Dad coming to NY next week...make doc appt.
 

Ok, most have seen me post about my dad. He was diagnosed with PD a few years ago and he is now 70 years old. He says his only symptom is tremors in his right hand. He has been to three neuros in Florida and one movement disorder specialist at USF and they have all confirmed PD. He has tried several medications and some with bad side effects. HE is now on Levadopa/Sinemet. He says the meds have never made his symptom better but he claims it might not be making his disease progress. He does have depression since being diagnosed. He is his own worst enemy. He has no desire to do anything anymore and really does not try his best to better himself. I think a big part of it is that all his life he wa sa competitive runner and triathlete and took GREAT GREAT care of himself and ate SUPER healthy and this happened to him.

Well I am making an appointment for him when he comes here and I want to ask the doctor questions myself. Can anyone help me with what questions I should ask please. I really appreciate your help.

Geeez is it me......109 views no response

Hi Horsegoer, you sure threw out a challenge when you said 109 views and not a response. So here I am...... and maybe someone else will follow.

WE, us PDers, are all different, so perhaps someone will come along and say, no, she's wrong, this is what you should do! But this is my take on it.......

First thing you must appreciate is that though some of the things you are seeing in your dad seem to be psychological they are actually likely to be more neurological. In other words a result of faulty neurotransmission, the messages not getting to the right places when they need to, and a resulting fault in the things we normally do automatically, without thinking. This can have effects that appear to be psychological. For instance depression in PD stems from a physiological problem that has a behavioural effect. It is not neccessarily the result of 'feeling' depressed or sad. It has not got a psychological cause, like trauma, loss, it is more a subduing of the persons activity, a poverty of movement is how they describe the physical bits, but there is a slowness in our mental activity too. Likewise with a lack of motivation, sometimes called apathy - a lot of that is due to an inability to initiate actions easily and make decisions. It is not a choice we make, it is an inability to make a choice...... It is not about being your own worst enemy, and it is often about how others perceive you, and how you perceive yourself in relationship to what you were prior to PD.

I was talking about this to a lovely and quite active lady recently, she also has PD, and we were discussing the topic of 'procrastination' - because that is what it gets labelled, you know, when we do not get round to doing things. Often the intention is there, but it gets hijacked by the day, and once this has been going on a while, we reduce our expectations of ourselves. Actually when you tease out the problem one of the major things in Pd is a progressive inability to multi task. This can become overwhelming, there is a thread that mentions it on this forum right now, see Paula's post. When so much concentration goes into walking that one can only do that one task, to the exclusion of other thought.

In our heads we are the same people, with the same dreams, but when we come to move, to do things, then we are not. Little children don't have to think about walking, about putting one foot in front of another, but we do, it has stopped being instinctive. Other people rarely understand this, or how it affects us in so many ways. To be honest it can be difficult to talk about, and sounds like an excuse, and eventually quite a lot of us have enough to deal with anyway in just being in the day, and being with people who don't see us but can only see the difference between what we once were and what we are now can be challenging and difficult.

Often people don't see our limitations, they see what they perceive as lack of willing to do things, or lack of interest, and put some kind of behavioural label onto us. As an experiment I would ask you to try doing a normal day at a third of your usual speed, including eating walking, dressing, making decisions. That will bring you a little closer to what it is like, because you will have to think about everything you do. And that is what a lot of us have to do, one step at a time, every day. Actually even thinking about how your day would be will give you some kind of idea. Imagine being in a busy street, say in a big city, and you are walking at a third the pace. Life looks very different from that perspective!

You need to understand this disease and how it affects people. For instance if you help with decision-making, not as a way of taking over, but as a way of ensuring that your dad gets out, say by offering him choices, then you are helping to bypass some of the multi-tasking problems. If you or someone else can help motivate him to exercise, maybe by going with him, that could help. Doing things together, with no pressure for end results, and no criticism for not completing tasks, or even not being able to make it that day. It could be something as simple as preparing a meal together....

This is a complex disorder, not all what it seems to be from the outside, and is often interpreted by what is usual for non-PDers. Our normality can include things that seem like a dropping of standards to other, but for us it may simply be letting go of all but the neccessary.

I am sorry I have gone on about this, I hope it helps some. The most important thing to remember is that your dad is still there on the inside, still the person he was, but is struggling with his own new reality, which is of limitation, something he is not used to, especially if he was a good athlete in the past.

Doctors can help with the physical stuff, and even our own version of depression is treatable, preferably by a neuropsychologist who has experience of it. It can help resolve some of the motivation and apathy issues that many of us struggle with. You cannot treat for the less tangible things though, except with kindness, and generosity that still sees the whole person inside the PD body. PD is your fathers worst enemy right now. It is a changeable and fickle enemy and takes away a lot of the things we take for granted. There are communication issues too, tone of voice and lack of smile can influence the way our friends and family respond to us. Exercise helps immensely, laughter helps, doing things with other people helps. And sometimes medicine holds back the tide, and slows the progression for a while. And sometimes gives us a little more quality of life.

It can knock people back to get PD when they have looked after themselves all their lives, and taken care of themselves. PD is an elusive thing though, and even the doctors and scientists struggle with it. It is not your dad's fault that he got PD, no-one has every been able to find a definitive reason why we get it. There are some who think that it is multi-factorial, and others who say it is not even one condition but many. We are all living with something that has the medical and scientific world puzzled too.

Ask the doctors about PD depression, and discuss it with your dad first to get his ideas on it. The right medication for a person can help bring back some joie de vivre.

Best wishes for you both, as you try and find a better quality of life. You are interested in and care about your dad, and that is a wonderful thing.
Lindy

The only symptoms he has are tremors in his right hand?..Is there anything suspicious other than other than his tremor?..How is his gait?

Depression will make pd sypmtoms 10 fold worse..I went through 2 years of depression before I finally went on depression and anti-anxiety drugs..Those drugs gave me a good chunk of my life back

I wish I could give you some insight about your Dad's tremor, but I have had pd for about 9 or 10 years, and Ive never had tremors..I know people who have had tremors, and they have had to go through alot of trial and error with meds..DBS seems to be the best course of treatment for tremors, because the patient goes into surgery off all pd meds, and when they find the right spot to place the leads, the tremor/s stops

I highly recommend the Cleveland Clinic..They spend alot of time with their patients, and they are very thorough and acccommodating..I have alot of confidence that they would find out if your Dad has pd or not

I wonder whether your Dad is actually depressed or just suffering from the lack of motivation which as mentioned above is a symptom of PD. In the run up to my diagnosis I could sit for en entire day apart from feeding myself and have no interest in doing anything whatsoever. I knew I wasn't sad/depressed but was inert and fortunately for me the next day I would be better - perhaps my brain needed a rest from the multi-tasking. I have been depressed in the past and it is very similar but once on the right meds. - sinemet with the addition of rasagiline 18 months later - I am quite the busy bee.
I keep my diary full so that if I do have the odd inert day I am drawn back into activity so if as Lindylanka suggest you can make suggestions and your Dad goes along with it, it will keep him going forward

Wow Lindy... Thanks a lot. I really appreciate that. I am oing to email what you wrote to my parents. I still want him to ind out why ocs are dx him with PD with only tremors. Thanks again

Thanks. What meds helped with you depression?

Thanks!!!!

The generic versions of Wellbutrin 100 mgs x 2 daily for depression and 100 mgs x 3 daily Neurontin for peripheral inflammation and anxiety..Also Valium 20 mgs x 1 daily, at night after pd meds wear off for anxiety