Funds To Help PAH Disabled Grandma With Wheelchair Ramp And Accessible Van
by Pamela Fox-Luker
(Twin Falls, Idaho, USA)
I am a 58-year-old grandmother of three. My daughter and my grandchildren are the reason I fight so hard to stay alive.
My grandchildren are 15, 10 and 7. They are the joys of my life.
I live in Twin Falls, Idaho, which is a location where many retired persons choose to live.
It is a community of about 40, 000 people with a focus on family values, although it is not necessarily a good place to live if you are a handicapped person.
I have had issues with respiratory health for many years. Actually they began in my childhood.
Although for many years I worked hard for the financial support of my family, I often would work with colds, pneumonia, bronchitis or other upper respiratory infections.
Four years ago I started to have problems with my breathing. I was diagnosed with COPD although my family doctor was not comfortable with this as he felt there were other indications. He agreed that pulmonary decease was not his specialty.
I began treatment. Over the next three years I had to have many tests and procedures because I was proving not to be a normal COPD case.
I needed to have shunts inserted into both my legs because they would go numb and I was unable to walk due to the numbness. It became more and more challenging to breathe even on high doses of oxygen.
Finally, one of tests I was given was a heart catheterization and from this test, which is the only way to diagnose my illness, I was found to a have a rare condition called Pulmonary Arterial Hypertension.
There are four stages to this illness. Because it took so long to find I had this illness, and it is rare, I am in the final stages.
I must use a wheelchair for transportation to and from the bathroom and the bedroom. In fact to do anything more is almost impossible.
I also must have high levels of oxygen at all times. I need eight liters when I am not moving at all and 15 liters when I have any physical movement.Financial Hardship
My husband and I live in a split-level duplex. I have not been able to access the lower level at all for the past three years.
To gain access to the outside, my husband, who is 62 and a disabled Vietnam Vet, must carry my chair down a flight of 15 stairs to our front door. Then he must set up ramps that we have purchased to get it down the porch step and into the back of our car.
In addition to the difficulty of not having a ramp, the electricity needed to keep the oxygen machines running 24/7 is triple the amount that our neighbors friends and family pay because the equipment uses so much more power.
If I am able to get outside after my husband goes through the considerable challenge of getting my chair down, then the only way for me to get to my chair is to walk up and down the stairs, which is almost impossible.
If there were a fire in our home, I would not get out.Income Efforts
I am currently on Disability. My income is $1250 per month. I am totally unable to work because I cannot get to a job and because I'm not allowed any physical activity.
I cannot reach farther than my arm reach and cannot bend over at all. I have looked for jobs I could do over the Internet; however, all the jobs that I have found turn out to be scams.
My husband went back to school seven years ago. He obtained a degree in drafting and because of the housing fall and his age he was unable to find work.
He went back and obtained a degree in water conservation and management, and also solar energy and resources.
Because of his age and the costs to employers for employing anyone nearing or after the age of 60, he has been unable to find a job.
He's been applying now for over four years in all the states to thousands of companies. In fact they will not interview him although professional resume writers say his resume is both very well written and very appealing.
They cannot decide why he is not getting a response. It can only be his age and his need to be able to check on me and not leave me alone for more than a day.
The only work my husband has been able to secure is a minimum wage pizza delivery job which requires we pay for his gas out of his wages and tips.
I am fortunate in that I am on Medicare but because of all the tests my 20% comes to thousands of dollars that I am forced to make monthly payments to because the hospitals and doctors and providers require this.
In addition I make payments for my chair and what ramps we have. My oxygen equipment is at least $80 per month. I make $1250 and my husband makes $600 plus an additional $255 from his disability from service to his country.
Our rent is $750. Our power is $350 sometimes less. About $50, the rest of our income, is used to pay medical bills, gas and very little food.
I have approached agencies here in Idaho for help with low-income housing. They tell us that our income is too high to qualify for these programs.Specific Needs
I am looking for programs or grants that will help us build a ramp out the back door of our home, so that I can get in and out of the house in my chair.
I would also like information a programs or grants that would help me possibly purchase a chairlift for the stairs in the front door so that I can get down and up them without having to walk.
I would also be interested in a programs or grants that would help us with the high cost of our power bills.
I would also like information on grants that would enable us to purchase a more accessible vehicle. I need one to travel to see my PAH specialists several times a year. They are located over 300 miles away.
With a van, we could transport all my oxygen tanks, chair and other needs without overcrowding. It would also make if safer to drive because we cannot carry all that stuff ourselves easily.