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Recently Diagnosed, and totally bummed

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Parkinson's Disease
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Posted 7/4/2014 10:18 PM (GMT 0)
I recently (last two months) was diagnosed with PD. Not following my neurologist's advice, I immediately got on the internet to find out all I could. Symptomatically I have virtually no "trembling" symptoms, all my symptoms are gait related, primarily dragging my left foot, some foot cramps spreading to ankle. I've come to the inescapable conclusion that I've got PIGD or what I term "galloping" parkinsons... as opposed to the "ambling" kind... you know "you'll live 15 years..." and die of cancer, heart disease or the usual things people die of (as my neurologist is so happy to conclude). Doctors are so focused on delivering "good outcomes"....

I, on the other hand, like to make good decisions. We're selling our house. I have limited funds.. a son who is has been diagnosed as schizophrenic. I need to make some basic "good" decisions and they are based, heavily, on practical matters. How long do I have to live? Will I be able to take my life (or "turn the switch off" ) if I wait.... before I piss my family's resources away and leave my wife and son destitute. (I come from a country that doesn't take care of families - we'd rather shoot up the world to protect our precious privileged 1%'s oil interests... the U.S.).

All this has precious little to do with PD.... except that I can't get a straight answer from my neurologist and I am sinking into depression. "Happy endings aside".... I need basic information. How long have I got?

Fundamentally those people with "galloping Parkinsons" as opposed to ambling (words chosen in contempt for physicians who I've consulted with.... are short timers. How short? What are the statistics?!!! I think its 2-6 years from significant diagnosis. And then its aspiration leading to pneumonia or fall related injuries that are the curtain call.... not usual diseases people succumb to. (Enough of "good endings" physican blather !) I think its about time the medical profession needs to start being honest with victims of this disease so they can make important decisions that effect themselves and their families and people who love them. And not leave a trail of people who are destitute. Fact is in a study from 2002 to 2008 (six years).... 64% of those studied had died... and of the remainder, 70% had dementia. Not real good odds I'd say. How do you exit the world... knowing you'll not do the most important thing to a man... more important than life itself.... protecting and caring for family? So I am sinking into depression... not for some "sub-conscious or psychological" reason... but because I'm going to leave my family with bad thoughts of me for eternity.
Posted 7/7/2014 6:31 AM (GMT 0)

Frank,

Welcome to Healing Well. Glad you found us.

 

I can't answer all your questions. I can only share my experiences. I was diagnosed in 2001 and had symptoms 2-3 years before - that's 15 years. I still work full-time and do everything I ever did... maybe with a bit of a shake or a little slower. My prorities have changed - things that seemed important like a neat and tidy house (OK, I never have had a neat and tidy house) ... are less important - time with family is important. My sense of urgency has changed - I'm doing things now that I might otherwise have done later like traveling.

 

You mention finanical issues. It is true that your earning years may be less. I'm confused about where you live, but if the US you'll want to become educated on things like disability and social security. You may want to be more conservative financially. I don't know if you are selling your house because of your PD, but only you know your situation and what your comfort level is financially.

 

For me personally, I had to fight back. I did that by getting involved in many PD organizations, etc. The biggest way I fight back today is by rigorous exercise. I participate in a non-contact, boxing-based fitness program for people with Parkinson's - and I believe it has made a difference. I believe it has slowed my progresion, kept me more agile, fit, etc. I would really encourage you to exercise - rigorous exercise. Force yourself to do more than you think you can - it's called 'forced exercise'.

 

More than anything is attitude. Will your life change?  Yes.  Will it affect your loved ones? Yes.  Did you want to be in this (PD) 'club'?  No.  But you are.   Are there worse things? You betcha.  I can only hope that the funding and research will continue to improve medications to address the symptoms and that one day - in time for you and me - there will be a cure.  I would encourage you to find a support group. It could be online or in person. I'd look for a young onset group or check out the national PD websites to see if they have info on a young onset PD support group in your area.  Sometimes the 'regular' support groups can be a bit overwhelming to someone newly-diagnosed.

 

Best of luck and keep us posted. Hopefully others will share their thoughts and experiences.

 

lizzy4451 

Posted 7/7/2014 10:40 AM (GMT 0)
Lizzy,

I certainly appreciate your thoughtful reply. I agree that exercise is important and have already signed up (and started going to the exercise room of our local Island Community Center and have racked up quite a few miles on the treadmill. Gotten heart beat into the 130s, occaisionally to 150... well above the recommended 120 for a 68 year old. Not that that is desireable... just shows how seriously out of shape I am). I plan to stay with it.

