I was diagnosed as having PD about 6 years ago, despite being a gym rat, eating well, not smoking, etc..
My primary support system was comprised of my sister and brother-in-law, as my parents had died. My sister was very helpful in finding a new apartment for me to rent, since I had to leave my condo because of unfriendly, criminal neighbors, and was in a psych ward for having seriously considered suicide. My relationship with my sister was fair to good, even though we'd had serious problems related to sibling rivalry as kids. I'd also struggled with Depression/Anxiety Disorder and occasional but severe hypersensitivity since childhood.
Unfortunately, as the disease progressed , with new symptoms (curling toes, weakness in the legs, eyelid twitching, stiffness in the arms) popping up every four months or so, despite my efforts to combat the disease with exercise. I felt immense pain as well as despair, possibly because the PD combined with my other problems and they exacerbated one another. I leaned upon my support system often - probably too often - and a burnout period began. My sister became cranky, and it didn't help that much of my adult maturity and capacity for restraint had been degraded by the disease. After a while, our weekly dinners were not something that I looked forward to. After being yelled at once too much, I sent her a couple of e-mails suggesting sibling therapy, which she rejected, and then a highly critical letter, by which she was deeply offended.
Excepting necessary communications, she her husband basically cut me off for 9 months, after which what I thought was a period of reconciliation began. I was somewhat shocked at having been cut off for such a long period, as it felt like my sister was no longer against my committing suicide, but was attempting to make it more likely by making my life more difficult. Finally, last night she sent me an e-mail saying that in a year, she and her husband would be moving to a state 400 miles away, and would be gone for 4-5 years. When I expressed my dread over this decision, she responded that she could convey support from her temporary new home.
Has anyone here had a similar experience?
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Alock2020
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Alock2020 Absolutely agree with your experience and your observations and YES, this horrible disease destroys the normal aspects of "family". Literally tears apart, the support system and makes you reassess your own self worth.
Parkinson's patients lose their dignity, self respect, value placed on us by others and society and unless you are a Michael J Fox, Pope John Paul or Muhammad Ali, your worth as measured by society goes to zero.
Yes, its very hard on you and all those who love you. For me the answer is prayer. God is very big and strong. He loves your beyond all knowing and will not turn away from you no matter what you say to Him. Turn to God and ask for help. Express your sorrow for what you may have done to hurt Him. Thank Him for everything you have that is good. Begin to love Him. Admit your weakness. Offer Him your whole life. If you have a faith tradition, follow it. If not, ask Him to send you a spiritual friend. Be a spiritual Gym Rat. God will take you on a wonderful journey with Him...
Why would God, who I presume is all-loving and all-powerful, at least in the Christian tradition, create horrible diseases in the first place? Isn't it rational to suppose that suffering is evidence for there not being such a deity?
I am so sorry for the suffering you are going through. You asked gallowglass an important question. The problem of evil is a huge issue. Theologians and philosophers have a whole special category devoted to the study of it (called theodicy). But evil/suffering are not the end of the story because God overcomes evil. He CAN make good come out of it.
In my own experience of suffering and watching the suffering of those close to me, I think that one reason God allows suffering is to change people for the better and to bring them closer to him. That’s what happened to me. But I have a friend who has lived in a nursing home for about 15 years (after a brain bleed), and her suffering has made her angry with God. So I have seen both sides of it—suffering can make people “better or bitter”.
Right now you might feel you are in the “bitter” camp. But I am confident that God can redeem your suffering. I firmly believe that God has a plan for you and, if you let him, he’s going to turn your “misery into your ministry” and use you to help other people in a way that no one else possibly could.
So my prayer for you is to lean into this hope! It may feel like God has abandoned you, but he hasn’t. On the other side of this suffering is his supernatural restoration. And when you have reached that side, he is going to use you in a mighty way! Don’t give up on him. Like gallowglass said: seek him (pray, read scripture, etc), ask for his help, and surrender your life to him. It may not change your Parkinson’s (or it may!) but it will completely change you!
Good question! I’d suggest that this question would be good to bring up in a conversation with God. But be respectful and be prepared for your life to change in amazingly wonderful ways. Remember that many believe that God gave His sinless son Jesus to save us and to suffer much more than PD. So God gets it! As for rational, I’d say that we can’t know good until we know bad, we can’t know good until we know evil, we can’t know selfless love until we’ve seen the worlds cheap counterfeit of it. So the rational question is love worth it? My answer is yes….
Pain & suffering are because of man sinning. God did not create this disease, evil came into the world with man's choice to sin.
God loves you. He will help you if you turn to him & believe. I believe God is with me & will help me thru .. and my suffering here is nothing compared to the eternal life with God in the future.
It sounds like your sister really was there for you even though you had difficulties. I believe in doing everything you can to mend relationships and not burn a bridge. Having time off from a dysfunctional relationship is good but ultimately you may need her in your future.If you could find a physical face to face parkinsons support group , I think that would be really good for you.
