What do I need?

[Gary Morgan]

Hello
I have been here off and on since diagnosed in January, but believe this is my first post.
I have very little use of my right hand and was wondering how I am going to continue using my computer? I hen peck with my left hand now...very slow process, lol! Also I have poor vision which slows things down even more!

So far the biggest problems is things like turning keys like in my truck, of course writing is almost impossible, holding a bar of soap while washing the left parts of my body and tieing my shoes and buttoning my shirts and pants! Seatbelts are getting to be a chore as well.

I am single and have been a care helper for my parents so I do live with them. I am also working full time but want to leave ASAP sine I can no longer do my maintenance work. Trying to figure out steps for disability and Social Security?

Well hows that for starters? Lol!
Thank God for this group and all of you!
Gary

[duplinwino]

Hi Gary and welcome. My husband's first started in his right hand and now his right arm is 95% useless. I would suggest a visit to an occupational therapist who can help with assistive devices. They have all sorts of "tricks" to help with the things you mentioned.

Disability and SS are not in our expertise just yet. My husband was luckily able to switch jobs within his company, he was a technician but then moved into management (desk job) since he could no longer work on cars. Maybe this is an option for you for a while?

But I think occupational therapy is going to be the best place to start.

Ashley

[Gary Morgan]

Thanks Ashley
I have been to both physical and occupational therapist months ago and they stopped after several months and then dr's orders. It is not just my right hand I have troubles with, my right arm is almost as bad and coth my legs are weak. My ALS social worker said I should have no problems getting SS and Medicare after I apply.
There is nowhere to transfer here, I work in a school, no matter, I am unable to do the lightest task anymore and do not want to have a accident involving me or especially a studrnt.

Again, thank you
Gary

[Icanmanz]

Gary, first of all, may God bless you. I read your post, and it was like watching a video of my late son. I was in tears before I finished reading your post. I remember when my son did not want to give up driving, and he would ask me to turn the key, and shift the gears for him. He drove and drove, until bless his heart, he could not go on. Gary, sweetie, we would love to keep on hearing from you, and I pray to God that he gives you the strenght and vision to do so. I am always saying prayers for my als friends on this forum. and all over. May God bless each one of you.

Irma

You sound to be such a loving son! Bless you!

[Rhonda]

Hi Gary,
I would call my als contact and tell them the trouble your having and they should be able to get you an appt. outside the normal clinic appts. As far as disability I would file now, I filed before I left my job. I would check with your employer to see if they had long term medical disability and if they do start paperwork asap. Hope this helps.
Rhonda

[Icanmanz]

Gary, my son's social worker got my son his ss and medicaire right away. My son, bless his soul, started getting his disability checks right after he was diagnosed. I can still remember what he said when he got his first check. My poor baby he told me he'd trade all that money for his health. I felt so bad when he said that. Talk to your social worker, I am sure he or she can get you started. Good Luck!

Irma

[CindyM]

Hello Gary-welcome to the forum. I hope we will be able to help you with what is going on. Are you registered with your local MND chapter? When you meet with social workers and so forth be sure to tell everybody you help take care of your parents. every little bit of help you can get for any one of the three of you will lighten the load all around! Please keep in touch and let us know how it is going for you. Cindy

[Peg B]

Hi Gary,

I am sorry you are here but I will try to answer some of your questions. I see you are from Indiana. You work in a school system, which I will assume is a public school system. If so go to YOUR UNION rep with this. I worked for a school system and I was out on leave 2 days after I told them I was DX with ALS. I was out 90 days and Long Term Disability kicked in. I am now in the process of trying to get SS. My situation is not exactly like yours but with a definite DX of ALS, you qualify under what is called the TERI laws under social security. Make an appointment with the SS office nearest you and take your papers and apply for SS and tell them you qualify under the TERI laws, Go to this site: .http://www.socialsecurity.gov/d&s1.htm OR go to the main page http://www.socialsecurity.gov/ and from the ALS Foundation:http://www.alsa.org/policy/ssa.cfm

As far as the computer goes: There is a program called Dragon NaturallySpeaking Preferred that you can purchase on line or in stores. Depending on the version you get it is 200 dollars or as low as 30. Just get version 7 or higher. This program allows you to talk and the computer will write what you say. It will also read everything back to you outloud and let you move about the screen, hands free, just by using voice commands. I hope these things help. Sincerely, Peg B

[janf]

[
GARY, BATHROOM ISSUES GET BOTTLES OF LIQ. SOAP ALSO THERE IS A WALL DISPENSER YOU CAN BUY TO PUT SOAPS AND SHAMPOOS IN. IF YOU NEED HELP SEND ME A MESSAGE AND I WILL FIND WHAT YOU NEED. BATHROOM HELP ALSO DON'T BE SHY WE ARE HERE TO HELP. SHOWER SPRAYS ARE WONDERFUL GETS TO ALL THOSE PARTS YOU MISS. WEAR SHIRTS WITH LESS BUTTONS. THERE IS ALSO A GAGET TO HELP TIE SHOES. PULL ON PANTS WILL MAKE LIFE EASIER. CHANGES ARE HARD BUT, WORTH IT. GOD BLESS YOU JAN :-D


QUOTE=Gary Morgan]Hello
I have been here off and on since diagnosed in January, but believe this is my first post.
I have very little use of my right hand and was wondering how I am going to continue using my computer? I hen peck with my left hand now...very slow process, lol! Also I have poor vision which slows things down even more!

