole family except for my mother. He was a brilliant doctor and to see him deteriorate physically and mentally was very hard on me. My mother had brain surgery in her 40s and then again when she was 72, due to a meningioma. She was also in a terrible car accident in her late 40’s. (She was not driving) She is 86 years old now but she has been in a wheelchair for years and has to have an aide do everything for her, and has a terrible time communicating with people because of speech problems due to the brain surgeries. So living a long time to me is not as important as living a quality life now. And now that I have Myelofibrosis, my outlook is to do everything I can to improve my quality of life, but just to live a long life is not the goal. I hope that makes sense.
All the best,
Cindy
Hey Cindy...
Thanks for your response too...
And yes, it makes perfect sense to me... I hope to emulate those sentiments myself...
Stay safe & well... best wishes
Steve
Christmas message 2019 from the team at MPN Voice
