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

Hello @bvoelschow and welcome to Mayo Clinic Connect. I think you ask a very important question knowing his exposure. I am curious if you shared this concern/background with the neurologist who diagnosed your husband? If so, what was shared with you?

I was able to find a member who had posted about this same connection and concern. I am hoping that @robjohn may come back to share more with you about this connection for him and what he has learned.

Does your husband recognize this connection as a potential concern?

My husband was recently diagnosed with Parkinsons. He's had tremors, balance issue, trouble with words, temper/frustration, and has been in denial for 3+ years. He worked in an anhydrous ammonia fertilizer plant for many years, where they stored, loaded and unloaded anhydrous. There were times he'd come home from work and when kissing him, and I could taste the chemicals on his lips. I would insist he go take another shower, even though he took one before leaving the plant. Could there be a connection between anhydrous and Parkinsons? Thank you for any information you can provide.

My wife's neurologist believes a Duoma approach to curb her symptoms is the way to go. I see it as a drastic approach and wonder if others have experienced going this route and what they can say about it.
Phil

She is currently seeing an abnormal movement neurologist that is not a surgeon but he works in conjunction with a surgeon that specializes in dbs. A month a go they recommended that my sister takes a psychological profile test but she has not gotten the results. They said that was important to see if she could be a candidate for dbs

Hello @lishensasha and welcome to Mayo Clinic Connect. First, it is so great that you are helping your sister by joining this community.

While I wasn't able to locate any current members who have shared their experience with both rigidity/dystonia and DBS, I did find a resource that may be helpful as you explore this as an option for your sister's care.

- Deep brain stimulation: Precision using segmented leads:
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/deep-brain-stimulation-precision-using-segmented-leads/VID-20457940
Does your sister's doctor specialize in DBS treatments?

Hello,

My sister Sasha was diagnosed with PD 4 years ago but has deteriorated rapidly. She suffers from extreme rigidness and her speech had been greatly affected. She is using rotigotine patches called nubrenza and madopar 100 levodopa cardivopa 5 times a day 2 pills every day. We are now looking into dbs but her dr says since her pd has been affecting more her nervous system and speech it is uncertain on the benefits she will get.

Any patiens out there with rigid pd that have benefitted from dbs

@telios
Hello Phil,

I'm pleased to learn a little more about your wife's health difficulties. As she was just diagnosed 2 years ago, she will have a lot to learn about dealing with this disorder. Is there a PD support group that she might attend virtually? Often hospitals will provide such a support group. If she could meet with others who have PD she would undoubtedly find she is not alone and would adjust to this complicated health issue.

Regarding the constipation issue, fiber supplements and Miralax products need to be used on a daily basis in order to keep the problem from becoming chronic. I'm glad that she has been addressing the pelvic floor disorder. That can be very helpful as well.

I hope that your wife is also active and that she has some exercises that she enjoys. This is important in order to delay the progression of PD as well as to deal with constipation. There are many seated exercise videos on Youtube that can be accessed free of charge and used when she has the time and energy. Exercise is just wonderful for all aspects of PD.

The Davis Phinney Foundation offers some very good information about PD. If you sign up on their website you will get emails with very helpful information. Here is that website, https://davisphinneyfoundation.org/.

I enjoy hearing from those members who have PD. We are really better together. I hope you will keep me informed as to how she is doing. Will you post updates as you are able?

Thanks Teresa:

Ann was diagnosed with PD 2 yrs ago. Her GI doc prescribed Amatiza 24 oz for her pelvic floor dysfunction. (Ann doesn't feel the Amatiza works) She has met with a PT specialist who claims her bowels are quite normal and suggests specific exercises with hot pad on stomach. The hot pad helps to abate the spasms.

She's tried a variety of fiber supps, such as Metamusil, Miralax and isn't sure how well they work. She now tries Benefiber to see how it will work.

Your suggested links are terrific. Thank you much.
Phil

I'm so glad that you will be able to see your neurologist next week. I hope that he/she is able to help you with the tremors. I've not had that particular problem, but I know that it can be exhausting.

Are you living in a large area where there might be some clinical trials being done for PD? I live in SE Michigan near the University of Michigan hospital and they are doing clinical trials on new meds all the time. If you live near a large medical center such as a university medical school, it might be worthwhile to sign up for a PD clinical trial. If you would like to see what clinical trials are available to PD, here is a website where you can check to see if there are any near you, https://clinicaltrials.gov/.

I do wish you well. I would enjoy hearing from another PD member on Connect, so I hope you keep in touch. Will you post again with any thoughts and concerns (especially after your appointment next week)?

Hello again, the most bothersome symptom is off times, tremor is in all parts of my body. I haven’t seen my neurologist properly since the pandemic started so hopefully next week I will and he will give me a solution.