Re: Marriage and CMT/financial problems

[Guest guest]

These posting about marriage and CMT have helped me alot. I have been talking

to Jeff about feeling lazy myself. He's great and says, " I don't think you're

lazy! " . It is hard to have been on the go all the time and then not being able

to. Guilt has gotten to me.

If I'm not cleaning I feel guilty and lazy. I just can't do it. Now I just had

an MRI and found out I have a herniated disk in my back. I haven't worked since

November and we're broke. He works 6 days and I'm trying to get help

financially. I get so depressed I don't want to even go through the motions and

am bad at paperwork. Anyone have any suggestions?

Gretchen has always given me great information. I just wanted to know if anyone

else has problems financially (not being nosy), just if I'm the only one going

through this. I hurt my back at work, but now am having problems getting money

from them. Maybe my back did come from the CMT, I don't know. And I'm having

problems proving it. Any help would be greatly appreciated.

Thanks,

[Guest guest]

I have been trying to research the likelihood of my fiance receiving

SSI/SSDI because of her CMT, which caused her to have to quit her

desk job. I know that they use something called a Listing of

Impairments to aid them in making a determination. If your

disease/disorder is in there and you meet the requirements stated in

there, you should be approved for disability according to my

understanding.

Here's what it says about CMT:

11.14 Peripheral neuropathies. With disorganization of motor

function as described in 11.04B, in spite of prescribed treatment.

11.04B states:

B. Significant and persistent disorganization of motor function in

two extremities, resulting in sustained disturbance of gross and

dexterous movements, or gait and station (see 11.00C).

11.00C states:

C. Persistent disorganization of motor function in the form of

paresis or paralysis, tremor or other involuntary movements, ataxia

and sensory disturbances (any or all of which may be due to

cerebral, cerebellar, brain stem, spinal cord, or peripheral nerve

dysfunction) which occur singly or in various combinations,

frequently provides the sole or partial basis for decision in cases

of neurological impairment. The assessment of impairment depends on

the degree of interference with locomotion and/or interference with

the use of fingers, hands and arms.

So, what should all of this tell me? I guess I interpret it as

meaning you can qualify for disability benefits if your CMT affects

at least two extremeties and significantly interferes with the use

of your fingers, hands, and arms. Am I interpreting this

correctly? If any of you have had to deal with your state's

disability determination agency, what was your experience like? Any

help would be greatly appreciated.

Rob

[Guest guest]

,

You are not alone with the financial problems. At least you have a husband who

understands. Before I got on SSDI, I was a special education teacher and made

ok money, but we still struggled.

My husband has not held a full time job in over 2 years and he will only help

clean if I ask him too and I work at a daycare at least 6 hours a day most days.

Even with working and the SSDI,

we are majorly struggling.

I wish my hubby would learn more about the types of limitations I have but he is

always trying to compare his little ailments

to mine. I get tired of it so I push myself to do things I shouldn't be doing.

So I live in pain physically and emotionally. Sorry to be so negative,

just wanted you to know you weren't alone with it.

Jen

[Guest guest]

I am married to a wonderful man who is on SSDI. he started drawing it the

year before I was diagnosed. I hadn't worked enough quarters just before I

became disbled so I can't draw my disability. I tried Supplimental securioty

income

and at 1375 on my husbands income that was declared to much income to get

SSI. to make matters worse I am a diabetic and now my husband has a bone marrow

diorder and has been given two years to live and we cant' afford a good

cancer doctor for a second opinion because they all want more than his social

security pays. I am grateful our family doctor gets my insulin free and MDA has

helped me get the 500 dollar a month neurontin and my cancer doctor gets me my

tomoxifin free for my breast cancer. I believe the middle class disabled

people in America are destin to die before our time. we can't even qualify for

medicaid. fortunately for us we have a lot of love and understanding and we are

here to help each other. ya'll are not alone in that big finacial worry boat

out there. I just learned about something called the angel food foundation

sounds good to help with groceries if any one is interested email me privately

and

i will shre what i hve found out. cathleen