Parkinsons Disease Changed My Life But I Am Fighting Back
I had always been healthy. My main health concern was to keep an eye on my cholesterol. I didnt think much of it when, in my mid-forties, I noticed a small tremor in my finger.
I brought it up to my doctor, who likewise didnt seem overly concerned when I described my symptoms, but sent me to see a movement disorder specialist for an evaluation.
The MDS at OSF HealthCare Illinois Neurological Institute had me go through the battery of seemingly simple tests: tapping your index finger to your thumb, opening and closing your hands, tapping your feet, holding out your hands with your eyes closed and counting backwards, walking down the hall.
Then, she looked at my wife and I and said, You have Parkinsons disease.
When she said those words, you could have knocked me over with a feather. I was NOT prepared. WE were not prepared.
This Reader Is 43 And Was Diagnosed With Parkinsons In 2017 She Lives With Her Partner And 2 Daughters
Some days I struggle to feel attractive, especially when I move around like an old lady and am in pain. But there is an underlying pressure that my partner and I need to make the most of our relationship before Parkinsons takes over. As a couple, weve had to work hard to ensure we still have an active sex life. Open conversation has really helped with that. For example, my tremors can get worse when I am excited, but to begin with, my partner found this difficult as he thought I wasnt enjoying sex. Now he knows I do want to have sex but my body is just a little slower at communicating that to him.
Its as if you need to redefine how you want to experience intimacy with each other. Strangely, Parkinsons has brought us closer together as we understand each others needs far better.
Relationship Tips For Parkinsons Loved Ones
Being in love with someone with Parkinsons disease comes with an assortment of emotions. Some days, you might feel loved and appreciatedpossibly a sense of pride in being the main source of care and support for your partner. Other days, you might feel overwhelmed, sad or angry at the situationmaybe even frustrated with your partner.
These feelings are natural and nothing to be ashamed of. You are in the difficult position of providing care and support for a person who will become increasingly dependent on you, and that person also happens to be someone with whom you are romantically entwined.
Despite the complexities of this commitment, it helps to remember that honest communication, patience and understanding are usually all thats needed to keep most relationships healthy and long-lasting.
Here are some tips to help you out:
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Making The Relationship Work
The list I had listed jealousy, but with PD it’s more the root of jealousy – insecurity. Sometimes I think, “Will you leave me when I can’t give you what I used to?” I wish I knew how to approach this other than to talk openly with each other and trained counselors often. Somethings you just can’t go alone. Also, I don’t want to single out posts on this website, but all too many people ended up here.
For caregivers, I would list burnout and the inability to help. Having PD is a cruddy experience. It’s not easy to handle some of our issues. To be honest, I don’t like handling some of my own issues.
Some caregivers can’t get past the loss of function in a loved one. Other people feel like the things they try don’t work or they feel at a loss since the person with Parkinson’s still regresses. Still, others will help to the point that they subtract from their own state of wellness. I get these as opposed to outright abandonment that comes from the ‘I didn’t sign up for this’ mindset when the caregiver is not even trying.
That said, every caregiver needs to find their own way through this. Who am I to tell you what your own answer is?
Talk to each other, family, friends, therapists, and support groups. We need you and appreciate you because we know you’re giving it your all. We want the best for you, too, because we love and care for you in the same way you care for us.
Join A Caregiver Support Group
All too often, when one person has Parkinsons disease, the partner becomes a caregiver whose own needs can be shunted to the side, which can damage his or her health and the vitality of the relationship.
Be sure you recognize feelings of frustration or anxiety early on, and seek either professional counseling or a support group before those issues become unmanageable. Ask your doctor or doctors office for referrals to local support groups for families, couples and/or caregivers.
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Being In A Relationship
Weve met many couples and families who say that coping with Parkinsons together has made their relationships stronger.
But some people find that Parkinsons does affect their relationships, and this can happen at any stage of the condition.
Parkinsons may affect your self-image, mood and how you communicate with others. This may happen if youre in a casual or committed relationship, or if youre single. Some people have relationship issues in the early days, when theyre adjusting to diagnosis, while others may run into problems after many years of living with Parkinsons.
