Trying to Cope with Parkinson's and a Husband Who Has Dementia

By nell

1 min read

It’s very hard at times, I love my husband dearly, but it’s getting more difficult for me.

Swinging and swaying

I have had Parkinson's for more than 15 yrs and I have been lucky until lately. Not had too many of the side effects, mind you I take a lot of medication, but for last few months I have been swinging and swaying a lot and it feels embarrassing at times.

I’m not sure what if anything I can do about it.... Anyone have ideas? I hope I can find some help. Thanks.

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Lorraine Wilson Member
Hi <inline-mention username="nell" user-id="3058546"/>, I am glad you shared your story. You may have already asked your doctor about the movements you are experiencing, which may be dyskinesia related to your meds. If not, then maybe you can make an appointment to let the doctor know what is going on. I find it helps me to use “big” movements for at least five to ten minutes to feel some calm. Mindful and deliberate arm swings or backward arm circles (even if shaky and erratic!) help. I also tackle chores like cleaning a sink, sweeping the floor or raking leaves. I know what you mean about feeling embarrassed at times, but hope you can stop worrying about that. Warm regards, Lorraine, Parkinson’sdisease.net moderator 
1. Marc Mitnick Member
 <inline-mention username="Lorraine Wilson" user-id="3097511"/>Nell, your story is informative. Big exaggerated movements through physical exercise is important. When walking, take big steps while alternating your arm swing is recommended by physical therapists. For example, stepping with your left foot, swing your right arm forward and then repeat with your right foot/left arm. This technique assists with gait and balance. Research <a href='https://www.lsvtbig.com' target='_blank' rel='noopener noreferrer ugc'>www.lsvtbig.com</a> on the internet or <a href='https://www.youtube.com' target='_blank' rel='noopener noreferrer ugc'>www.youtube.com</a>
nell Member
Thank you. Does not seem to be much that helps the swings an swats swinging by
Swomack Member
Sometimes my arm really swings and I walk like a gimp. I just tell everyone " My pills must be wearing off. I have Parkinsons." Most people are understanding. You have a desease. Let them in on it iff they give you funny looks. I've seen several men walking the Parkinsons walk and have suggested they see their doctor. Most don't know they have Parkimsons and can be helped. 
1. Marc Mitnick Member
 <inline-mention username="Swomack" user-id="4136367"/> Thanks for your comment, Swomack. Compassionately approaching strangers concerning your observations of their walking though, may be risky. Be careful! Being upfront about yourself and letting them comprehend why you walk with a modified gait pattern is commendable. Hopefully, that will end the funny looks. Way to go! Marc M., ParkinsonsDisease.Net, Moderator
Caring Faye Member
Hi Nell, your neurologist should see you in person or virtually to assess your movement disorder. I have developed similar erratic movements which are called Dystonia (a form of Dyskanesia aka side effect of my one Parkinson med that is managing all my PD symptoms). In my case, the movements are not interfering with my life but everyone is different. If the movements interfere with your daily life's activities, one option I've been given is a Botox injection into the muscle that's firing abnormally to temporarily numb it; this shot's effect lasts only up to 3 months so you need to go back and get the shot again every 3 months until you get tired of it and stop! As I mentioned, everyone is different so you need to be assessed medically by your neurologist who will offer you options. You are also under a lot of stress taking care of your husband and the more you commit to the care-giving job, the less time you are spending on your treatment which isn't helpful to you! Does your insurance include home healthcare? If not, the hospice companies can offer daily home health services free of charge depending on how advanced your husband's dementia is. I would definitely seek help from one or the other asap because if you continue giving care when you are needing daily assistance for yourself, you won't be able to sustain your level of care giving for long ! Then both of you will lose! I know this from experience because I was taking care of my 94 year old mother and my Parkinson symptoms were getting worst! I finally saw the light and now my mother is taken better care than I was ever able to offer her at a comfortable apartment and I have more time to exercise and my Parkinson's symptoms are practically non-existent ! Good luck Nell. Don't lose hope and keep looking for the best solution for your situation. 
1. Caring Faye Member
 <inline-mention username="Marc Mitnick" user-id="3083283"/> I appreciate it. Caregiving is a an emotionally taxing full time job which is not recognized enough by the population at large so every chance I get, I try to do my share of thanking them & recognizing their selflessness! Enjoy your day
2. Suzanne Troy Member
 Hello Mark and Caring Faye, Just adding my two cents: my mother (age 85) is the pimary caregiver for my father with PD and dementia (age 86). My mother has a list of health issues including a bad back. I help out when I can but it has been more challenging and emotional for me to take care of my own father and for my mother too. We have hired part time caregivers in the last four months and my dad goes to an adult day service one to two days a week. This has been a huge help to all of us. My dad is thriving and my mom is getting out of the house now. Blessings on your day, Suzanne Troy, Moderator, <a href='https://parkinsonsdisease.net' target='_blank'>ParkinsonsDisease.net</a>
nell Member
Thank you for your input I will se if I can get some other help.
Suzanne Troy Member
Another thought is to reach out to your neurologist's office. They may have a social worker on staff that are a wealth of knowledge to help you map out your care plan or that of your loved one. They often have a list of resources that help you get the right care and help you manage the emotions/stress that go along with living with PD. Good luck and let us know if you need any other help. Suzanne Troy, Moderator, <a href='https://parkinsonsdisease.net' target='_blank'>ParkinsonsDisease.net</a>
Suzanne Troy Member
Hi Nell, Checking in to see how and your husband are doing? Were you able to get some help? Happy Thanksgiving to you! Please let us know how you are doing. Take care, Suzanne Troy