Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway. Thanks to them, I have a lighthouse to help find my way."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript
Topics: General discussion/Open forum

Chat Participants:

  • patrick
  • speedy
  • don43812
  • bruce
  • john-c
  • melski

Begin Chat

patrick -- {welcome patrick}

patrick -- Hello, my name is Patrick Griffin. I will be the host for today's chat. Today's chat is open discussion. Does anyone have a bee in their bonnet about anything?

speedy -- {welcome speedy}

patrick -- Hi Speedy. I'm unfamiliar with you. What's your first name?

speedy -- I will be back in just a minute. Got to finsh up in the kitchen.

don48312 -- {welcome don48312}

speedy -- Larry I am located about 30 miles west of Charlotte NC

don48312 -- good morning

patrick -- Hi Don! Good to 'see' from you again.

patrick -- Speedy, I like your nickname. I retired from the Army Reserve (I was a medical officer) in 1999. The last five years or so, I got progressively gimpier. Thus, I was dubbed "Too Fast".

don48312 -- hi Pat

bruce -- {welcome bruce}

patrick -- Hi Bruce. Welcome!

bruce -- Thanks - Weather is perfect in Pennsylvania again today (mid 70's).

don48312 -- speedy, we just sold our time/share in Lake Lure, s/e of Ashville

patrick -- We get to talk about anything today. Anyone hear anything interesting about KD, medical research, good books, Miss Afghanistan pictures?

don48312 -- <---- heard nothing new

bruce -- Question for the group. I have a single point cane. My wrist strength is not what it use to be. Does anyone use a 3 or 4 point cane? Does it help?

patrick -- Weather in northern Kansas has been excellent. The best autumn we've had for many years. Cool at night, warm days, leaves turning great colors, etc.

don48312 -- beautiful here in fl, if the hurricane misses us. going to Gulfport, Miss casino 2morrow

don48312 -- <<-- USES SINGLE POINT CANE

patrick -- Bruce, I use a walking stick - longer than a cane, with a vertical grip. WOrks for me, and helps me maintain balance and to push off (like a ski pole) going uphill.

don48312 -- had lunch with kdfl on wed. he looks good

patrick -- Don, bet a buck for me. If you lose, I'll send you a dollar. If you win, we'll split it...

don48312 -- lol, k, slots?

patrick -- Don, do you and John live close to each other?

speedy -- OK I'm back Where are you from don

don48312 -- john and i live 1 mile from each other. we do lunch with wives every month or so

don48312 -- south of tampa fl

patrick -- Don, my idea of gambling is if I put a dollar bill in a change machine, and get back $1 in change, I'm a big winner...

john-c. -- {welcome john-c.}

don48312 -- lol, i'm a poker player

patrick -- Welcome John C.

don48312 -- i wish i was able to go back in Marines, and skin Usama Bin Laden

patrick -- Don, by brother (the rich one) prefers poker. He lives in the Bay area, and goes to the Lake Tahoe area to ski, etc. with his family. He visits the casinos in Nevada there and like to play poker.

don48312 -- I use 2 go 2 Vegas 2 times a year. thought about retiring there, but wife stated emphatically, "NO"

bruce -- I am retiring next year and moving south (getting away from the cold). I am hearing all kinds of horror stories about applying to Social Security benefits (I will be 55). Is there a resource that helps people understand the "dos" and "do not do" to help insure success?

don48312 -- I purchased a scooter a few weeks back, and love it.

bruce -- Don 48312 - what kind did you get?

patrick -- Don, good idea, but you Jarhead have no imagination. I saw on Discovery Channel that male leopards have barbed penises, and mate several hundred times in a couple of hours. I think if we capture good ol' Bin, we should spread some female leaopard juice on his anus, and put him in a cage with a horny male leopard. All in the interest of sciece, of course...

don48312 -- ss had a web site. i had no problem applying 4 medicare.

