Want to help my dad: My dad has had essential... - MPN Voice

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Want to help my dad

Pgm1987
Pgm1987

My dad has had essential thrombocythemia jak 2 positive for a year. He used to work and be fairly active, but this seems to be getting the better of him and he's always fatigued and it's getting him down. How can I help him start finding some enjoyment out of life again? Is there a fitness, diet or hobby I can help him with? Any ideas would be greatly appreciated.

19 Replies
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You remind me of my son. Bless you. I wish I could tell you the answer. My son stays in touch more. It helps.

Pgm1987
Pgm1987
in reply to CalrType1

Thanks for reply, I will indeed stay in touch and see him more. Do you manage to keep yourself active at all?

CalrType1
CalrType1
in reply to Pgm1987

Well I used to run. Not any more. Getting through working at desk is my priority. I look forward to things, not depressed. Going to movies and out to eat regularly with wife and our twins adult special Olympics athletes. Camp in summer and fish. But I sit when I get home from work and in bed before 9pm. Do stuff on weekend until energy is gone. Hope that helps. Oh, I turn 60 today. Old guy at work. Take care and good job young man!

Pgm1987
Pgm1987
in reply to CalrType1

Thanks again for reply. It gives me a better insight to what is feasible to help him. Happy birthday, and merry Christmas to you and your family. Thanks again.

It's great that you want to help your dad. I thinks its all about budgeting your energy as there isn't too much of it about when you have ET - Work out whats important to him and what he can let go and not do. Positive mind comes before positive body, so see what you can do to support him / make him happy, when he is a bit more positive them introduce the exercise, it is very important but the motivation tanks are usually a bit empty for the first year or so. For people going through this horrible illness, its a bit like a bereavement and like bereavement its a journey that you have you make and it takes time. Mind wise it takes time to adjust to not only what you have & what you may get later, so it can feel like your not feeling too well and walking across a mine field. Once you adjust to that you start realising life will get better, meds are getting better & the future isn't as grim as you first think. I wish you all the best - Raff

Pgm1987
Pgm1987
in reply to Raphael_UK

Thanks very much for reply. Very interesting and informative. Wish you well.

Hi Pgm.

I think the fact you are obviously a caring person and want to help Dad have a better quality of life is wonderful . Just to let him know you care is the most important thing. He will learn how much he can do on a daily basis, I'm afraid it's a balancing thing. We want to do what we have always done , but our body lets us know we have to compromise. Life can still be very good just a bit slower . Exercise is good , but not over exert himself. Rest when he needs to. We all understand this fatigue, but we learn what we can and cannot do.

I hope you and your family have a good Christmas , and happy new year.

With best wishes Sandy.

Pgm1987
Pgm1987
in reply to Stevesmum42

Many thanks sandy, kind words much appreciated. I will take the advice from all who replied and put some ideas into practice and fingers crossed me dad will have a better year in 2019. Again many thanks. Happy and healthy Christmas wishes to you and your family.

Hi. I’ll pass on what I’ve been told by others here. Eat a healthy diet with lots of fruits and vegetables. Drink 2 liters of liquid daily. (This is considered extremely important.). I drink it as un-caffeinated liquids. Many try & eat diets designed to reduce inflammation. Try & walk daily even if slightly tired but not if exhausted. I was told to avoid alcohol, others weren’t. I recently read that weight lifting helps to build endurance. And he should be certain to get plenty of sleep & consider a nap each day. I think if you can get him to post on here it will be really good for him mentally. He can ask questions, ask for support when he’s having a tough time, etc. And Maz, the administrator, can link him up with a buddy. Keeping active socially is good. If he lives alone, a low maintenance pet could be great company. Some of us find medication for anxiety or depression as well as talk therapy to be helpful. Last, he should be certain to have a good specialist & he should discuss his condition. I know my doctor said if my fatigue gets bad he’ll probably want to change my meds. Thanks for reaching out to us on behalf of your Dad. He’s lucky to have you. Feel free to write anytime. Katie

Pgm1987
Pgm1987
in reply to katiewalsh

Many thanks Katie, very helpful insight. My dad's quite a proud bloke but I will try and nudge him to sign up on here. Think it will do him world of good. You all seem a good positive bunch. Wish you well with your health and merry Christmas.