So far the biggest problems is things like turning keys like in my truck, of course writing is almost impossible, holding a bar of soap while washing the left parts of my body and tieing my shoes and buttoning my shirts and pants! Seatbelts are getting to be a chore as well.

I am single and have been a care helper for my parents so I do live with them. I am also working full time but want to leave ASAP sine I can no longer do my maintenance work. Trying to figure out steps for disability and Social Security?

Well hows that for starters? Lol!
Thank God for this group and all of you!
Gary[/QUOTE]

[CindyM]

Gary- I forgot to tell you that if you haveperfectly good pants and know a seamstress you can have him or her remvoe the button on the waitsband of your pants and sew velcro in place. then sew the button on the outside, so when you close the velcro it looks like you have buttoned your pants.

I deal with sippers by tying a loop of fishing line through the sipper tab. The fishing line is easier to grasp than those little tabs.

Anything new I buy now is pull-up, like Peg advised. It I MUST get a button shirt I get it big enough to pull over my head and keep it buttoned all the time. Good luck-Cindy

[Gary Morgan]

Thanks Irma!
Sorry to hear about your son, sounds like he had a wonderful mother as I have! I am lucky I can still drive but only in day light hours, but try to have someone drive me as much as possible in longer trips. My ALS dr is 2.5 hours away! I hear he is one of the best in the country though!
The hardest part of this illness for me is my parents, they rely on me for help around the house, but worse, they lost my older sister to cancer only two years ago! So my illness has been hard for them to take. Not to mention both of them have health issues themselves.
Thanks for the thoughts and prayers, they mean a lot to me!
Gary

[Gary Morgan]

Thanks Rhonda!
Yes that helped, I am so lucky to have a co worker who helps me with my huge bills and my paper work, I don't understand why they make things so complicated! She took care of most of the paper work and bills my sister had for years while she battled cancer, she is just awesome and I would be lost without her!
Gary

[Gary Morgan]

Hi Cindy
GLAD TO BE HERE! I HAVE LEARNED SO MUCH IN JUST TWO DAYS! I don't even know what a MND chapter is! I have been to one ALS support group though.
Thanks
Gary

[Gary Morgan]

Thanks again Irma! God bless!
Gary

[Gary Morgan]

Thanks Jan!
Great ideas! I do have a spray hose already, just can't hold it much with right hand, The back brush is hard too, hurts my shoulders when I reach.
Lucky for me my wardrobe is all T's, lol but for church etc I do like wearing dress shirts. I love the idea of velcro for my jeans! Where do I find things that help like the shoe string tier? Thanks for the support and great ideas!
Gary

[Icanmanz]

Bless you, Gary. I am also praying for your wonderful parents. Sorry to hear about your sister that you lost to cancer. May she rest in peace. Let's not forget Gary that God knows how much we can take, and at the end he will shower you with comfort. The thing is that he works in such mysterious ways. We are all his children, and he loves us so. Whenever God carries out his plans he'll use some of our loved ones. After these loved ones depart this earth to go to a better place (Paradise), God knows that your heart is going to break, and He'll tell you it is okay to cry. but once you share your loved one with Him, and you will allow Him to take him or her home, He will not forget about you. He will stand by you, and shower you with the utmost comfort. May God bless you, and give you plenty of strength. Keep us posted gary. I love this forum. I am here every day. I try my best to keep up with my friends, they are so wonderful. God bless you all!

Irma

[Gary Morgan]

Thanks Cindy!!! This was so great and clever!!! Also keeps me out of sweatpants for now! Brilliant!
Gary

[Gary Morgan]

Irma
Thank you for those wonderful words of comfort!
I love this forum too already, nice and friendly folk for sure!
Hugs
Gary

[Gary Morgan]

Thanks Peg
Yes it is a public middle school and no being in maintenance,I do not have a union. I got the long term disability and SS papers today, just need to pick a last working day! That is going to be a tough one, going to be sad for me after working here for 19 years. People have told me not to wait till I am so weak, but to save time to enjoy life before I get too sick to do anything. That is why work had a fund raiser last Spring and sent me to Hawaii. just got back two weeks ago tomorrow.
Peg thanks for the links and help, I appreciate it so much! I will check out the software voice command, they gave me one for my computer here at work, but does not work well at all.
Have a good day
Gary

[Icanmanz]

Gary, I am so happy to hear that your job had a fund raiser, and sent you to Hawaii. How long were you in Hawaii? Memories of Love sent my son, his fiance, and 8 yr old son to Orlando, Fla, exactly one month before he passed. It is so sad to even think about it. People are really supposed to be happy and excited about going on vacation, a trip or whatever, but how can you be happy when time is running out? May God bless you folks!