Another idea is a good church that could offer community and support.
Let people know you don't have a support system. You may find others just like you and you can support each other!
You never know what's around the corner in the next 5 years, maybe a life changing treatment that will make your life a lot more comfortable.
What an unfortunate situation here; it definitely sounds like your sister has experienced burn-out. Are you on any Parkinson's medication? You mention that you are combating PD with exercise. If you are not on PD medication, I would suggest you take it. It will do you a world of good. Maybe take some time to reflect on your reliance on your sister and maybe consider the impact it has had on her and on your relationship. You say you sent her a highly critical letter, which is not the right tact at all. Have you let her know how much you appreciate her support and thank her for the efforts she has put in to help you? I don't say this to make you feel bad, but you have to start learning how to help yourself. She is not moving for another year, so that gives you lots of time to get your ducks in a row.
I'm on C/L, as well as a bunch of other things. I'm trying to mend things, but my personality, or at least my capacity for patience and restraint, have definitely regressed.
I do understand; PD takes away a lot of things. And some people don't have it in them to be caretakers; I don't mean that in a bad way - it is not an easy job by any means. Is there any possible way you can have a visiting nurse, or even pay someone, to come in occasionally to help out, even if just a few hours a day?
My family is trying to get me to move back to New York from Florida. Im really not into moving back there though, Florida is too good for me. As for your situation, she may not be up for siblings therapy, but it sounds like you should see the counselor yourself anyway. You might get some help there. Good luck friend and fellow gym resident!
Alock2020 thankyou heaps for sharing so openly. I am still in discovery phase of PD (possible MSA ) and I hear you loud and clear...this trip requires specialist skills & alliances. I have increased my prayer + work-outs as my initial trial of "Kinson" Levodopa + Carbidopa 100-25mg has done nothing...hence MSA is to be considered.
I'm sitting here typing with our life/house in boxes as our move from Perth Western Australia to Tumut New South Wales failed and we are going back home...we are too rural here and need a bigger more diverse support system.
Do you have access to a PD association? They "get it" and they won't run away...just a thought as I am in a support group here with a bigger group in Perth. Hope this is helpful, feel free to keep sharing.....we "Get it"
MellowYellowcup . I guess moving away from a place you are used to and then moving back has to be traumatizing by itself. I am amazed by your attitude.
We moved from the northeast of America to the west coast and it was a huge adjustment. The doctors are different, have different attitudes and different ways of treatment and different ways of relating to you. I think it might be the same in Australia?
I really think we need convalescent homes for chronic conditions like ours. It still shocks me to know there are none. But maybe others know of such places? Like a group home for PD? Many of us are single and liviing alone. This is not normal even for healthy folks. Independence is a false value. Humans are not designed to be alone. Our society is killing us. Annd it's not like that in other places. For example in Spain all the expended families gather daily, and it's just a given. I'm so sorry this is happening to you, and so many of us, me included. I don't have anyone to help me sadly, and what's worse, I am stuck having guardianship of my mother. I can't handle it anymore ... and I am about to have to move a 2nd time in the last 3 years.
I really feel your pain and frustratiom. I have come to understand that some people just can not be caretakers. They have not got the skills and empathy needed. There are some amazing companion/ caretakers who make their living doing it..who truly love what they do. It can be costlybut so worth it ! Even a few hours, a few days a week is so helpful to have this kind of support. It can be costly to hire someone but ask around and network. Also, contact Aarp, Council on Aging or another local agency that helps seniors and see if there is funding available. The Parkinson's Foundation also can help and is just a phone call away. I will say that once retired I became a part time paid caregiver and I know I have helped my clients regain more active pursuits, helped around house with difficult tasks, advocated for them with doctors,helped them research their condition, helped with good nutritious meals and shopping and provided true frienfship laughter and support. I care for them all as if they were my family
..but, understand... I am a born caregiver personality, and there are many of us. Your sister does not seem cut out for this and it seems to have overwhelmed her. Honestly, some people just are unable to provide care.
Interview a few folks and find your new, willing and caring caregiver/ companion and friend.
Best of luck. You have got this. There is still fun and joy to be had...with a little help from a new friend.
Hi AlockIn some ways yes, I believe it does. My husband has pd, but when we finally started telling friends and family, it seemed like there was this shift. Some good, some not so much. His family has been pretty good, but my family has practically cut us out totally. Which has been very difficult, more for me , since I thought I could have their moral support at the very least, but got the total opposite instead. I don't even live in the same country anymore, so I'm not sure why my family would have felt burdened or the need to just not care. Anyway, mentally, it's devastated me and my husband never deserved that kinda of disdain. As for friends, no one wants to engage or ask. I think people feel scared or something? I don't get it. I just know I would never treat them poorly or cut them off. It's pretty sad. That's how you know who you're true people are I guess 🤷 I hope you are able to mend and move on.Cheers
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