1. < Parkinson's Disease

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

Posted by johnnyvsn @johnnyvsn, Oct 27, 2024

I was officially diagnosed with Parkinson's May of 2019. I have been taking Rytary since diagnosis and can say it really does help me feel "normal", but just for windows of time. Sometimes the windows lasts a very short time, sometimes longer. I am not as sharp minded as I used to be. I just don't understand how my body can feel so bad a lot of the time, then feel normal at other times. Does anyone else struggle with accepting this as just the normal life of a Parkinson's sufferer?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

ethel2017 | @ethel2017 | 20 hours ago
In reply to @eojeda1 "I think that finding the right regimen helps. My husband too has PD. Since his diagnosis..." + (show)
@eojeda1

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!

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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. .

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eojeda1 | @eojeda1 | 20 hours ago

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

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 20 hours ago
In reply to @21amy "I thought that I would send an update on Inbrija Inhaler that I am trying. I..." + (show)
@21amy

I thought that I would send an update on Inbrija Inhaler that I am trying. I have been having a lot of freezing lately and the inhaler is helpful at times but also not always helpful. It seems that is the way it is with PD. What works one time doesn’t work the next. I would say it helps 60% of the time. It does help fast, within minutes, so that is great when my freezing is really bad and I am struggling to just stay upright. I wish I had more consistent results with it, but for me it is worth trying when my Rytary is not doing its job. It is a little tricky to get the hang of how to use it. Make sure you inhale slowly and gently to decrease your coughing. Have a glass of water next to you so you can take a sip when your cough starts. Let me know if you have any questions.

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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?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 20 hours ago
In reply to @eliz722 "I was dx w/PD 2021. I am sure I had it longer but disregarded the early..." + (show)
@eliz722

I was dx w/PD 2021. I am sure I had it longer but disregarded the early non-motor symptoms. I too take a lot of meds. I spend a lot of my time filling pill boxes, dealing w/insurance & physical therapy companies. I am now contacting home health care companies.
I will be starting Apokyn in about 1 week. Any comments abouut it? I have not been on Rytary
Would the person who will be starting Medical marijuana post what type they take& their pro's and cons on it. I am considering using it to reduce stress. My doctor's like the idea of medical marijuana vs taking a prescription medicine. The psychiatrist consdier it "more natural" She finally said to take the CBD w/o the THC. One of my issues w/it is that I can't just take it when I am stressed. I am not going to start it until I have been on the Apokyn for a while. Responses are appreciated

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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?

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