don48312 -- got a Pride

don48312 -- think we should castrate Usama. they treat women terribly

bruce -- don48312 - me too. I really like my Pride Legend. It gave me a new-found freedom.

patrick -- Social Security - the SS web site has good info, and you can order good booklets from them about the details. Also, check some of the ALS web sites for SS info - they have really helped each other with that info.

don48312 -- got a Pride Victory

john-c. -- Hi men: hope you are all fine & upbeat.

don48312 -- yeppers, upbeat

patrick -- I'll recommend that KDA add links and/or information about SS benefits and info.

don48312 -- i have gone to football game, theatre, and mall, which i avoided be4

patrick -- What's a Pride? I know it's a family group of lions, but I don't think we can handle more than one mate.

speedy -- Don I can tell you about scotters, I have 2 & a jazzy, I just took one of my scootewrs up in the woods to repair some fence that goi torn down. Runs best I have ever seen in the woods.

don48312 -- a brand of electric scooter

don48312 -- which 1 speedy?

bruce -- Patrick - thanks. Anything would help. I am already realizing that I need to transition my "mind-set" from a 60+ hour work-week to one focusing on benefits, investments, budgets, etc. I have been spoiled.

john-c. -- I live 3/4 hr from SSA HQ: why don't I just go in and tell them we all could use full benefits now. I'm sure they will roll over & send the checks.

patrick -- At what point do you all recommend a guy go from a manual wheelchair to an electric one?

speedy -- Pace saver III

don48312 -- speedy, so many claims for ss are fraudulent they have to check very carefully

don48312 -- have u tried a scooter pat. much cheaper

john-c. -- I bought a golf cart for the type of repair work on the property. Bruce, I'm glad you work 60: me too (more like 70). Getting tougher though.

patrick -- Bruce - it's an ego thing, too. When I retired from the Army, I'd planned on getting a job with a corporation. But by that time, I couldn't really work much at all. It was hard realizing that, after working since I was 14 (I'm 51). I find myself starting hobbies, now.

speedy -- I have had mine about 6 years bought one from A lady that died

don48312 -- here in Sun City Center, FL, we use a golf cart for a 2nd car. go to church, wal-mart, bank, grocery store, etc......

don48312 -- Pat, I took test to go into Army, but I passed it, so went into Marines instesd

john-c. -- I have a golf pro friend who really helped me with the $.

patrick -- It seems like one could get one of those little ATVs, a golf cart, a scooter, or a full-fledged electric chair. Any comments?

don48312 -- Pat, inquire at MDA to see if they have scooter in loan closit. they will lend u one for as long as u use it, at no cost

bruce -- Patrick, you are right. My ego has been taking a brusing these past 3-4 years. I gave up traveling for the company this year. I gave up most customer visits because of the walking, etc. I am actually looking forward to retirement on the one hand, but it is kind of scary on the other.

speedy -- I didn't have any trouble getting my chair when I got it

patrick -- Don, I think the Marines are the best. (My Mom was a Marine - BAM - in WWII) I really wished I put in four years right out of high school, then go to college and get commissioned. All the former Marines I know are really great people.

don48312 -- bruce, youll love retirement. we all do

don48312 -- i went to marines after judge sent me there. went to college after marines

john-c. -- We have an Invacare motorized wheelchair here (mother-in-law is 92 1/2): really good & reliable. Not bulky, turns on a dime: put new tires on it last month.

bruce -- The MDA is great. They do have scooters - you just have to buy the batteries. They also will help reimburse your scooter purchase (up to $2,000). It is a very easy process.

don48312 -- MDA will pay for batteries also. $200 per year maintanence

john-c. -- How about batteries & maintenance on the cart?

don48312 -- lol

don48312 -- what cart, golf cart?

john-c. -- E Z Go Electric one.

john-c. -- Greens fees?

