Cognitive Decline - any suggestions?

[Lynnie1]

Hi, my name is Lynnie, and I'm writing on behalf of my significant other Ron, who was diagnosed last year with Parkinson's. He had been exhibiting signs of forgetfulness, but because of the tremendous amount of stress in his life, it was assumed that he was just overwhelmed. But last year, he was diagnosed, and has been given Carbidopa/Levodopa but it's not really addressing the major issue of, sometimes total, inability to focus and remember. He has a disabled son, so this is a grave situation. I help every way I can, but it's so distressing! He does exercise and goes to PD classes, but they tend to focus on the physical impairments. They do try to help him with concentration, but it's frustrating! Any ideas??

[Fredzu]

First things first...you are the caretaker of your husband and of his son. Who is caretaking You?

You need to learn to take care of yourself. I hear in your words the sounds of stress.

Who can help you take care of You? First.

FJohn1

[Lynnie1 in reply to Fredzu]

Hi Fjohn1, yes, I do feel very stressed. I'm looking into going to a local support group. They meet the 3rd Friday of each month, and maybe I just need to learn coping skills. Thank you!

[Fredzu in reply to Lynnie1]

You are making yourself proud, Lynnie.

[Bailey_Texas]

Hello Lyinne,

Ron may have some other problem. Make sure it is the PD. Then you can move forward.

[Lynnie1 in reply to Bailey_Texas]

I know Bailey_Texas, his neurologist passed it off as just good old Parkinson's, but Ron needs a new doc. This guy leaves us more dissatisfied with each appointment!

[Astra7]

I recommend he try NAC. It helped me hugely with mind and speech clarity, as well as some physical symptons. Start with 600mg a day and move to 1200mg if no side effects. (Dry mouth and other mucus membranes). It is quite harmless so nothing to lose if it doesn't work. You can get from health food shop, some pharmacies or on line.

If he does try it pls let me know how it goes.

[Lynnie1 in reply to Astra7]

Thanks, Astra7, I just looked it up online, worth a try!

[dhill7514 in reply to Lynnie1]

I agree and that's what I have done

[M-o-ggy in reply to Astra7]

Can you say what NAC is / stands for.

[Lynnie1 in reply to M-o-ggy]

N-acetylcysteine, I don't know too much about it yet.

[andrewij]

I would suggest Ropinerole, but you need to discuss this with your neurologist first. It does seem very effective.

[silvestrov]

The following link is to an older thread which I listed a series of nootropic supplements - supplements which boost memory and learning:

healthunlocked.com/parkinso...

[Lynnie1 in reply to silvestrov]

Silverstrov, thank you so much!

[JohnPepper]

Hi Lynnie. There is a company called Posit Science. They have several packages that help to restore memory. Look them up on Google. I purchased one of their programs many years ago and it improved my memory considerably.

There was something else I did at about the same time and that was to give up my job running a large company. The reduction in the amount of stress I was under made a huge difference to my Pd condition.

[Lynnie1 in reply to JohnPepper]

Thank you, John, the programs look interesting, hope he will be open to them in the near future. I did the Luminosity a while back. Regarding stress, that's the biggest negative in his life because of his disabled son. It's a constant battle. I truly appreciate your input, and I'm following you on FB

[JohnPepper in reply to Lynnie1]

Hi Lynnie. I'm so sorry to hear about his son. My immediate reaction is "How would your husband's early death help his son?" I ask this question because stress most definitely negatively affects the progression of Pd. when your husband dies, what will you do with his son? I would suggest that you consider doing that now, so that your husband can overcome the stress as soon as possible.

This sounds hard, but the logic is correct. I am sure your husband can do more for his son if he were to get better!

[Lynnie1 in reply to JohnPepper]

Hi John, I've been gently preaching this, and he finally spoke with someone about going forward to find a group home for his son. But it can take months because he now gets on a "list". And he loves his son more than life itself, so if/when it happens, he will be devastated. So it's a Catch-22. But it has to happen because he can no longer remember some of the tasks he has to perform for him. I have to stay vigilant until his son is in bed at night. It's very distressing for him and me.

[JohnPepper in reply to Lynnie1]

Hi Lynnie. I really feel for you all. We have to accept what is and stop wishing that it were different. When his son is in care in the right surroundings and with the right skills, your husband will feel more relaxed and less stressed. I don't know the circumstances relative to his disability, but whatever it is, he will be better off inside of a facility created to deal with it. You are all doing your best and that is all we can do!

[GrandmaM]

Recent studies are generally showing that exercise is a big key to brain health. Parkies might tend to overlook that because of the availability of Ldopa meds but it seems logical that it works for everyone, not just those aging "normally".

[Lynnie1 in reply to GrandmaM]

Hi GrandmaM, yes, Ron is still athletic at 67, has been walking about 3 miles a day forever, does his isometrics every morning and he is in the Rock Steady Boxing program at our YMCA. You can actually see a video of him on the RSB website! That's why it's so troubling that his memory and concentration are compromised like this. Thank you for your input, exercise is KEY!

