Oh, Jane... it's amazing to me how you are able to write what's going on in my head, but am unable to cannot express it.
I am very shy, and an extreme introvert. Nevertheless, I had a small group of people (maybe 12-15) I considered "friends". Of that group, there is only one person who has stuck w/me. All the rest.... nothing, nada, zilch. No phone calls, no visits, etc. Clearly I misjudged, badly, the relationship I thought we had. Sadly, that extends to my 3 "kids" ( who are now in their 30's) as well. I virtually never hear from them... and no visits. The last time they came to see me was on Xmas day... and all three live w/in 40 to 90 minutes away. I think they are embarrassed by my unsteadiness, my extremely slow movement. and my DBS-induced slurred speech.
Please keep on with the poetry... it really hits home w/me.
They are ignorant about PD and need to be educated. Have the Parkinson's Foundation send them some info so they can learn about you and what you are facing. God Bless you- Sorry they are so medically illiterate.
I am so sorry that those you love the most are those who give you the least. My theory is these people are frightened they are going to lose us and their way of dealing with this is to pretend nothing is happening. My husband and children are unable to talk to me about Parkinsons and while I find out as much as I can they will not talk to me about it. I shed a tear when I read your post as we can all visualise ourselves reaching the same point as you. I am sure they love you, but just can't handle the situation. Sorry I can't offer you any more comfort except perhaps you should show them what you have written and maybe they will understand how YOU feel.
I can relate only too well with your comments.My children and Husband are wonderful but none of them want to talk about my Parkinsons very much at all.My husband won't talk about it but notices everything I can and can't do and reacts accordingly in that if he sees I'm struggling he will take on that job without fuss. The trouble is I feel like I have to explain all the time,how I feel and why I can't do something.I know the children don't want to admit to themselves that I have an incurable disease and guess they think if they don't talk about it ,it will go away!!
Exactly. Well expressed! I go through a similar scenario myself. It's like, maybe if we don't talk about it, or ignore me when I'm having some trouble, that it will go away. Oh well. At least we can communicate our feelings with others who also have to deal with living with PD, in this forum.
As a caregiver it is hard to live with a loved one who is stricken and whose every day is slowed and consumed with random symptoms. We cannot alleviate your symptoms and our lives continue outside of your PD. Yet we also feel inflicted as we give up and limit our own activities because of our patient's needs. Spontaneity becomes impossible, time off work is consumed by care taking and doctor's appointments and conversation is dominated by descriptions of symptoms and possible cures. It is hard to be so needed and we can feel guilty for trying to live out our own lives. PD is a very lonely illness and the duration is a lifetime, cut us some slack.
Yes as a caregiver myself I agree how difficult it is seeing the one you love change, struggle with everything. I sometimes stand back and watch my husband struggling and cry I never let him see me cry as he does not I believe he sees what I see. Life changes for the carer too all hopes and dreams slased, but love conquers all eventally and I am lucky at least to still have him . I have lost members of my family prematurely one with motor neurons disease another cruelty. I take my strength from him and my God , take care of yourselves x
Can you imagine what it would be like to have PD and being a caregiver for a seriously ill heart patient. That is my situation. I don't have time to give in to my PD symptoms, and I don't have a caregiver, so I just keep on keeping on. It's not easy, because I'm well past the beginning stages of PD progression. I understand the frustrations of being a caregiver and a patient. It's good that we have this forum to discuss these things, with others in similar circumstances.
As I read your poem, I felt many emotions that so far have eluded me on this journey of ours. I could almost taste your despair, panic and pain. You ask 'What's wrong with people?'. I think, they are scared out of their minds and just turn their faces away because they do not or cannot face up to the realities of this dreadful disease. They can choose to pretend its not happening...we can't. Brave is probably not the best word to describe the strength you are showing in dealing with your fears. Whatever stage of the journey we are at, all of us understand where you are coming from at this moment in time. I just wish and hope that the people you love, who you feel are denying you the love and comfort you need, could read your poetry. I have read some of your poems before and I know you are in a bad place at this point. I pray you get some comfort from all of your friends here, who really do care.x
I posted this poem on my Facebook page 16 hrs ago, a place where my friends and family can keep in contact with me. As of a few moments ago no one has even opened it up.
We deal with Parkinson's with lots of comedy. Watch only funny movies and You Tube clips. PD patients can get pretty demanding at times -- they want something and they want it now.
Family does not want to face that they could have the same messed up genes. They don't call -- because they don't want to feel obligated to help.
My advice -- find people who love humor and get involved with them. Get some sunshine everyday. Get a physical trainer to come to your house or gym and work out at least 2 times a week. Don't dwell on what you can't do -- find things you can do.
I am so sorry. Talking about PD, laughing and crying together has made life in our household almost normal. My husband was diagnosed 20 years ago and I am his caretaker.
There is no excuse, for not being there emotionally for you, but I have seen it with some friends and family members too. They do not know, how to handle the situation, so they stay away emotionally and physically altogether.
Hello gorgeous you, I read your poems and understand they are a release for you, but the content makes me sad. Whilst my health is changing I am happy that I continue to be very happy and fulfilled. Yes I battle things, stiffness, pain, and all the other stuff PD brings but I dont think on it. Everyday bring the opportunity to max it out, and thats what I try and do. All I am really saying is thinking of you xxx
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How much more
Trying to figure out what's wrong with me?
What if we are approaching this all wrong?
