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]

Need Help

[
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