Living with Parkinson's Disease - Meet others & come say hi

Teresa, first, my background and then a few thoughts. My wife has had PD for 15 years and I have functioned as a care giver. Two and a half years ago I was also diagnosed with PD at the age of 68. I am also a type A personality who just retired as a hospital administrator for 35 years.

I have adopted my wife's philosophy to accept the diagnosis and make the best of it. Instead of waiting for the storm to pass I will learn to dance in the rain. Your husband may be withdrawn as he struggles with the diagnosis. He must decide how he wants to live the rest of his life. My wife said she can be miserable but she will still have PD so she has accepted the diagnosis and has moved on to live her life in the bast manner possible. Next, he must get the best care available with the latest treatments. We both see a movement disorder specialist, not just a neurologist, who has prescribed a sophisticated drug regiment. Five years ago my wife had DBS surgery which improved her functioning significantly. We maintain purpose in our lives including participating in fund raising activities for PD. We have accepted that we will no longer bike 50 miles in a day but we have maintained new goals for daily exercise which is keeping both of us active.

You would do better with an extended family of friends to support you both whether that is a PD support group or another group to keep you engaged. For example, we participate in a yoga group on zoom which is helpful even though remote. Some of the poor judgement may be the result of being distracted by the diagnosis and trying to take dramatic steps to make improvements such as financial decisions. Good discussions and joint planning may help you both set a road map for the future which provides your husband with a little more sense of control in his life which he probably needs.

Let me know if I can answer any questions. Best wishes in your journey, Joe

Hi Teresa,
I’m talking virtually to a social worker every 2 weeks. She doesn’t have a speciality in Parkinson’s but offers an outlet for me. I applied to my local senior services sponsored by the Department of Aging for someone to talk to. Stan sees a PT 2X a week who is helping him with balance issues. He, too, doesn’t specialize in PT but has been helpful with balance issues. I’ll follow up on your suggestion for a movement disorder specialist or neuropsychologist. He has not been evaluated by a neuropsychologist. Thanks. This information is very helpful-I’m somewhat at sea re: resources.

Thanks for your reply, @janetgeller9. It sounds like you and your husband need some assistance dealing with the significant changes you are both experiencing. In your first post, you mentioned that you were a therapist, practicing part-time. As such, you probably understand how helpful it can be to talk with someone about the changes you are experiencing. Do you know of someone who might be able to help you?

Regarding your husband, I would recommend that he see a movement disorder specialist to discuss the cognitive and physical changes he is experiencing. Perhaps a neuropsychologist might be of help as well. Has your husband been evaluated by a neuropsychologist?

At the very least, a physical therapy program for your husband might be great for the physical problems. Some special physical therapists have special in Parkinson's. I would encourage you to contact his doctor and ask for a referral for PT.

PS-thank you for the links.

Hello Teresa, the most difficult adjustment is the loss. Everyday, I feel I’m losing more of him. This was a smart, vital, Type A guy who has become withdrawn and socially isolated. He goes to PT 2X a week, takes his meds and eats well. I think he may have had Parkinson’s for awhile that has gone undiagnosed because he has had/has trouble walking, looses balance, has falling issues, can’t open a jar that I can open,etc. I lost my big strong guy. More upsetting to me is his cognitive changes, poor judgement, non-verbal. I feel very alone. Friends, family don’t live near us anymore. It’s just he and I-no kids. And now it’s not even him. I could go on forever, perhaps. I need community and connection that is absent right now. Also, based on his poor judgement, practically every day he creates some problem that shocks me and then I have to fix it. That partially answers your question but there’s so much more.

Hello @janetgeller9

I also welcome you to the PD support group on Mayo Connect. A Parkinson's diagnosis is hard to accept. This is true for the patient as well as the caregiver. I see you are looking for a support group or a Zoom group.

Here is a link from the National Parkinson's Foundation with information about support in your area, https://www.parkinson.org/resources-support. Just click on "In Your Area" and you can find groups nearby.

On Connect, we have a Caregivers Support Group which might be helpful to you. Here is a link to those discussions, https://connect.mayoclinic.org/group/caregivers/

What is the most difficult adjustment for you right now?

Have you checked your area Rec Centers, Y’s or Parkinson's Associations? My husband attends Parkinson's Boxing at our Rec Center and in addition to the exercise regularly gets to meet others and their care partners. It’s a big help to him. I’m sorry you’re going through this.

Thank you as well. I think it helps reduce the stress that comes with this overwhelming situation and know other's care. Hugs!

Thank you for your compassionate and welcoming remarks. Yes, I was taken aback as Stan(my husband) has always been a physically strong, sharp brained guy. The change is overwhelming and very sad to me. I feel a great loss has occurred which I'm having difficulty coping with. I’m disappointed that, so far, I haven’t found a support group in person or second best-Zoom. I want to see others but for now, I’m grateful for this platform and your kind words. You, yourself have quite a handful to bear. I feel for you too.

Hello! Welcome to the group @janetgeller9. I am sure you were taken aback when you found out about your spouse's diagnosis. My heart goes out to you. It is a hard pill to swallow. My spouse has had Parkinsons for quite some time. He has other health conditions which make it a hard journey even harder. That being said..we talk to one another on this site. It depends where you live as far as in person support groups. Check with your local YMCA. That is where we began. I find this site and the Parkinsons Association has lots of information. I have researched every place I can find. My main reason for that is my Dad, brother and of course my spouse have Parkinsons. My Dad died in 2018. My spouse was diagnosed 12 days later. Hugs!