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

Hi, I have been diagnosed for almost 1 year . It has been the worst year ever. I had a hard time accepting the diagnosis and was diagnosed late, so have been playing catch up. I read about Parkinson's patients having good days.. Do they ever come??

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.

Would love to share our drug regiment. I am early in my diagnosis to I take 25/100 Carbidopa-levodopa two to three times a day as needed. My wife's regiment is more sophisticated as follows:

Carbidopa-levodopa 25/100 MG four times per day
Entacopone 200 MG two times per day to enhance the Carbidopa
Mirapex 1 MG Once per day to enhance Carbidopa
Selegiline 5 MG Twice per day to enhance Carbidopa
Gocovri (formerly Amantadine) 137 MG Two capsules per day for dyskinesia
Apoken (Apomorphine HCI) 30 MG Injection for freezing as needed
Trazodone 50 MG Two tablets sat night to sleep
Vitamin C 100 MG
Vitamin D3 50 MCG

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?

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.

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