Hi PGM,

First of all, you found the right place to come for support - I have found this forum incredibly helpful, so if you can get your Dad to sign up he will be in the company of people who really know what it is to have this disease.

I'm probably quite similar to your Dad. i'm 69 and was diagnosed with ET via a routine blood test about 18 months ago. I take hydroxycarbamide for the ET. Most of us suffer with fatigue, and (in my case at least) it took a long time for me to come to terms that I can no longer do some of the things I used to do because the energy bank is empty. But you learn to adapt, to do things in small bites rather than in one big effort. After a while you get to know how much you can do and adapt to the 'new you' - but its not easy and he will need support - because it really does impact your ego / self esteem.

One final thing, we often fall into the trap of blaming all our ills on ET and not looking elsewhere. Between September and November my fatigue really went down hill and my ability to get things done was severely curtailed - and yes I felt really down about it. My GP (God bless him) decided to do a few tests of his own and found that I had a severe shortage of vitamin D - which causes tiredness! He put me on a course of ultra high dose vitamin supplement and the transformation has been amazing. It may or may not work for your Dad, but its worth asking your GP if something else is in play.

Well done for supporting your Dad - we Dads need it :o) - and I hope he will engage with our community here.

All the best

John

Pgm1987
Pgm1987
in reply to Ovingite

Many thanks john, very helpful insight. My dad's quite a proud bloke but I will try and nudge him to sign up on here. Think it will do him world of good. You all seem a good positive bunch. Definitely going to look into the vitamin d. Wish you well with your health and merry Christmas.

Good morning, you special person. I was diagnosed this year with ET and JAK2+. the fatigue is so debilitating.

I find that brisk a walk first thing in the morning helps a great deal. My dog helps me a great with that. We have a 'no dawdling' walk at high speed! Whether I feel like it or not, it has to be done first thing or I slip into worse fatigue.

Eating a low inflammatory diet is definitely beneficial. It works against the aches and pains as well as the fatigue.

Supplements I take are CoEnzymeQ10 & Vit E, (I get this from Natures Best because it's top quality) Better You Sublingual D3, Sublingual Vit. B complex (Pure) and a sublingual B12 spray (Better You). They work for me!

Last but definitely not least, if you can get him to practice yoga, however small but daily, he will feel the benefit immediately.

I hope this helps. All the very best now and all the rest......x

Hi, my hubby has ET Jak2+ & isn't on any of the community pages so he gets support via me from the groups, he rolled his eyes when I first suggested cutting out caffeine to help his fatigue & although it's not made a life changing difference it does help, he openly admits he feels the effects of caffeine if he does have any, many reach for it to boost them when they are fatigued but it actually have the opposite effect. He now always orders uncaffinated everything & for someone who wouldn't draw attention to himself the fact he does proves he feels it helps him. He also paces himself, so if he has a big event coming up he doesn't over do it for a few days before & after. It's about listening to his body, if he needs to rest he should, not always ideal all the time. Trying to have a good nighttime sleep routine so he can have the best sleep to start the day as energised as possible. Well done for asking the questions to help, Merry Christmas x

Hi, we all get fatigued and it is very annoying not being able to do things you used to take for granted! Does he like animals? Rescue kennels are always wanting people to take their dogs little walks, that would get him out of the house and mixing with other people and take his mind off the ET.

Best wishes

Lizzie

Raphael uk has given you a fab answer. I echo that post completely. Your dad is really luck to have someone who cares so much.

Hello from me...you seem to have been given such excellent advice by so many, hesitate to add any more. I have ET Jak 2 positive, like your Dad.

Discovered the best thing is walking and walking and walking! And when feel too much of an effort, still walk,

and always helps. Guess the exercise and the fresh air help. Also drinking lots of water. Wise to have those extra vitamins, especially Vit D and Vit C.

Wish you and your Dad a specially happy Christmas and a 'as healthy as possible' 2019. Tinkerbell

Many thanks for your wise advice and thank all of you for the support if I can get him on here I'm sure it will cheer him up. Merry Christmas and good health to you and all your families.

Hi - one thing that many people don’t consider doing is joining a choir. The health benefits of singing (especially in a group) are well documented. I find that the singing energises me, makes me very happy, and has definitely improved my social life. Here is a link to an article about all the health benefits. (There are many articles on-line, this was just the first I found).

takelessons.com/live/singin...

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