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My Parkinson's life is so confusing - this is not easy.
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?
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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. .
Thank you! Most helpful. We will definitely look into it.
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1 ReactionHello @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?
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?
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
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1 ReactionHi 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.
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5 ReactionsTake it from a non PD person, working in the yard isn't easy even if one doesn't have PD. I'm 87 and my dad had PD, so I know of what you speak.
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2 ReactionsHello @dodeebug, and welcome to the Parkinson's support group on Mayo Connect. I see that PD is a recent diagnosis for you. If you care to share more, what symptoms led to this diagnosis? Were you having problems with balance, gait, or difficulty walking?
If you have been prescribed meds, have they been helpful? I'm also wondering if you have been referred for physical therapy? Regular physical exercise, along with medication, is important for all PD patients.
I look forward to hearing from you again. Will you post updates as it is convenient for you?
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2 ReactionsNoticed the use of Tramadol. I was on Tramadol but had to get off a few weeks before knee replacement surgery. After being off of it, I noticed that my brain fog and difficulty with word search had some improvement. If you struggle in these areas you may want to try a different pain med.
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2 ReactionsHi thanks for taking time to read about me and PD.
I am taking carbilevadopa and is helps with my left hand tremors.
I had no idea that i had PD. I go to a nerurologist fir Restless Legs and neuropathy in my feet. I take Ropinitrole for those problems.
Last year i woke up with my left leg numb and left hand was paralized. I called my docor and he thought i was hsving a stroke and told me to go immediately to hospital. I was given all kinds of test and after 3 days was told it was a nerve in my neck.
Going for my appointment for my legs doctor said no it was a stroke. I went for hand theraphy. My hand works now but much slower. And i have a limp.
I use a cane fot stability and if i take walks i use my walker.
I have not had a problem with falling but can no longer walk my dog. This i really miss as he a wonderful Border Collie mix.
Oh and i started having urinary problems wich i just blamed on old age. My primary doctor gave me a pill to help. Now i have read that more than likely it is csused by PD I use pads and remind myself to go to the bathroom about every hour. I'm sure thinking back i have had PD for sometime. I can't believe all the tests i have gone thru.
I also started going to a counselor to relieve some stress.
Hope all is good with you.
Regards a fellow PD
Caroline
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