Each person with Parkinsons has their own experience of the condition. The symptoms you have may be different from other people. Its important to remember that many people go through sexual and relationship issues at some stage in their life, so any problems you have may have nothing to do with Parkinsons at all.
Give Him Some Space/what He Needs
When he left, I just wanted to talk to him. I wanted to explain and he didnt want to hear it. I think that respecting his needs right now is going to be super important in earning his forgiveness.
I dont want to push him. Trying to force him when he has made it clear he wants some time and space would be selfish of me.
Im going to try my hardest to work to his time frame and allow him to guide the next steps for us.
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Build A New Rapport And Connection
Then, at this point, what you should do is find a way to rapport and connect with them again.
But how can I build the rapport and connection back? You asked.
Well, nothing its easy, but since youre working to fix your marriage back, ask for a hangout, when he or she agrees to go out with you, remember that this is not the right time to start pointing fingers at each other, no, dont do that.
This is time to discuss each others likes and dislikes.
If possible, this time try to set up new rules in your marriage, and then listen more to your partner to know exactly what they want too.
See if it matches with yours because according to a specialist, Ph.D., Dumbroff, he says that having the same life goals is the right key to building a foundation for a new life together.
Though it may not be easy at first, since you have decided to fix your marriage, youve to put in more effort to make sure things work out for you no matter how long it will take.
How Do Impulse Control Disorders Impact People Living With Parkinsons And Their Care Partners
ICDs have the potential to reduce the quality of life for the person with Parkinsons and their care partner. In some of the more severe cases, it can cause financial ruin, divorce, loss of employment and increased health risks.
ICDs can cause people to feel shameful, embarrassed and weak. They may lie to hide their addictions, act in secrecy and withdraw from their care partner or family members for fear of being found out.
In some instances, someone who has developed an ICD must also reconcile the fact that they get some level of satisfaction and pleasure from their addiction, even though it could be wreaking havoc on their lives and their most important relationships.
We spoke to another woman whose husband had become a compulsive spender, put them in significant debt and refused to get help. It was the end of their marriage and many of the other dreams they once had. Thats an extreme example for sure, but its not an impossible scenario if ICDs are left unreported and untreated.
Fortunately, being knowledgeable about ICDs, risk factors and causes is an essential step for minimizing the impact on daily life.
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Expect Stages Of Grief
Of course, those who love and those who have invested in you may react initially with grief, anger, and disappointment. Those stages, however, should not continue indefinitely. Your loved ones need to learn that you are still you and that the relationship can still go on.
Over time, as your Parkinsons disease progresses, your contribution to the relationship will change or may even diminish, but that is entirely understandable. Even relationships among healthy people undergo dramatic changes over the course of the years. Why should a relationship with someone who has Parkinsons be any different?
In short, people around you need to come to terms with your disease and its implications for the relationship. Once they do so, the relationship will grow and may even nourish both of you just as it always had done.
The work your friends and family must do after you receive the diagnosis is clear: They must come to terms with your condition and learn that you are still the same old you. Those close to you must further decide how involved they can be in your care when you need help.
The work you must do on all of your relationships is different. You must learn how to maintain your relationships despite being relentlessly pursued by your disease. Each relationship will require a different set of responses from you in order to maintain it and to keep it healthy.
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Stop Beating Myself Up
I feel like a very shitty person right now. Of course, thats totally normal but I started to think about how self-indulgent that kind of is too.
The irony is, that by painting myself as the bad guy Im still putting myself in victim mode beating myself up and feeling bad, rather than taking full responsibility for what I have done.
Just like any chance of him forgiving me will take time, I think forgiving myself will too. But I want to try.
Yes, I made a mistake but I am not a terrible person and Im going to need the best mindset possible if I want to heal my marriage.
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The Impossible Choice That Destroyed Me And My Marriage
By Helen Hignett for DivorcedMoms.com
I stood there, not knowing what to say, with thousands of thoughts racing through my head.
Did he really just say that? Did I hear him right? No, he wouldn’t. Yes, he did! And in the blink of an eye my world fell apart. I was given an impossible choice to make that would end my marriage either way.
It all started on a Friday morning in June 2013. I recently had some routine blood tests done at the doctor’s office when I received a telephone call that would change my life.