[HealthSeeker7]

Look into the benefits of coconut oil.

[Lynnie1 in reply to HealthSeeker7]

HealthSeeker7, it sounds almost too good to be true, if only he didn't have such a distrust of foods. The list of what he WILL eat is very short. Coconut is in the NO column. No way to disguise it, requires too large a dosage, right?

.

[Hikoi]

Lynnie

There are other posts on here on this topic that may have info - this is one. healthunlocked.com/parkinso...

I think you are in a bit of a limbo stage which is very difficult. Cognitive problems certainly are part of PD to varying degrees but whether your husband has more than just Parkinsons, a Parkinson Plus syndrome is the question. It can be difficult to diagnose these and sometimes it is only over time that it becomes clear.

Some types of medications muck with your brain too.

I also agree with Fjohn, take care of you too. Best wishes to you both

[Lynnie1 in reply to Hikoi]

Hikoi, I also fear there's more going on here, but must change neurologists first.

[healthabc]

Physical exercise.... yes, but we also need COGNITIVE EXERCISE! I am taking PWR physical therapy right now, which is essentially a derivative of LSVT BIG, but for higher functioning PWP. So after several sessions of physical therapy, they also recommended cognitive "games". I was given a page full of recommended websites and instructed to spend 30 mins/day on this (can be divided into two 15 min. sessions) I tried 2 of them out, and yes, they challenge the brain for us pwp... braincurls.com, sporcle.com, jig zone.com, gamesforthebrain.com, aarp.org (select 'games', then 'brain games'). These are just a few to get started with.

I definitely had a brain jam, with all of that thinking LOL. Thought processes just got jammed up, ...and that is the point; that is where cognitive growth happens. Then you can go back and try to beat your past score(s).

Hope this helps!!

[park_bear in reply to healthabc]

Agree - in my experience cognitive exercise helps keep the mind sharp.

[Lynnie1]

Thanks, healthabc and park_bear! I have been trying to get him interested in brain games, but he hates the thought. Doesn't even like jigsaw puzzles. I think he's afraid of failure, of looking bad. Been wracking my own brain, how to ease slowly into it. Haven't given up, wont give up!

[park_bear in reply to Lynnie1]

Try to find something fun you can do together and tell him something like, "Sweetie, I love you and I already know you are having cognitive difficulties, which is why I am offering this [game, puzzle etc.]. It will be good for you to try and I won't love you any less if you have a hard time doing it".

[Lynnie1 in reply to park_bear]

😁 he does like a couple of the board games and card games. I know they're not "brain games" but they provide focus, and it's a start. Thanks!

[healthabc in reply to Lynnie1]

perfect! Card games are great, play was many different card games as you can find! When he is comfy with the game, add a time element into it, so he is encouraged to think faster! Some of the games are based upon speed of thought/action anyway... BTW, some of the websites I gave you have solitaire type card games...

[Palmarloop]

I wonder if one the on line solitaire card games might suit Ron. I always find them relaxing too which is a great help when you're feeling stressed. There is a game called Crayon Physics wonderful for keeping one's brain from turning to mush!

Best wishes to you both.

[Blackfeather]

Yes. Google 'zonisamide and Parkinson's' and you find a case study where zosinamide reversed dementia and restored cognitive function in a PD patient.

[Lynnie1]

Thank you, Blackfeather! Sounds promising!

[Blackfeather in reply to Lynnie1]

Here is the link about zonisamide and dementia. I hope this helpful.

sciencedirect.com/science/a...

[Lynnie1]

😳 Wow! Thanks, Blackfeather, and everyone else for all of your wonderful advice! It's a bit overwhelming, we had no idea there was so much info out there, and so many options! What a great community this is! So much support! And a little levity, which we all need!

[TheGimba]

Hi,

Okay, this is just my own personal experience with my husband. His motor symptoms were very mild, slight tremor right side...but his cognitive issues were getting really serious, he was only 50 and would fall asleep at the dinner table, zone out, he couldn't concentrate, was basically a zombie....Neuro Psychiatrist gave him Concerta...this is a drug that they give to kids with ADHD, but it woke him up and enabled him to concentrate and work again. He didn't lose his job but almost did. Super scary! An increase in Sinemet has also helped but he says the Concerta had the most profound effect on him cognitively. Caution!! tooo much made him aggressive and almost destroyed our relationship...the right dose is key or they can go kind of manic, super up basically, super alert. Worth a try, all the neurologists that we saw totally focus on motor and ignore non motor which can be even more destructive than motor.

Hope this helps!

[Lynnie1 in reply to TheGimba]

Oh my Heavens, TheGimba! You are describing my guy, and it's getting worse. But did Concerta cause sleep problems? Ron only sleeps maybe 5 hours at night as it is.