URGENT- Don Souden Has Had A Stroke

[Archaic]

Your Cards For Don Are Arriving!

Good news, finally got to talk to Don for first time this week. He called me about 10 times in a row, but every time I picked it up there was no one there. It went to my voicemail but it was just just his voicemail recording saying it was full. I kept calling back but he didn't pick up: he might have had his flip-phone open. Then he texted me some shortcut preloaded phrases like 'Be there soon' and 'Call you right back' and rang a few more times. I persevered & with help of staff I finally got to talk to him.

Don sounded a little slurred and rapid at first, but told me about an old friend of his from Columbia University visiting him. He told me a number of random anecdotes from college.

Then as he spoke his focus improved and he told me he received cards from Carol, Cris (Hunter) and Ally. He remembered some details like that Cris lives in Tennessee.
I asked if he had a reply for his friends, and Don said everybody "said too many nice things about me". But I could tell he was pleased, and the cards had really given him a lift.

Don is working on being able to read the cards himself, so everybody's efforts to print large and legibly are having a good effect! now that he knows what they say, when he tries to read them it will be easier for him to make the connections in his head that will help him to read on his own.

I told him more cards are coming and he's looking forward to them.
(I'm so relieved the zip code error didn't prevent him from getting his mail, I've been so worried about that! God bless the US postal workers that hand-corrected the zipcodes and delivered the cards.)

Don asked what the news is on Casebook. (If anybody has news please send it to him.) I told him I've been working so didn't know all the news, but told him the news I do know is that everybody misses him and needs him to get back to writing and publishing.

Then Don suddenly said very clearly, "I bet they're waiting for cctv of Aaron Kominsky in Mitre Square!" I almost fell out of my chair. That was sure unexpected. Then he said, "Tom wants to catch Le Grande..."

He got a little fuzzy again and asked me numerous times in rapid succession how I am, how's my wrist, how's my health, but asked the next question before I could answer, so I just waited for him to zero in on a subject.

He asked about Jane Coram, and suddenly told me clear as a bell "I'm writing the forward to her next book in my head." (!!!)

Then he wandered a little and talked again about his college days at Columbia in NY.

Suddenly he told me somebody's "nephew is studying Graphic Design." I said ''Oh yeah?" He said, "Yeah. I'm gonna ask him to do the layout for the next magazine". So he's already planning his next Ripper publication! Wow!

Don said, "How are you doing Bunny? I worry about you. How's your neck?... Take care of yourself...Don't overdo it." I told him I'm doing pretty well, and I worry about him. I suggested we make a deal, that he will work at eating, doing his exercises and getting stronger, and I promised I'd eat, keep my weight up, and "not overdo it" working. Then we sealed the agreement in a handshake over the phone. I said, "OK, it's a deal then; we shook on it." He said "OK, it's a deal." Hopefully he will really try to eat.

After that he was pretty tired, so I asked him what message I should post for his friends, and he said, "Tell them thank you."

Don has a long road ahead. Please keep the thoughts, prayers & cards coming.

Thanks everyone,
Archaic

[Archaic]

Errata, would you please post or email me some links to the phone you mentioned that is designed for stroke victims, etc? The one that has a way to insert photos by speed-dials?

I looked online late last night but didn't see it.

I'm thinking maybe we could get him a simple push-button speed-dial phone of some kind, cover up any extraneous dials etc, and paste photos to it ourselves.

I'm trying to figure out whether he could use a Voice Dial phone, but it probably can't be a touch-screen cell phone as he's used to a flip-phone.

I'd appreciate any links or suggestions anyone might have.

Please bear in mind that Don only has use of right hand, and cannot read numbers, letters, or other abstract symbols. His coordination with right hand is limited.

Thanks very much,
Archaic

PS: If somebody can invent a simple easy to use phone solution for stroke, dementia, and other patients with neurological damage, whether it's reworked old phones or a brand new invention, they will get rich quick.

[Robert]

He may fear the outcome of eating - the lack of control would feel fairly humiliating.

[Errata]

I hope to God Don will start eating. The food there probably isn't very exciting, but he needs the nutrition.