The doctor congratulated me on my pregnancy and informed me I would need to book an early pregnancy assessment due to my previous pregnancy history. I was delighted but nervous as we hadn’t planned this pregnancy.
I told my husband the wonderful news and I could tell immediately by the look on his face he wasn’t happy. He told me he didn’t want the baby, he didn’t want to talk about it, and I was not to tell anyone. My heart sank.
We drove to our friends in Scotland as planned and spent the weekend. We didn’t discuss the pregnancy and the weekend was a struggle both physically and emotionally.
Days went by and he didn’t want to talk about it. We argued like never before and then one day, two weeks after the telephone call, my world fell apart.
I felt like my heart had just been ripped out of my chest. How can I make this choice? How could he put me in this situation, knowing how devastating the loss of my two previous pregnancies had been?
Apologies To Your Partner If You Hurt Them
This is one of the easy ways to fix your ruined marriage back to normal.
Some people find it difficult to say the words Im sorry please forgive me even when theyre sure they offended their partner.
Dont follow that selfish path.
You can initiate the journey to fix your marriage today no matter how far you have traveled in the path of bitterness, only if you can just mellow down your ego and ask for true forgiveness.
Remember the tone to tender your apologies matters a lot, dont act arrogant, use a calm tone and everything will fall in place naturally, if not it may take longer than expected for your marriage to be fixed.
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Impulse Control Disorders And Parkinsons: What They Are And How To Manage Them
Impulse Control Disorders including compulsive gambling, sexual behaviors, buying and eating are common in people with Parkinsons who also take dopamine agonists , drugs used to treat the symptoms of Parkinsons.
In one study, 411 people diagnosed with Parkinsons were followed for five years. During that time, the risk of developing ICDs for those who took dopamine agonists was 52%. The risk of developing ICDs was only 12% for those who had never been exposed to them.
Because ICDs can be common in people with Parkinsons and have a profound effect on quality of life, its important to become more educated about them and how they may affect the goal of living well.
Relationships And Family Life
Whether you have Parkinsons or care for someone with the condition, Parkinsons may affect your relationships. This can happen at any stage throughout the progression of the condition. Relationships between partners or family members, including children and grandchildren, are those most likely to be affected.
While not everyone with Parkinsons will find that their relationships are affected, the condition can affect mood, self-image and communication with others.
Differing reactions and expectations following diagnosis and throughout your Parkinsons journey can also have an impact. Some people have relationship issues when theyre adjusting to diagnosis, while others may run into problems after many years.
This section covers:
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Be Honest And Build Trust Back
During these few days of problems in your marriage, your partner may have lost trust in you.
Hence, if youre planning to fix your marriage back with him or her, you should, first of all, try to be honest with them to help build trust back in your marriage because theres no way your partner will accept you if they lack trust for you.
Know that trust is a two-way street, you need to have the ability to trust yourself and then, make amends for them to trust you too.
Sure, its not going to be so easy to build trust back after misunderstandings in marriage, but you should try your best to be trustworthy to your partner.
To build trust you have to be honest this time, dont lie when confronted with anything, and make sure you maintain truthfulness to be able to fix your marriage fast.
Is It Normal To Fall Out Of Love With Your Spouse
I am the caregiver for my husband who has dementia. Ive been caring for him for 3 years. He doesnt talk to me unless I say something to him he only gives a quick answer. There is no conversation. I feel like I live with a dead person. I dont like him and Im not in love with him anymore. I think I have emotionally divorced him. Is this normal?
-Deb
Deb, please rest assured that your feelings and emotions are actually not only common, but normal. As dementia progresses, the person who is faced with caring for a loved one changing daily into someone they no longer recognize must live with, care for, love, try to communicate with and be on call 24/7 for a person who can now be a complete stranger to them.
Yes it is normal, but the one thing to keep in mind is you will survive this very difficult time and must live with the choices and decisions you make now. That being said, you must also do what you need to do to survive each day as best you can. Do you have a support group? The Alzheimers Association in your area should be able to provide you with a group or a local church may offer one as well. If possible, talk to your clergy, a counselor or someone you trust and can be open and honest with. Exercise is also a great way to help yourself and if you are not already, try to start a routine that includes some sort of physical activity Take care and stay strong.
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