don48312 -- i paid for scooter myself, as i'm saving reimbursement for w/c if i need 1, as very very expensive

don48312 -- never asked john

patrick -- One benefit I didn't want at first, but has been really helpful is assistance. I live alone, and I could not do the heavy cleaning and maintenance chores. My doc sent over a occupational therapist who did a survey; she recommended assistance; a contract was set up with the county health agency; and now I have a woman come two hours a week to clean (mop, vacuum, etc.). It helps me maintain my house (I used to be a meticulous housekeeper)In addition, I put more effort into doing the light cleaning, and the side benefit is that I'm not ashamed to have people come over any more. I do more socializing now.

melski -- {welcome melski}

john-c. -- Bruce: what do you do?

patrick -- Hello, Melski. I don'g recognize your name. Are you new, or do I have a touch of oldtimers disease?

don48312 -- Pat, I have a wife, but its much much much more expensive, lol

john-c. -- LOL

melski -- Oldtimer disease. been here before when it first started. Have Kd and live in Arizona. Where the Yankees are going to do it tonight!!!

john-c. -- Hi Melski

patrick -- Don, I undrstand that. I had 2 times at bat. I'd like to do it again, but I don't know if it's three strikes, you're out, or third times a charm!

don48312 -- i remember Melski

bruce -- I am a serior manager for Weyerhaeuser - Fine Paper. I am responsible for connecting customers electronically and developing/maintaining our transaction website.

don48312 -- lol Pat, go 4 it., luckly found a great woman 1st time. but for the grace of god go i

john-c. -- Good for you, Bruce! I sell/market for a construction co.

patrick -- Seriously, though, I think even if you have a wife, and a need for assistance, you can get help to do the heavy stuff. For example, my shoulders are really weak, as are my legs. Thus, something that used to be simple, like changing a light bulb or cleaning cobwebs is impossible for me now.

melski -- don: You have a good memory!!! No one forgets a good polak!!!

don48312 -- onward Warsaw

patrick -- Melski, I've heard of them Yankees, haven't I?

bruce -- melski - I am routing for Arizona. They have never been there and it would be nice to see fresh blood. (sorry Yankee fans)

don48312 -- i haven't followed baseball since strike

john-c. -- Pat: here in MD we try and remove cobwebs.

melski -- Don: Even though I live in Phoenix, I have been a yankee fan since 1958. A lot of excitement in the community.

don48312 -- thats great melski, go 4 it

john-c. -- AZ has done well this year, but those Yankees have been amazing this series.

melski -- Any word on how Jerry Lewis is doing?

speedy -- In NASCAR Jimmy Spencer Never forgets. Got to go catch you guys latter.

don48312 -- Mark Martin fan

patrick -- I am a proud descendant of Polish ancestors. My Mom's maiden name was Mimick (Anglicized from Niemec), and her Mom was a Smagacz. When I used to hear Polish jokes as a kid, I had to remind people that it was a Pole who first figured out that the sun was the center of our planetary system, not the Earth.

bruce -- Take care Speedy...

don48312 -- bye speedy

speedy -- {goodbye speedy}

don48312 -- my mom's name was Olevnik

don48312 -- <<<----- Polish and Proud

john-c. -- Patrick: no wonder you ned help with those lightbulbs.

john-c. -- I ned help with need.

don48312 -- probably turns em the wrong way, lol

patrick -- John-c - I just understood your last comment. However, being the good evironmentalist, I just clean the cob webs. After, all, spiders got rights, too. :-)

don48312 -- Pat, u should move to FL

patrick -- I've really thought about it. I agree with everyone who say the cold winters are bad on the bod.

don48312 -- I gotta go now, been nice, luck all, bye

don48312 -- come down 4 a visit pat

john-c. -- bye don

bruce -- Take care don 48312...

patrick -- Back to scooters - what are some of the brands that work best? What features does one need? What kind of batteries work best?

patrick -- Don, I'll try to do that. I've got a cousin living down that way, too.

john-c. -- FYI: I spoke to Kurt Fischbeck Thurs & have app't at NIH with him on 12/10.

