I have always been one that does not like to complain... try to be positive. I have an amazing support here at home but I do not like to constantly complain. I know he see's my pain - frustration, etc.
I cannot keep complaining to him... But as I sit here I just want to cry, I don't have friends - well here anyway. Let alone people that can relate to what I'm going through.
Everyday is a struggle to muddle through this new so called path in my life. Had a few really good months so when these "flare ups" hit me, I take it hard mentally.
It's hard to have sex with my husband (sorry TMI) muscle cramps, exhaustion...
just getting through the day - waking up, or wait even getting to sleep!
Some days my legs do not want to walk, too weak. Standing up in the shower sometimes is even a challenge. Pain in my shoulders/back with major muscle knots.
And people questions my outward appearance because I may "look" fine... yet my brain cannot remember much of anything anymore.
Sorry to Whine... Really am.
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Parkie35
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You are not alone! If you visit this site regularly you will see all the above, in various combinations, very frequently. The muscle pain, weakness & fatigue are the worst for me. Memory loss got me down but as it was drug-induced by Orphenadrine (Disipal) it gradually improved as I titrated off. One depressing factor in treating PD is that as we are all different what works for one may not be effective to another. Sites like this are my best support.
Wow, what you described could have been written by me! I too do not like to complain but just struggle on and try to ignore the pain/discomfort. The memory thing too...I thought I was going mad. People just say 'oh, I've got a really bad memory too' but it's not just that, it's a combination of memory, concentration and drive and I can't seem to do anything about it! Indeed, i'm quite worried as I'm due to go back to work next week after 6 months off and I don't know if I'll cope. The number of symptoms is scary and my other half often says 'you can't blame that on the Parkinsons'. An example, at the weekend I tripped over and cut my hand quite badly (4 hours in casualty/stitches), then got up to go wash it and tripped over the same thing again. Is this Parkinsons or just being in a hurry/clumsy? It's hard to describe, but I sometimes feel like I'm constantly appologising for one or other of these symptoms and I'm getting quite fed up as it's not my fault. Does that make sense?
you are also describing me. Tripping, yes it's Parkinsons. I picked up all my thow rugs, because I will trip on them. Memory problems, yes, me too. One day I may think fairly clearly, the next, I can't remember the simplist of things.
People that think they understand what we are going through, have no clue..
My PT told me tripping occurs from our tendency to shuffle. Guess our bodies think if we keep both feet on or close to the floor/ground we won't lose our balance.The PT taught me to raise my feet higher when walking. At first he had me do a lot of marching and then we toned it down a bit. It's also important to put your heel down first on each step. Still, I do trip but not nearly as often.
Totally makes sense!! I'm totally clumsy now.. memory is awful I couldn't even remember where my sons were buried It took like 3 days to finally remember, remember that I even remember people that I know. it's all so frustrating.
You think you are alone, and don't hace any friends, but you will always find someone on this site to chat to, and empathise with you. We are all suffedring differently, yet we are united in fighting parkinsons (it doesn't deserve a capital letter) Be strong, xx from Christine
You are not alone, Parkie35. We are all here for you. I understand every word that you wrote, as I struggle with some of the same things you are going through. I try to look at every day as a new day and possibly a better day than the day before; but it wears you down at times. We're all human and can only take so much. We sometimes need to get it out....so, go ahead and whine. I've had a few days of whining myself and a few tears. Here's a big hug for you (((Parkie35)))....stay strong, keep the faith, and never give in!
I know how you feel! I spend a lot of time on my ass, the kids say I fall in slow motion, Believe it or not I hit a pickup truck head on, my ride was a rice rocket, donor cycle, whatever. After the splat I spent the next 9 years in a wheelchair, with pd. 10 years latter now I am walking again, what a bitch it has been building muscles that don't want to be strenghtened for some reason! weak and tired, no sex, no quick thinking, remember what? and the off times are like the pit. Here is my theory, the purpose of suffering, or discomfort is for the growth of the inner man- woman. In fact I would go hit the same truck again, for the lessons learned. When things are clear and I can freely move communion with our Father is wonderful and just a half hour with Him causes the rest to pale. That is not to say some choice words don'ft fly aroud the house, and complaining, and feeling like I should go hide so I don't burden anyone, in fact maybe I could leave and never come back, has crossed my mind. However those times of clarity keep me going, it has been 17 years, and now I am begining to realize I am not well. But inside I am a youngster, still dreaming but unable to make anything happen much in the 3d world, walking is as good as I can do. My dear sister you and I are necessary and have a purpose till the end. What if we are modeling how to get through things?