Not sure how it works in other countries, but American doctors only wait so long before they start talking about inserting a feeding tube.

And Don would really hate that.

Best regards,
Archaic

He may be having some issues with eating that he can't articulate. My grandmother in law felt like she was gagging and choking when she ate, even though she wasn't. Eating also made her ears ache, which made sense to me but I can't really say why. Refusal to eat is easier than trying to explain. If no one has, someone should ask him if eating is causing some kind of discomfort.

And frankly, there are very few things a stroke survivor can control. And someone in the hospital after a life threatening event needs some sense of control more than anything. He can control whether or not he eats. Giving him control over some other aspect of his care if possible can be a huge blessing. Choosing his own food might help, or even having a nurse ask him if it's okay before giving him medication. He's lost a lot. He may get it back, but he doesn't know yet. He needs something that he is the master of, because right now, he can't even control his own body. He likely has or will soon have a psychologist working on his case. They usually assign one to convalescent patients. If his sister can talk to his psychologist or even the nurses about giving him some control over his fate, it might help him a lot.

[Archaic]

Hi Jukka. I'll tell Don for you.

I'll explain to him about the zip code thing. Hopefully the mailman will be cool and hand-correct our cards, especially as they're being sent to a business address that they can verify.

I hope to God Don will start eating. The food there probably isn't very exciting, but he needs the nutrition.

Not sure how it works in other countries, but American doctors only wait so long before they start talking about inserting a feeding tube.

And Don would really hate that.

Best regards,
Archaic

[Ally]

Well please tell Don I did send a card, but I sent it to the wrong address. I'll wait and see if it comes back.

[j.r-ahde]

Hello Archaic!

All the positive things to Don!

Jukka

[Archaic]

*don's Address Has Been Corrected In All Posts

Just so there's no confusion, I asked Admin to go into this thread and correct the zip code (postal code) of all posts in this thread. So don't worry about about "which one is right". They're all right.

I haven't talked to Don in a couple of days, but he did send me a text. It didn't have any recognizable words in it, it was just a couple dozen random letters all run together without spaces, a "!" part way through and a "?" at the end. So he's trying.

Yesterday Don was refusing to eat. His sister managed to make him eat while she was there, but now he refuses.
I'm hoping to speak to him Saturday when his brother visits and will give do my best to give him a pep talk about building his strength up. Whenever I lose too much weight he always urges me to eat more, so I'll remind him of that.

Errata, that's a great idea re: the corded phone w/photos; thanks very much. I'll look into it and will tell Don's sister.

Thanks,
Archaic

[Errata]

Sometimes home health stores where you get wheelchairs and such sells corded phones where you can put someones picture on the button, and you program each button with a phone number. So that might be an option. Also the better he gets, the more his speech and cognition may slip. It's not necessarily a sign he is backsliding or anything. Often stroke sufferers get frustrated and think effort will overcome the problem, when it wont. They tire themselves out much more quickly. So don't despair.

As time passes, some of the damage to emotional centers will begin to show. Right now he is exhausted. As he gains strength he might have some temper problems, or crying, absolutely depression. Emotional symptoms are very common, and most likely they will pass. But our emotions are as electrochemically oriented as our cognition. And they are as affected by the short circuiting effects of a stroke. People tend to react badly to inappropriate emotion, in a way they don't react to a failure of logic or forgetfulness. But some inappropriate emotion is very normal, and I promise you that anyone who doesn't scream for a solid month and a half after a stroke is doing more than fine. So anyone who talks to him, just keep it in mind. Don't freak out, don't treat him like a child, don't panic and hang up on him. It's absolutely normal. My fiance's grandmother has become hypersexual since her stroke. Sure it makes her family uncomfortable, but I'm not related to her, so I think it's awesome. So does she. It's a very rare side effect though. Don will likely have something less fun.

