Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
My husband was diagnosed with PD.about 6 years ago and now 65 years old.
I know I've been babying him too much and it hasn't been good for him.
I wish that I'd handled things differently from the beginning and maybe he would be a different person with this disease. I see on this website how other people handle it and wish he would be more proactive and help to improve himself, but I know he doesn't have the energy to do things. Fatigue is the biggest challenge.
I can see how he's gone downhill over the years and he could do more to help himself, e.g. his posture, speech, exercise among other things.
He never enjoyed the Support Group in the early stages and only went a few times, although I went but finally stopped. too. He didn't like seeing other people worse than him at the time.
He could have joined an exercise class but didn't. Now he does walk around a couple of blocks but not daily and doesn't exercise otherwise, although in the cold months he'll use his recumbent exercise bike.
He doesn't take interest when I show him other exercises to do to help different parts of his body. His speech is getting worse such as remember words. etc. and it's softer in volume. He doesn't talk much when in a group because he can't express himself without loosing the words he wants to say. The MDS said to read out loud but he doesn't even do that.
Maybe it's just me, but if I had PD, I would try to help myself more........ I am kind of beside myself because I can see how it reacting on him and it's sad to see him be this way after being such a big strong man. .
I am trying to step back and not mother him, which I think I was doing..........as my kids said that I tended to do.
Yesterday he put up a broom handle holder on the wall and I let him do it all by himself, even if it was a struggle for him.(before I would probably be standing over him). He doesn't have the strength anymore to do things that he used to do so easily, but I tell him not to give up. His back bothers him, but I said that you can't give into it and have to continue to try to do things.
I do most of the business too because it's getting beyond him, but he does do a little bit to keep his mind active, even though it takes such a long time for little tasks.
Well, I guess I've said enough and had to talk to someone in this way. Sometime I cry to myself at night just thinking about the future. I just pray that he will try to help himself more everyday so that he won't end up in a home before his time. That is my biggest worry!
Thanks for listening........
LYNNIE
I know I've been babying him too much and it hasn't been good for him.
I wish that I'd handled things differently from the beginning and maybe he would be a different person with this disease. I see on this website how other people handle it and wish he would be more proactive and help to improve himself, but I know he doesn't have the energy to do things. Fatigue is the biggest challenge.
I can see how he's gone downhill over the years and he could do more to help himself, e.g. his posture, speech, exercise among other things.
He never enjoyed the Support Group in the early stages and only went a few times, although I went but finally stopped. too. He didn't like seeing other people worse than him at the time.
He could have joined an exercise class but didn't. Now he does walk around a couple of blocks but not daily and doesn't exercise otherwise, although in the cold months he'll use his recumbent exercise bike.
He doesn't take interest when I show him other exercises to do to help different parts of his body. His speech is getting worse such as remember words. etc. and it's softer in volume. He doesn't talk much when in a group because he can't express himself without loosing the words he wants to say. The MDS said to read out loud but he doesn't even do that.
Maybe it's just me, but if I had PD, I would try to help myself more........ I am kind of beside myself because I can see how it reacting on him and it's sad to see him be this way after being such a big strong man. .
I am trying to step back and not mother him, which I think I was doing..........as my kids said that I tended to do.
Yesterday he put up a broom handle holder on the wall and I let him do it all by himself, even if it was a struggle for him.(before I would probably be standing over him). He doesn't have the strength anymore to do things that he used to do so easily, but I tell him not to give up. His back bothers him, but I said that you can't give into it and have to continue to try to do things.
I do most of the business too because it's getting beyond him, but he does do a little bit to keep his mind active, even though it takes such a long time for little tasks.
Well, I guess I've said enough and had to talk to someone in this way. Sometime I cry to myself at night just thinking about the future. I just pray that he will try to help himself more everyday so that he won't end up in a home before his time. That is my biggest worry!
Thanks for listening........
LYNNIE
Good luck Zlatica
I am lucky to have such a wonderful man even though he isn't the same person he was before this awful disease, however, we all change over the years as we get older and our health isn't the same.
I thank God that it's a slow progression for him. Yesterday I gave him a bottle of new lotion that I could not open. You know the kind where the pump has to be opened before you can pump. Well he managed to get it open for me and was very proud of his accomplishment, just by the way he was smiling and walking proudly to give the bottle back to me... . I love to see him smile. I think that's why I fell in love with him when he was 16 years old.
and is strong in his way. It is great what you doing your husband feels like he is still needed and he will do better. God be with you all the way.
Zlatica
Yes everything looks easy in retrospect.
I can identify with most that you say. I've been there, seen it and done it, believe me. Yet it need not have been that way and indeed, it need not be that way now.
I was in a negative comfort zone and I turned it all around by 180 degrees and reinvented myself. I was a physical and mental wreck. Four year ago I was being considered for a nursing home. If I can do this on my own, then how much easier if you have family to support you.
Jettisoning the negative me, I worked on myself in a totally positive way.
I think, feel and believe that there are three ways to manage and deal with Parkinson's condition, they are -
1, attitude
2, attitude and
3, attitude
Medication is essential,
so too is a positive attitude,
an 'I can do' spirit,
together with a optimistic outlook.
These three vitals are driven by my self belief, mental strength and total commitment, nothing less will suffice.
When Parkinson's comes hard at me ,I go hard at it.
There are no quick fixes, hard work is the key.
Being active is vital. I play table tennis, I play bowls, I ride my bike, I do yoga and tai chi and I walk a lot.
I volunteer myself for Parkinson's research. I do not have a carer, I do everything myself.
So you see, it can be done, it doesn't have to be the way you describe.
I leave you with my own personal mantra,
FIRE UP, AND MAINTAIN A WINNING POSIION.
I am happy to be of any help,
ALIVEO/ Stewart
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