Living with Parkinson's Disease - Meet others & come say hi

@jfayesj0urney My spouse was having issues with seizures as well as his Parkinsons. He has had a few seizures that landed him in the ER. Once his medications starting working it helped to control most of the time. Be glad that they found them how they did. It is hard for my spouse as he is so tired and add the seizures meds ..it really tires him out. Prayers and hugs

@massee01
Welcome to mayoconnect. We all have something to offer whther it be kind words or have them written to ourselves. Hugs

@sillyblone

Hi @jatonlouise - I believe your message to @sillyblone may have gotten cut off.

@jfayesj0urney and @sillyblone - have you (or your husband) found anything that helps stop the exhaustion from arising?

@lisalucier after I was diagnosed and starrted taking L-dopa. I still had sone OFF timed. However, i was lucky enough to been living in Germany and to have my particular neurologist, who was on the medical board that approved the ABBvie pump for use in the EU, and she put ne on the pump. The only problem or OFF time is when I've done somethingbstupid, like forgot to turn it back on after taking a shower. I'm 80 years old, and was bed-ridden for over a year so those 2 things put some limits on my energy. But I" m feeling pretty good, all things considered.

@jatonlouise I have lots of trouble with interacting with this posting place. The typefont is so small that it's vry hard for me to read so I can't see all my typos (plus sometimes one of my eyes take offense at somtehing the other eye did so they won't play nicely with one another for a while.. and maybe I'm too wordy so sometimes I just get kicked out of the comment before I've finished. Or perhps my brain has used up all the words that were allocated for use at the moment . Or maybe the fat fingers that earned me a living for many years putting words on paper have decided that they've had quite enough nonsense for the after noon from this octogenarian and show their irritation by not coopereating as well as they once did and spew gibberish all throughout my missive. Sigh....

@jatonlouise, technical issues can be frustrating. You can make the font larger. How to make the font larger depends on the type of device you are using to access Mayo Clinic Connect, e.g., phone, table or computer.

I'm sorry to hear that you sometimes lose a message before it is complete. Your messages are not too long and there is no time limit. I wonder if you might be hitting another tab or window inadvertently which causes the message to be lost. Other members have shared that when they have a detailed, thoughtful message, they will first write them in a Word document or in Notepad and then paste the message into the discussion.

Anyone having technical issues, can get additional help by sending a message here: https://connect.mayoclinic.org/help-center/#get-technical-support

I've reached the same conclusion - write it in Word and cut and paste it
into the post. Plus I have a friend who volunteers for a PD Support group
in Waco TX and I can recycle my pearls of wisdom . 😉 For her, i've been
focusing primarily on pump- related info (although the prospects don't seem
as good as they are in Germany. My insurance covers my meds for the pump -
$6,000/month- 100% but given the battles I've had with my health insurance
to get them to pay my $100 for my son to have his teeth cleaned or have
them pay for my hearing aide in accordance with the policy, I don't have
very high hopes that they'll be any less recalcitrant certainly given
today's climate. Sigh
..

Stay sane and have a lively day!

@jatonlouise
Please don't feel bad about your comments. I have had to retype several of my comments over. Getting used to how things works on this platform takes time. You can share or respond. I myself am not looking for typos. I make them and so do other's. I refuse to use AI to type for myself . I don't trust it at all. Take care and keep sharing.🫂

@lisalucier
My spouse takes naps more then before. I would say in the last couple of years. He has been doing PT and he is more alert. But still falls because he either forgets or he does something careless. His biggest thing lately is his anger. I know it is the disease process, but it certainly is not my fault either. I have gotten used to him doing the blame game. I try to stay quiet..but hard sometimes. I have so much empathy in my whole being and would take this condition from him if I could. I might be worse. I still do not know if I might have Parkinsons as my Dad and brother have it. I am concerned for my children and grandchildren. I know this was off the subject, Thank you for your input and your sharing. I really do know that this site helps us all to deal with the conditions and possibly help someone else.🫂