Irma

[CindyM]

Hey gary- wish I could take credit for the "brilliant" ideas but they are not mine!:-D When I first lost muscles in my hands small motar skills went downhill so I searched the net for tips on how to do things easier. some of it comes from MS websites, assisted device catalogues, anywhere I can pick up tips that make life easier. My "genious" seems to be kn knowing which ideas to steal!:-D regards, Cindy

[landscape]

Hello Gary:

Just adding some more 'soap' ideas:
If it is a matter of the bar soap escaping, get an onion bag (the grocery store kind that's made of plastic netting ) cut the metal tab off the top, stick the soap inside and thread some quick drying cord through the netting at the top and tie that to something in the shower or bath.

If you know someone who can sew, they can make a 'mitt' out of towelling with a small pocket for a 'guest' soap bar. Slip the mitt on the hand to soap yourself.

Dress shirts can also be adapted with velcro by someone who sews. Same as Cindy suggested for pants. Remove the first four buttons (or whatever number will allow you to get the shirt on over your head easily) & sew up the buttonholes. Sew small pieces of velcro in the appropriate places, sew button on closed button hole.
Put shirt on over your head as you would a T-shirt.

There are lots of commercial devices that make daily living easier. Look for Medical Supply houses in your area and ask if they supply Aids for Daily Living. Devices that help you turn keys for example. Also cruise the 'net -- try Googling 'Aids for Daily Living Key Turner' and see what you get. Or check out the following site:

http://www.sammonspreston.com/supply/Default.asp?category=31

It will give you ideas for things that can be home made.

Elastic laces plus a shoe horn allow you to get lace shoes on/off . Get them from most Medical Supply houses. Or buy some elastic. I think the flat kind stays tied better than the round elastic. You'll need someone to tie them for you at first, (make sure they give the knot a good tug to keep it tight) then just leave them tied.

[CindyM]

Great ideas! I like the idea of sewing velcro on shirts. Probably looks better than my extra-big shirts that I pull over my head. You just saved some of my wardrobe from the "goodwill" basket, Landscape! regards, Cindy

[janf]

HI GARY YWELCOME YOU WILL FIND THESE AT www.sammonspreston.com but alo find what you ;like on that site and go on e-bay i got a bottom buddy $20 cheaper than it was at sammonspreston worth a try. also i agree with cindy i never unbutton my shirts just buy them larger and pull over unless LOL YOUR BIGHEADED JANF

[Gary Morgan]

Irma
Thank you so much. I was in Hawaii for two weeks and on four islands! Stayed in deluxe resorts and was indeed in paradise for those two weeks...never thought about my illness all that time, just fantastic!
Glad to hear your son got to Orlando before his passing, I am sure he was happy he went!
Gary

[Gary Morgan]

Cindy
Well to me your still brilliant! Hey I would be happy if you could pass any info to me like catalog titles web links etc
Seems like I keep going down dead ends!
Thanks!!!
Gary

[Gary Morgan]

AWESOME!!! These are hints I really can use! The link was great, my parents who both have hand problems as well can use some of these products too!
Again thanks and keep them coming! Lol!
Gary

[Gary Morgan]

Lol! Love Ebay! Great idea! Thanks!
Gary

[Icanmanz]

Good Morning Gary! I am so thrilled to hear that you had a fantastic time in Hawaii. Yes, my son was happy he got to go to Orlando, but he looked so tired. He bought me a beautiful clock in Orlando with Mickey, Minnie, Pluto and the gang in Disney. I will forever cherish that gift. Have a blessed day, Gary!

Irma

[Gary Morgan]

Irma
I know what tired is as well!!!
Glad you love the clock and the memories of your son!

PS I used to collect Pluto stuff...always my favorite...guess cause he was the quiet one of the gang...like me!

Gary

[Gary Morgan]

Thanks for the welcome...I feel like this is going to become a second family!

[robc]

I use Dragon Naturally Speaking v9.0 at work when my hands are crampy. It didnt work at all for me at first but I hired someone from their list of consultants on their website to come out & do the setup & training. They found that my sound card/microphone was lousy & sold me a relatively cheap USB headset. Works great now. The training cost a couple hundred bucks but it was well worth it.

If you want to send me a private message I can probably set up a webex session to give you a quick overview of how it works.

I dont have atrophy just spasticity & cramps so I probably use the software about a quarter of the time right now.