Can we honestly give hope?

[pegleg]

I have a friend who is having a difficult time finding hope in his future. We have been having discussions about all of the novel therapies in trials now and those to be launched in the near future. He is a Vietnam veteran exposed to Agent Orange, but is convinced that his PD is a result of a beating several years ago that nearly killed him. There was a lot of head trauma.

My friend says he needs to know now if his neurons have been destroyed from the beating, if there is hope for him. He says even if something is discovered today, he won't live to see the therapy because of our slow approval system. He has even been suicidal. He is 65 and lives alone.

What would you tell my friend? I have told him about gene therapy, exercise, intestinal gel (Duodopa and others), and down the road treatments of the future. He doesn't think that we have any chance of restorative therapy.

What can I say to give him hope? I don't need long difficult-to-read answers - just clearstatements. Thanks
Peg

[moondaughter]

Originally Posted by pegleg

I have a friend who is having a difficult time finding hope in his future. We have been having discussions about all of the novel therapies in trials now and those to be launched in the near future. He is a Vietnam veteran exposed to Agent Orange, but is convinced that his PD is a result of a beating several years ago that nearly killed him. There was a lot of head trauma.

My friend says he needs to know now if his neurons have been destroyed from the beating, if there is hope for him. He says even if something is discovered today, he won't live to see the therapy because of our slow approval system. He has even been suicidal. He is 65 and lives alone.

What would you tell my friend? I have told him about gene therapy, exercise, intestinal gel (Duodopa and others), and down the road treatments of the future. He doesn't think that we have any chance of restorative therapy.

What can I say to give him hope? I don't need long difficult-to-read answers - just clearstatements. Thanks
Peg

Hope is a choice he can make if he decides to. Help him fiind a good counselor or support system.

kind regards

[Ronhutton]

Hi Peg, hope you are keeping a bit better than I am at present!

Tell your friend that most people have a distraction which makes enjoying yourself more difficult. (Notice I did not say impossible!!).
For example you may be pitifully poor, and lack nutrition, secure housing
entertainment etc. You may be basttling cancer, or any one of a number of serious diseases. You might be getting used to no right leg after a spell in Afganistan.
You could go on making up dozens more such situations, until your friend finally sees hiss suffering is not unique, indeed there are many worse situtions.
Then point out it is up to him to manage his own life, you only get one. See if he can find a hobby or find how he can help others, to make good use of the life he has left. See my defunct silverware hobby. I visit the PD research team in London every 2 months. I help where I can, but it is very interesting. Get him to recognise that everyone has some misfortune to navigate through. Some a bit worse than others.
The trick is not to waste your remainlng years whining. Do something which is useful, and keeps him happy

Best wishes
Ron

[lurkingforacure]

Ron is right. I may sound cruel, and I don't mean to be, but it sort of sounds like your friend is looking for someone else to give him a reason to live. Life doesn't work that way.

Everyone has difficult issues to address, and most everyone thinks that their suffering is harder that most others' suffering. But if we take the time to put things in perspective, we can see that this is not so.

PD is horrendous, no one would argue differently in good faith. But personally, I would take PD over ALS. I would take PD over having a disabled child who would never be able to live independently. I would take PD over many other things, things that a lot of people cope every day.

We have to look inside ourselves and make peace there. It's not easy, and perhaps a counselor with experience in coping with chronic illness might help him find his way.

[lindylanka]

I'd tell him what Jaye said to me all those years ago when I first posted on Braintalk, "Have a good attitude to your PD".

When I have been down, miserable, fed up and frustrated with PD/doctors/medications/myself/etc. those are the words that have lifted me.

We can look for causes all we like. Our job is getting on with living.

[imark3000]

You raise a central question while trying to help your friend.
I would tell him that many many millions of "healthy" people are living in utter misery and thousands of them commit suicide every day. Research has proved that incredibly, happiness is not correlated to health, money or age but it is an attitude and will to be happy under all circumstances.
We all need to learn to find peace and happiness in a creative way. PD can be crippling and limiting but it does not necessarily prevent us from being joyful and happy. One should have self examination to determine the sources of happiness before PD in order to adapt to the new situation with PD.
I wish your friend the courage and wisdom to live well with PD.

[johnt]

There is, as I see it, a narrow dividing line between giving advice to someone who is unhappy and blaming them for their unhappiness.

Seven years into PD, I consider myself happy in spite of the Parkinson's. But, I'm lucky: I have a loving family; a form of PD that is, so far, pain-free; I don't
have any other illnesses; I'm still able to walk; I have good, free health care. If any of those things changed, would I still be happy? Who knows?

Surely, the starting point should be to respect all PwP.

I think there are very few PwP who would honestly say they are indifferent to whether a cure is found or, at the least, a breakthrough is made that reduces symptoms by, say, 50%.

It is reasonable to ask whether this will happen soon enough to affect me. My hunch, is that it probably won't. But there is always a chance, and while there is:

Dum spiro spero.

John

[Conductor71]

Originally Posted by imark3000

You raise a central question while trying to help your friend.
I would tell him that many many millions of "healthy" people are living in utter misery and thousands of them commit suicide every day. Research has proved that incredibly, happiness is not correlated to health, money or age but it is an attitude and will to be happy under all circumstances.

First and foremost, acknowledge his feelings and don't compare to other diseases. Say yes I think it sucks too. We have been dealt a crappy hand in life, but it all comes down to how you play it.

Watch "My Angel, My Hero" with him.

Try my daily exercise. At the end of the day, think of at least one thing that made him smile or laugh.

See if you can't get him to exercise a little bit every day. There is a portable motorized wheel that he can pedal by sitting on the sofa (if mobility is an issue). There are some that will take him to 6 RPM max.

BTW, what a good friend you are.