My Parkinson's life is so confusing - this is not easy.

Hi I was just diagnosed with PD 2 months ago. I took care of my dad for the last 2yrs of his life with his PD. So I am well aware what I have to look forward to. It is difficult because I have always loved working in the yard, sewing, painting and working out. Gave my bike away afraid of falling. Now use walker for my longer walks. Use cane for shopping. Ok getting around house just have limp. Hurts me to talk to people as some words just escape me. I just want to stay home but I know that is not good. Thank goodness I have a wonderful hubby that cares deeply for me.
I should tell you I am 88yrs young. Have cried many time. Prayed lots.

I can really identify with your comments! It is confusing & frustrating & impossible to explain to others I am grateful for the times that I feel "normal" - or nearly normal. I am also aware that I seem less "sharp" mentally. I am used to being the smartest kid in the room,...but, sadly, no more.....................It is good to share these things with other PDers, make me feel less alone

Hello @eliz722,

When you last posted, you were planning on beginning treatment with Apokyn. Have you started that already? If so, has it helped with your symptoms?

Hello @21amy,

When you last posted, you mentioned that the Inbrijia Inhaler was not always helpful. As it has been a while since you posted, I was wondering how you are doing with the episodes of freezing. Are you finding more consistent relief with the inhaler now?

Thank you! Most helpful. We will definitely look into it.

Your husband is so lucky to have you advocating for him. I too have Parkinsons and I am an advocate for Parkinsons Voice Project, a non-profit, out of Richardson, Texas. May I offer some advice about regaining and retaining his ability to speak and swallow. It is never too early to start SPEAK OUT! therapy. This is a program offered to people with PD for no charge. Please go to ParkinsonVoiceProject.org and find a Speech Language Pathologist trained in SPEAK OUT! Most of them offer virtual or in person treatment. A large percentage of people with PD will have speech or swallowing issues. If he is not having any problems he still needs to go through this program. Remember, there is no charge and no bills to your insurance. PVP is the only organization in the world to offer this program. It is proven to be affective. Listen to some testimonials on their website and see how they help people. .

Amen!!

I think that finding the right regimen helps. My husband too has PD. Since his diagnosis in Oct 2024, it has taken until now to find the right regimen of medications that work. My husband takes Ropinirole for PD and RLS, and he takes low dose Tramadol for pain. He backs this up with Ibuprofen and Tylenol when needed. He has improved with this regimen. All PD patients are different, and sometimes having to find the right thing that works for you is what is needed. Believe me, it has been frustrating for me and my husband, but I refused to give up and watch my husband suffer through it. I did the research and advocated for the changes with his doctors. Perhaps this is something that might work for you, but don't just accept what is as the last resort. See the changes, makes the changes and make it happen!

For those members of the PD support group, I would like to let you know about a webinar sponsored by the Davis Phinney Foundation on Friday, June 13. This month's webinar will explore the emotions and mental health issues that accompany a PD diagnosis. Here is a link to register for this webinar,
http://dpf.convio.net/site/MessageViewer?em_id=23243.0&dlv_id=32646&pgwrap=n
I would encourage you to register for this informative program. If you are not available to attend on the 13th, by registering you will receive a link to view the recording at a time more convenient for you.

Hello @katrii,

I'm so pleased to hear that your husband has been able to get some PT. Has it helped him to move better?
The importance of regular exercise has been proven to be valuable. If insurance or finances are a problem, you might check out the local YMCA in your area to see what exercise classes they might offer for PD patients, even chair exercise classes for seniors. Your local senior center may also provide exercise classes for seniors that would be helpful.

There are also YouTube vides with exercises for PD patients. The important thing is to keep moving. Here is a link to some exercises from YouTube. https://www.youtube.com/results?search_query=exercises+for+pd

There is also a book (and a video) called, Delay the Disease, which also talks about the value of exercise to lessen the disability that can come from PD.

Whether your husband continues with PD or finds an exercise program that he enjoys, it is important that he keeps moving. Will you post again and let me know how you are both doing?