bruce -- Pride has been good to me. Make certain the scooter's seat can be raised high enough so you can exit it easily. My brother has an electric seat height adjuster that is very nice. I bought the longer life, more powerful batteries and it allows me to go all day without a charge (up to 30 miles).

patrick -- John, great! He and Dr. Merry have tenttively agreed to participate in future chats. We'll get out the word.

bruce -- Patrick, one other thing. Prices are negotiable. I used the Internet to do my research and leveraged the local dealer down several hundred dollars and had him throw in some extras.

john-c. -- Patrick: what's the scooter deal? Couple of friends have them. They're bulky, hard to turn, unwieldy to manuver, etc. The motorized chair will be my choice. Again, I've been around the one here at home for years.

patrick -- Thanks Bruce. I keep thinking that I can get by a little longer without getting a powered chair. But after listening to you guys, I realize how much I've been limiting my life by not doing things 'cause it's so hard to ambulate.

bruce -- Patrick, depending upon your health insurance benefits, they also pick up most of the cost and MDA will pick up the rest. Not a bad deal for our budget conscious individuals.

john-c. -- One of the KDA members works for a co. that mfgs eithet Pride or ??

john-c. -- Damn fingers! EITHER

patrick -- If SS (or in my case, the VA) will finance an electric chair, how does that work? Do I find a good deal first? Do they have a list of companies they deal with?

bruce -- Patrick, I kept on telling myself the same thing, but realized that I just needed to do it. I am so glad I did. I am much more social with the neighbors and I love going on walks (rides) with my wife.

john-c. -- No pride here: I'll get a chair the first day I really need it.

patrick -- I was originally advised to delay getting an electric chair, as it tends to increase muscular decay. However, I've reached a point where I'm struggling with arm strength to go up even an easy incline, or across a carpet.

patrick -- If one gets an electric chair, does that imply also getting a modified van, or other vehicle?

john-c. -- Patrick: my Mother-in-law has been able to maintain great QUALITY of life (she has not been able to take a step in nine years) with the chair. We have regular chair in the car: Elec one stays home unless we leave for a few days.

bruce -- Well, I need to get busy. Nice chatting with everyone. Take care and stay healthy.

bruce -- {goodbye bruce}

john-c. -- I have to remove batteries to put the elec one in the car. bye bruce

patrick -- Thanks John. That's sound like a good idea. I have a Class II hitch and manual chair carrier on my car now.

john-c. -- Patrick: email me & I'll give you the skinny on our l o n g years of experience. Lots of our friends have scooters and lots have chairs. (about 15 folks).

patrick -- Ford makes a combination SUV - pickup truck with a short bed and four doors. I think it would be ideal for an electric chair carrier, if it was modified with a ramp and cover.

patrick -- John, will do.

john-c. -- Benefit of chair: it can be moved easy while you are in a regular chair (put it next to you) & then easily moved to in front of you when seated in a your regular chair. Use the weight of the elec one to pull up against to transfer.

patrick -- I see those ads on TV about those little ATVs made by Suzuki, etc. I'd love to get one of those and go hellin' about!

john-c. -- I need someone to help me with walking with cane, carry briefcase & umbrella at same time.

john-c. -- Small ATVs have engine hump you have to throw your leg over, but they are great (also $$$ 6-8,000 range).

patrick -- When I was in grad school, I had major problems with that stuff. Walking stick, briefcase, laptop computer, etc. I usually ended up getting help, after collapsing a few times on the way from the parking lot to the classroom.

john-c. -- Got to go: taking family out for lunch. I'll talk to you later.

patrick -- I did buy a good airport luggage carrier that was a big help. I bungeed all my stuff to it, and drug it along. It helped a lot.

patrick -- Adios John. Eat something tasty for me.

john-c. -- Same for me. Use it daily. Add that to the umbrella,! Bye

patrick -- Anyone still on line? The witching hour (end of session) is nigh...

john-c. -- {goodbye john-c.}

patrick -- If no one is still hooked up, I'll call it quits...

patrick -- {goodbye patrick}

End Chat