I hate this phrase, but it is what it is. It happens, theres no way for it to not happen, and I have a hell of a lot more respect for a guy who just got a cattle prod to the brain who is trying to rebuild than someone who decides to make that guy feel bad by treating him like a leper because he doesn't have total control of his emotions. He probably doesn't have control over his bladder, but nobody would freak out over that. I see it happen all the time, and it pisses me off every time. You get to choose what you expose yourself to, but you don't get to make someone feel like **** because of something they cannot control. So if you don't think you can handle it, wait to talk to him until he is better. Otherwise, I am absolutely going to think you are a terrible person and treat you accordingly if you cannot manage to dredge up more self control than a stroke victim. All I'm saying is be a grown up. It would amaze you how many can't manage it.

[Archaic]

Attn: Address Correction

IMPORTANT: I just found out that Don's family gave me the wrong zip code for his address.

They said 06891 but the correct zip is 06890.

I only found out by accident while my post office was weighing a large card.

PLEASE CAN SOMEBODY ASK ADMIN TO CHANGE THE ZIPCODE IN BOTH POSTS WHERE IT APPEARS?

I'm not home & wont be for awhile.

Thanks

[Archaic]

Don's Address

Hi Nats, i'll pass your message to Don when i can.

Here's Don's address again for those of you wishing to send a card or postcard.

Please be sure to print your message clearly, including your name, as Don can't read at this time and it will be either a staff member or a relative who reads your card to him.

Clear printing will also help Don start to relearn to recognize the letters of the alphabet, which will hopefully aid his return to reading and writing.

*Please also make sure you write ATTN: Donald Souden either within the address or just below it. (Don't worry about a room number, as he has been moved several times.)

Don's address:

Southport Manor
930 Mill Hill Terrace
ATTN: Donald Souden
Southport, CT
O6890
USA

Those of you who live in London, maybe you could send a Jack the Ripper souvenir postcard? That would wake them up at the care facility!

Don also loves sports, especially Baseball, but Cricket too.

Thanks,
Archaic

[Natalie Severn]

Thinking of Don-a lovely chap and excellent ripperologist.Hoping he has a very speedy recovery Norma

[Archaic]

Talked to Don

Talked to Don for a few minutes. Had to wait a bit because he insisted on keeping his fliphone open for me to call, but it's the type that can't ring when open.
He sounds worse today. He had trouble focusing and his voice was less clear; a bit rapid, unmodulated, and garbled. He suddenly asked me how i was 4 or 5 times in a row, which is a symptom of stroke.

I was trying to talk to him and he suddenly said very fast "She's a frustrated concentration camp guard!" Good old sardonic Supe. (He was talking about his sister who was trying to get him to eat so he'd get stronger.) He said "She's bossing me around." I told him that's what sisters are for. Plus she wants him to get better. He made a loud "harrumph" sound then went, "Yeah?".

I asked if he'd like to hear from some more friends and he said yes. Read through more messages on this thread and his memory was suddenly very good again-
he actually corrected me when I mispronounced 'Cogidubnus'!! He pronounced it correctly and said "Yeah, that's Dave White." Wow.

Just last night I told his sister that on Friday he sounded so good I was half-expecting him to correct my English, and here he has actually corrected my Latin! So that's sure a good sign.

Don only lasted a few minutes on the phone today; then his sister took the phone back and said he's feeling a bit off and cranky today because she's been trying to make him eat properly. He's probably also upset that she has to go home tomorrow. Poor guy will be so lonely.

I asked if she and I could talk when she has time so i could understand his prognosis a little better. She said yes, but i don't know when that will be.

I may talk to him again later today if he's feeling up to it. Stroke victims have good days and off days; that's normal.

Please do send cards; Don's very much looking forward to them.

Thanks,
Archaic

[Archaic]

I'll ask if he has a laptop. Skype is a good idea for when he's doing better, but at the moment he cant possibly use a laptop. He's paralyzed on his left side, has little coordination and can't read letters, numbers or symbols.

that's why i was hoping for photo icons but he has a flip-phone.

I'm trying to find out how much phone help it's possible for him to get once his sister goes home. Not sure if staff will do it. Maybe his speech therapist will as part of his therapy. Or perhaps a local friend or a volunteer can assist him.

i'm waiting to speak with him now.

archaic

[Ally]

Do you know if he has a laptop? Skype might be an option. It can call regular phone numbers and also has video option so he could see people who are calling him.