What if we are being used to teach others to love?
What if we are the source of hope for someone?
What if there is one thing we were created for and we are almost ready to pull it off.
What if we should all slow down and contemplate?
What if in the end it all goes away?
What if we are then able to see the dreams become our reality?
Your friend bill, spread the love, I know it is hard but it is most amazing.
You are very inspiring.. Amazing story you have. Thanks for sharing!! I completely agree to what you have said. It's how I got through a LOT of other things in my life by sharing and helping others. Actually have a wordpress blog too
I hear ya. I try to live a normal life. I must say gift of PD has been I cannot be shy and must speak to strangers to get help. A meeting I've attended years I knew no one & noW knoW everyone. More mindful. And I'm not late. Life long tendency overcome so I won't miss things. Rather not have PD but has forced me to be better person
I second that (e)motion. See if you can force yourself to go to a PD support group. Taking that first step could make a huge difference in your life. So many opportunities including becoming aware of resources, knowledge from support group speakers/ presentations, developing relationships/making friends, sharing as we do here but in person and in more depth/emotional support. I'll be rooting for you to go. Please let us know.
I hear ya. I try to live a normal life. I must say gift of PD has been I cannot be shy and must speak to strangers to get help. A meeting I've attended years I knew no one & noW knoW everyone. More mindful. And I'm not late. Life long tendency overcome so I won't miss things. Rather not have PD but has forced me to be better person
It is an amazing thing that PwP are often very comfortable in the company of others in the same boat. Something about a recognition of the similarity of some of the things we go through even though our symptoms maybe different. In some ways PD affects us more profoundly in our inner self, because it changes the way we see ourselves and the things we dare to dream for ourselves. This can be a catalyst for inner change. Having a long term condition can make us focus on the things we can't do anymore, and sometimes everything , the whole world itself, feels like an obstacle, but it is important to remember that messy as life can be with PD, we are still the person we were, and life can still be good.
If you have not looked, do so now and find a support group. Talking to people with the same struggles gives you strength and they can help keep you from re-inventing the wheel. My husband has PD and I hear you loud and clear. The group has been my salvation. I learn so much from them and they help to reduce our frustrations.
Thanks to everyone that left me a comment. Helps bring me back to where I need to be - or should be. Or at least push for that! I also have a blog on word press if anyone is interested. tooyoungtobeparkie.wordpres...
hi parkie 35 you ave just described me 2 its a very lonely disease do join a support group if u can it helps only dx in march after 2 yrs complaining thought i was goin mad luv fiadh
The thing I find so amazing about PD is that every one of us has to b medically treated because the way it acts in each of us is different. requip for one, sinement for another, the feelings are universal. I was an airline pilot, a job that was kind of being the ultimate multitasker, now I have to stop walking just to push the door lock or unlock on the car. People say about PD oh thatgs not so bad they can treat that now, your lucky. We have no support group anywhere around us, but my wife is hell bent to start one for both pwp and their caregivers. This is the closest I've come to one and I see now we really need group support. Glad my wife found this spot.
Azilect is a great aphrodisiac; I hear that mucuna pruriens is, too. You need to see PD friends in person; I hope there's a support group you can get to. Individual counseling is vital, too. This is not an easy road, but I think it can get a lot better for you.
My doctor also said early on that people who participate in clinical trials tend to do better overall with PD. I have found this to be true. See clinical trials.gov. You are contributing to science, which wrings some meaning out of your suffering; you meet a lot of interesting people; it keeps you busy and helps you form a constructive attitude; and you get much better treatment, as you receive treatment from numerous neurologists and other specialists. You also get first wind of new theories and treatments. I have been in more studies than I can count, and it has become a part of my value system. I didn't want to have PD, but since I do, I'm going to find some way to make a contribution. When you write back to update us on how you have overcome some of the problems you wrote about, you'll be making a contribution, too. Take good care.
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I’m a B1er (one that has found success in B1), A few questions to others.
Need help please to manage one more sympton
Medical Miracles with Ambien - Hamilton's Pharmacopeia (not related to PD)
Need your help on this one. Please provide your input.
Maybe I should delete my old posts as I add new ones on the same topic?
