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

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 This was a smart, vital, Type A guy who has become withdrawn and socially isolated.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.

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.

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 Your husband may be withdrawn as he struggles with the diagnosis.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

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 Joe,
You and your wife have made such a good adjustment. It’s inspiring! What you suggested makes a lot of sense. I think, on some level, we’re still adjusting to his DX. I’d like to have a dialogue about our future but Stan isn’t ready yet. I have booked an appointment with a neuropsychologist but could not get an appointment sooner than March. I tried three different people,March for all f them. Thank you for taking the time to write and sharing your wisdom.

So good to hear from you again, @janetgeller9. The plans you have are good. This is a difficult diagnosis and I can understand being overwhelmed. Keep learning all you can.

The Davis Phinney Foundation has many teaching videos regarding PD. Some of these videos are by professionals and many by PD patients, some of whom are also PD patients. I would encourage you to view the videos. It will give you a good background for dealing with this unwelcome disease. (https://davisphinneyfoundation.org/webinars/).

The organization also has a YouTube channel with webinars, https://www.youtube.com/results?search_query=davis+phinney+webinars

I look forward to hearing from you as you have questions and concerns.

Hi Joe,
You and your wife have made such a good adjustment. It’s inspiring! What you suggested makes a lot of sense. I think, on some level, we’re still adjusting to his DX. I’d like to have a dialogue about our future but Stan isn’t ready yet. I have booked an appointment with a neuropsychologist but could not get an appointment sooner than March. I tried three different people,March for all f them. Thank you for taking the time to write and sharing your wisdom.

Hello @jflamini,

I find it so encouraging to read your reply to @janetgeller9. Your post describes all of the ways you and your wife have adjusted to this "new normal" in your lives.

Your determination to maintain physical conditioning is important. It has been said that exercise is an important adjunct to medication in slowing the disabilities of PD. I also follow some chair yoga programs on YouTube which hacw been very beneficial to me.

You mention that your movement disorder specialist has prescribed a sophisticated drug regimen. Do you mind sharing more about the medications that have been helpful to you? What are the most troublesome symptoms you and your wife experience now?