Another newbie: Hi all. I've been following... - Cure Parkinson's

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Another newbie

boomermania profile image
18 Replies

Hi all.

I've been following this blog for a few months now. Thought I would say hello! I was diagnosed in Feb 2017. Had a twitching in my left thumb in early 2016. Didn't think much of it. Though it was a lingering bowling injury. Then late in the summer of 2016, it grew to a resting tremor in my left hand. I made an appointment with a neurologist early the following year. He put me on sinemet, and it helped my resting tremor. I'm currently on sinemet 25/100 4 x daily.

I've been getting along pretty well, but recently, I'm really having trouble focusing, staying on task and my cognitive skills have really diminished. I'm in sales and pretty proficient in Excel, Word, PowerPoint and, just generally, pretty computer literate. I've notice a significant decline in all these areas recently. Very frustrating! I find myself just staring at spreadsheets, and not being able to analyze or interpret the data. Not talking complicated stuff here... It's like I have a brain freeze, and don't know what to do!!!!

Also, I find myself searching for words when I'm in a conversation. (not good for someone in sales...) I assume, this is a part of the PD progressing.

I've recently joined a fitness club, and have started an aggressive exercise routine. I'm hoping this "staves" off the progression of PD. I really don't want to retire yet, but I'm concerned because I'm not performing at the level I had been.

I'm hoping others, that have had similar experiences, might share their thoughts.

No depression or anxiety.... it is what it is. I've been blessed my whole life. This won't take me down.

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boomermania profile image
boomermania
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18 Replies
Enidah profile image
Enidah

Thank you for sharing that. I've always thought if I could keep my wits about me I could deal with the physical side effects of this, whatever they may be. Your description of your cognitive functioning sounds mighty familiar. Keep us informed of whether or not the workouts make a noticeable difference. I hope so! That is certainly one of the reasons I keep pushing myself...hoping hoping.

boomermania profile image
boomermania in reply to Enidah

Thanks Enidah. I always feel great after a workout. You'd think that would make it easy to motivate myself to do the next workout. It doesn't. But, I'll keep trying.

Enidah profile image
Enidah in reply to boomermania

I'm with you! No matter how much I enjoye exercise it's still a chore to get myself to do it. I'm sitting here right now in my comfy chair watching TV knowing the whole time I need to get up and move. Darn!

Shaker33 profile image
Shaker33

Welcome and thank you for sharing. Sometimes it is hard to know what is from Parkinson’s disease and what could be a result of the medication and side effects. Also, there are some interactions with other medications that also could be causing the confusion. It is a great idea to continue with your exercise program and your gratefulness attitude is so important. I am 12 years into this. I take your exact dosage. It is hard to concentrate sometimes for sure.

boomermania profile image
boomermania in reply to Shaker33

Thanks for the welcome.

Motherfather profile image
Motherfather

yes boomer what ever you do keep doing exercising I do it 7 days a week,52 weeks a year . its hard sometimes but when you get pain keep going.or you will put your self in a lot of pain and suffering in the future..best of luck..also write down in a book what people tell you like what helps them ..pills etc etc you will soon get into the swing of it

Beckey profile image
Beckey

"I'm really having trouble focusing, staying on task and my cognitive skills have really diminished.

"Also, I find myself searching for words when I'm in a conversation. (not good for someone in sales...) I assume, this is a part of the PD progressing."

You're singing my song, Boomer! I wouldn't assume these are signs of PD progressing, though. They may very well have to do with your medication, and with the added fuel of anxiety.

I take dopa mucuna, a natural form of levadopa, 3 capsules 3 times a day. Before that I was taking sinemet and amantidine and having terrible troubles -- falling, hair falling out in bunches, inability to communicate verbally. I had to use a walker just to get around in my apartment. I lost 45 pounds -- and I was a shrimp to begin with.

When my regular neurologist said the sole cause was anxiety, the sole solution meditation, I saw another neurologist for a second opinion. He recommended that I cut my dose of amantidine in half. I also quit sinemet and started on dopa mucuna. Within a week I was close to being myself again. Then I quit amantidine entirely and Hallelujah! All those problems fell away and I was able to return to Rock Steady Boxing, which I enjoy hugely.

My guess is, you may see a big improvement from your fitness routine. Exercise -- you can't beat it!

Farec profile image
Farec in reply to Beckey

Hi Beckey. Am interested in the dopa Mucuna you are taking. What brand and levodopa strength are they. Sounds like you are getting on well with them

trikelover profile image
trikelover

I get a lot of benefit in cycling. I cycle with a three-wheel recumbent bike to strengthen the muscle strength in the legs. Greetings from Belgium

FMundo profile image
FMundo

Boomer, you may find out some answers to your questions in the articles in Parkinson's Online (on the internet) under the topic of "cognitive impairment". These 24 articles have appeared mostly in the last 3 years. One that looks particularly interesting from the Parkinsons Disease Foundation titled "Cognitive Impairment" includes a piece by Alexander Troster called "Cognition and Parkinsons."

Give me your email address and I'll be happy to grant you access to the database, or simply send you the article. My email is frank.mundo@gmail.com

boomermania profile image
boomermania in reply to FMundo

Thanks for the info Frank. I've already done some research on "cognitive impairment". I'll search up Troster's article.

EELAINE profile image
EELAINE

Welcome. I've just started on HU too because my husband was DX in 2015. Two points: His formerly excellent skills in computers have significantly diminished and he has no interest in looking at issues related to how to download files or transfer photos between I Phone an computer. Point 2: I am printing out the valuable lists and insights from SILVESTROV, HU member, because there is mounting evidence that PWP will l live longer with less damaged bodies by incorporating more non-prescription supplements such as Mucuna Pruiens, Theanine, Magneseium Threonate, Acetyl Carnitine, etc. & vital vitamins into daily diet and cutting back on synthetic dopamine.

boomermania profile image
boomermania in reply to EELAINE

I've tried the non-prescription route with no luck. Was on Kapikucu root for about 3 weeks with no positive results. (I think this is the same as Mucuna Pruiens) My resting tremor in my left hand got worse.

alaynedellow profile image
alaynedellow

Mannitol has cleared my brain fog dissolved my apathy and made my mind back to being crystal clear. I no longer feel like the mature person i had become.

munchybunch profile image
munchybunch in reply to alaynedellow

Wow that’s brilliant. Can you le share with us how long you ve been taking it and at which dose. Thanks

boomermania profile image
boomermania in reply to munchybunch

Yes, I second munchybunch's request. Thanks alaynedellow.

ion_ion profile image
ion_ion

I got my PD dx about the same time like you and I'm a computer programmer. I still can work but I noticed I can't work as hard as before so after each hour I do some exercising in my "prayers" room.

But still my brain is able to do complicated programming. I'm not on any medication yet but I plan to start Thiamine HCL for 2-3 month, soon.

I did not start C/L or amantadine for being afraid of side effects.

boomermania profile image
boomermania in reply to ion_ion

Thanks ion! I've been on B1 for about 3 weeks, with little or no noticeable effects. It's not the HCL. I plan to switch over to the HCL after I go through the bottle I have now. Keep me posted on what you experience with the HCL. Thanks.

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