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Gardener

Struggling with family relationships

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Seven years from diagnosis I'm struggling  with expectations of family and friends.  I'm the type of person who doesn't dwell on the disease and have tried to live as normal a life as possible but the fatigue is really getting the best of me and I just don't know how to let others know that I don't have the energy to do the things I have done for so many years.   Instead, I keep trying to keep up - maybe because I know if I stop then I'm giving up.  I would like to hear from anyone who is a spouse, parent, grandparent, etc. who is dealing with this struggle.  Gardener

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Hi Gardener,  I was diagnosed in 2014 and am tremor dominant.  To me the worst thing about pd is definitely the fatigue.  I also just keep going.  I think the Sinemet adds to the fatigue.  About 20 minutes after a dose I start yawning.  I don’t know the solution to this so I just keep going. We are supposed to go on a cruise to South America in February .  I have mixed feelings about doing this because of the fatigue.

We will have to see. But I am not giving in to this as long as I can!  

Best wishes, Lorraine

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While Patriot is correct that might not be the most useful way of stating that.

 

Consider switching to Rytary if you either have insurance coverage for it or meet the income guideline to get it free from Impax (300% of federal poverty level for your family size).  I found my day time sleepiness was significantly reduced when I made the switch.

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I am learning to listen to my body and treat myself with kindness. If someone is disappointed when I say I have to stop or rest, I let them have their feelings and do what is best for me. I have more energy for the people and activities that bring me joy when I stop worrying about others opinions.

Dianne 

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Thank you all for your responses - there is help in each of them.  I'll ask about Rytary at my next appt.  And, yes, Sinemet does make me sleepy.  Patriot, you are right and that is why I keep pushing myself.  One day at a time...  Gardener

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Gardener,

Thought I’d throw my two cents into the discussion. I struggle with fatigue on a daily basis. What I have discovered is that when I take a 100mg of trazadone the night before, I’m a little sluggish the next day if I am not active. Like Stump, I also take Rytary and have discovered that it will contribute to my fatigue when I am less active. My solutions are to take half my trazadone dose on work nights. This means my sleep is less than optimum but I am resting. If I know I need to focus at work in the morning, I’ll skip my morning Rytary. This leaves me very stiff but when your sitting on your butt at work, what’s a little rigidity gonna hurt. The bottom line is I’m learning to tinker with my medicine to improve my functinioning. It’s a balancing act and seems like I’m constantly robbing Peter to pay Paul.

i hope you find a way to cope with your fatigue.

Dave

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Hi Gardener,

I was also diagnosed 7 years ago and struggle with fatigue. Unfortunately many times family members only see the visible symptoms like tremor and don't understand the cognitive and internal challenges we have. Although its good to push ourselves because that's sometimes the only way we know how far we can go, it has to be balanced with learning to listen to ourselves and and our bodies and take a slower pace when we need to. I understand the want to "power through" and not letting on to others that you can't do it, but it's a strategy that created a lot of stress for me. I found it was not so much my family's expectation of me, but more so my attempt to keep hanging on to what I used to be.

If your relationship with your family is such that you think having a more formal discussion about it is the way to go, then tell them about how fatigue is a major symptom and that sometimes you won't be up for doing things. In my case I did it more casually when specific things to do came up, I'd just say "that sounds great but I'm feeling a wonky today and will pass but thanks for asking". After saying that a few times, they got it. Regardless of which way you go, have some self compassion for yourself and find the rhythm that's right for you now and don't feel like you have to keep up with others. Best to you. Kai

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Hi Kai,

You are right - this has more to do with my own expectations than those of others.  I wish I could take care of my grandson so he didn't have to go to daycare and I miss going on sister vacations.  When I was diagnosed my younger sister, who has down syndrome, was living with me.  She was like a daughter to me but I had to make the difficult decision to have her go with another family member.  I don't have visible tremor (I do have internal tremor) so my most troubling symptoms are not apparent to others.  Thank you for your  thoughts and good luck on this journey.  Gardener

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I also often have fatigue, but I do tend to rally when I have to. I seem to always expect to have trouble, but once I'm engaged in an activity or trip I seem to do okay.

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If I push myself physically then I get emotionally fatigued also.  I did not tie the two together until I discussed it with Dianne on a different thread.  I started paying attention and sure enough, when I let myself get physically worn down then I tend to have problems mentally, like tearing up over what should be a normal life situation.

Gardener- you're not "giving up" just because you acknowledge that you can't do as much as you use to.  I feel like such a stick in the mud when I have to tell  my husband that I don't feel like going out or I can't continue to work on a project with him.  I've accepted that none of my family will fully understand my fatigue issues because they can't "see" it.  I believe only those with PD or similar health issues understand.   What I don't understand is why we are fatigued but can't sleep?????

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