I live on Islesboro, an island three miles off of Midcoast Maine. I'm also seeing a homeopathic doctor and am going for acupuncture treatments, have changed my diet, drink a lot more green tea and a lot less alcohol. Ive found and made a good friend of a fellow who was a techie (Information Technology) who switched to being a psychotherapist (now retired) who has much more advanced PD than I have (in two years).

I have given some thought to joining a support group, haven't decided I can handle participating with people with more advanced PD, especially if they are struggling with dementia, which such a significant number of PD people are.

What I appreciate in your message is the determination you have to be positive about your illness. In spite of my seemly "pro-active" stance on this I remain deeply depressed. Lethargic with a sense of profound dispair. I'm hoping this will turn around. Not keen about flattening my emotional life with anti-depressant
drugs... but that may be necessary. I think getting reliable statistical information about outcomes of the disease, while it might not be information I want to hear, would make me feel less like a 747 pilot running out of fuel who turns to his navigator to find his position and gets an answer "I don't know where the hell we are."

I do find your attitude and active stance uplifting. I find PD and medical consultations to be like being in the cockpit without an altimeter.

Frank
Posted 7/9/2014 4:41 AM (GMT 0)
Frank,
First of all, thank you for your kind comments.

If I were to guess your occupation, I would guess ... commercial pilot. Your analogies are interesting.

As for depression, the majority of the people with Parkinson's suffer from depression at some point. I understand your comment about '... flattening my emotional life ...' but anti-depressants have their place. The most important thing is to recognize it, if it is there, and not allow depression to rule your life. We, the person with PD and possibly depression, are not always the best one to judge that. We need to listen to our loved ones and friends ... and their more objective observations.

I do have to say that I have been so so so fortunate to have had a slow progression. I would say I am the exception, rather than the rule. And I feel there is a reason for that. And that it is my responsibility to use my involvement and experiences to help others ... and most of all to help others help themselves.

I appreciate your willingness to share.

Thanks!
lizzy4451
Posted 7/9/2014 10:53 AM (GMT 0)
Lizzy, any chance I could communicate via email?

Frank, as a Moderator on the site I have to say that email addresses are not to be disclosed. I have modified your post accordingly.

Lizzy4451

Post Edited By Moderator (lizzy4451) : 7/9/2014 4:52:05 PM (GMT-6)

Posted 7/12/2014 9:11 AM (GMT 0)
Frank,How could a neurologist know how long an individual is going to live with pdFor that matter who does know how long they will live?If we did we could all plan better.Eat drink,and be merry for tomorrw you may die,and you know one day you will be right.When,and if you wake in the morning make your plans,and get on with now.
I believe I have had pd for about 15 years,and during this time I have seen a lot of good people that felt sorry for me pass.We all grieve oover major setbacks in life I was also like you with a wife kids,and grand kids to worry about,any way I ramble on to much.It is early am.Time to go back to bed.I wish you the best.Ed
Posted 7/19/2014 1:24 AM (GMT 0)
I feel for you and have had similar thoughts. One thing that helped a few years ago was getting on the rightness for depression. Depression is very common with PD but there is help, don't delay talking to your Dr and getting help. Though it won't change the diagnosis it will help you think clearer and more realistically. It will also make it easier on your family if your depression is under control. Depression is not a weakness but a real part of PD that can be helped. I was in a very dark place before I started on the right meds. I've been on them for 5 years and I'm very thankful for them.
II am also very concerned about how my health will affect my adult son (my only family). I am fortunate that Im not and won't be a financial burden on my son because I live in Canada and everything is covered. I feel for you for sure, I'm glad I don't have that additional burden. There appears to be many Americans on here who could perhaps suggest ways you can protect assets for your family. I'm assuming that is your greatest worry right now.
Best of luck and hope you get all the help you need in order to. Make things less of a worry for you and your family.PD seriously sucks, but take all the help you can get anywhere you can get it.
Posted 8/31/2014 7:18 PM (GMT 0)
Your opening line, Recently Diagnosed and totally bummed, jumped out at me - THAT'S how I feel, which I find most people don't want to hear. You'll live 15 years, and die of something else, is exactly what my neurologist said. I understand it's true, and the glass is half full, etc. But I'm still bummed out, even though it's now over a year since I was diagnosed. Maybe a little less bummed, as I get used to it. I'm unhappy with walking slow and holding on to things to avoid falling. But in my case what really scares me, bums me out in advance, is mild cognitive impairment (now THERE'S an objective, neutral-enough term) progressing on to dementia. And how many will get there in how long it will take them is apparently even less certain than life span.

Of course the responses to your post from the moderators are all right. And we must take medication, exercise, plan for the future, and live our lives. But when read you caption about being totally bummed, I thought, now THERE is somebody who knows what I'm talking about
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