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

Hi Teresa -- My dad had a tremor in left hand/arm that became more pronounced (he had had a slight tremor in his jaw as well), so his GP sent him to a neurologist. He started to have balance issues and had to give up his beloved Chuck Taylor high-tops (at 88!) for sturdier shoes. His symptoms progressed fairly slowly. He began taking carbidopa/levodopa, but unfortunately he had a terrible neurologist who was not good at monitoring and following up on medication dosages. At one point he was so over-medicated that in a period of two weeks he became unable to walk and was experiencing strong hallucinations. I promptly got him to a different doctor who greatly reduced the c/l and my dad became himself again. It was a horrible experience.

My dad needed to move to assisted living at that point. A year ago I moved him to Texas to be near me, and he is doing pretty well but his speech is very mushy (in spite of speech therapy), his manual dexterity is very poor, and he spends part of the time in his wheelchair, using a walker the rest of the time.. We got a Parkinson's specialist in Houston and she has worked very hard to get a good dosage of c/l for him, trying different amounts and working on the optimum spacing between doses. He takes a mix of instant release and continuous release c/l, and a 4mg Neupro patch. He also gets physical and occupational therapy for periods when needed.

One of his biggest challenges has been anxiety, a major symptom of Parkinson's that is overlooked and minimized since it isn't a visible physical symptom. It is managed with lorazepam (Ativan). Managing all of the medications that a 94-year-old takes is challenging!

Thanks for your interest!

@betsyp Hello and welcome to the Parkinson's discussion on Mayo Clinic Connect,

I am sorry to hear of your dad's recent diagnosis of PD as well as his current problem with mild delusions. It must be heartbreaking not to be able to be with him at this time.

If you are comfortable sharing more, could you share what symptoms led to your dad's diagnosis of PD at age 88? Was it walking problems, falls, speech, etc.? Is he currently taking carbidopa/levodopa?

My 94-year-old father has Parkinson's -- late onset -- he wasn't diagnosed until he was 88. He is in an assisted-living facility, and I am his primary caregiver. COVID-19 has caused facilities to make some hard decisions; family members can't enter the facility my dad is in. It is so difficult not be able to help him with all kinds of tasks of daily living, knowing that he is lonely and I am missing what may be my last years/months with him. My dad has begun to have mild hallucinations which don't seem to be medication related as there have been no changes to his medication. One doctor recommended Nuplazid, but his neurologist doesn't think it is necessary yet. Does anyone have experiences with this drug?

@stephenmcelroy Hello Stephen,

As it has been a while since you last posted about your Parkinson's diagnosis I was wondering how you are doing. How are you feeling? Are you involved in any specific treatments?

I hope you will post again, I would like to hear from you.

First, let me send BIG KUDOS to SallyK....what a jewel! Update on me: after being diagnosed with PD and starting researching/reading everything I could find (starting Azilect), etc., I decided to visit a Parkinson’s specialist for second opinion! Glory be, he says I don’t have it and can stop the medicine....music to my ears!!! Praying he is right. He has dealt with only Parkinson’s cases for 25 years. He says lots of afflictions cause the same symptoms....which makes it easy to just diagnose PD.

Hello @stephenmcelroy
It has been a while since you last posted about your PD diagnosis. How are you doing? I hope by now you have found a neurologist who is helpful to you. I would enjoy having an update from you.

Hello @sallyk and welcome to Mayo Connect! How wonderful that your newly diagnosed friend has someone to support her on this journey with PD. If I could make some suggestions for you, look into PD exercises classes in your area. Most classes are now online because of COVID-19 crisis. Here is a link to the MPF exercises, https://www.parkinsonsmi.org/mpf-programs/exercise-and-movement-activities

If you spend time with her, just turn on the exercises and watch them. Exercise and medicines for PD are the optimal combinations!

You might also see if there are PD support groups. Many now have meetings on Zoom. She can be anonymous by not showing her picture and not participating if that is more comfortable for her. She can learn much from hearing others talk about PD. Youtube also has lots of videos with information about PD as well as exercise classes. Here is a link for those,

What symptoms seem to be the worst for your friend now?

Good morning ... my friend has Parkinson’s and I am her “friend caregiver”. She is a private person, single, and no family members living in the area. I care for her and don’t know how to help when she is struggling. She doesn’t share much about her challenges. My hope is that this group might provide me insightS.

Thank-you so much.....this is very helpful and encouraging! 😘

Well, #psvantx, looks like we both got some good news yesterday. I had my regular 90 day check and no changes to meds are needed. Doc says I should make 20 more years. Being 74 now, that seems a little ambitious.
As to why your last few visits seemed contradictory, the disease is so different to each of us that figuring out what any one symptom is caused by and best treated by what is a real moving target.
For example, my dizziness turns out to be simple low blood pressure and can be fixed by raising the head of my bed 2 inches and adding a pinch of salt to dinner. And exercise is god for PD and most every thing else. After all, if part of the problem is junk in the brain, you need more blood flow.
Even diagnosing it is tricky, I had really expensive Executive Physicals in Houston’s best hospitals annually for 9 years with many of the classic symptoms and no one caught it until I gave in to the symptoms and retired to a mid-sized Texas town and in my first visit to a PA was diagnosed by him just watching me sit for a few minutes.
So, hope you have a great New Year and maybe I’ll see you down the road.