ALS can happen to anyone

[ALSmom]

Re: Can happen to anyone

Hi Pidge,
I feel your pain but I also have a son with a great attitude. Our son, Chris, was diagnosed in November 2008 and has already lost his arm and hand strength, his speech is just about gone and he is wheelchair bound but he can still crack jokes. We had him home for the last 2 weeks and we could baby him all we wanted. He is a newlywed of 1 year and is 41 years old. We have a new mantra...It is What It IS and Miracles Happen Every Minute. Cherish every minute you have with him and when you screw up, and you will, laugh at yourself.
I could not do this without all of you.
Kathy

 

[shelleynshaggy]

Re: Can happen to anyone

I would put his student loans in forebearance. Depending on the lender you have to apply every 6-12 mos for this. The interest will continue to compound - but that is the least of his worries. Also, call his lenders - some have some programs for situations like these. Unfortunately - we didn't qualify because they are my loans and Jim has the diagnosis. But his one credit card was able to lower his interest and put us on a payment plan. Apply for SSDI right away. He will qulaify for medicare then. Also, were were able to find an attorney pro-bono through legal aid. I know you aren't in Medina County - but check Portage? I know Cuyahoga has one too. I went through Medina 211 to find it. Our attorney is in Wadsworth - so there should be something near you too. We are getting all of the POAs, wills and Lord knows what else set up through them

What dr our you seeing at the ALS clinic? Our appointment is 10/8. Best of luck tomorrow - let us know how it goes.

 

[connieS]

Re: Can happen to anyone

Dear Pidge, I totally understand what you mean by you don't like this disease, yet it has taken you places both physically and mentally, which you appreciate. I do feel this way too, have learnt a lot since my symptoms first started. It has made me even more determined to do the things I have to do. In a way ironically, I'm also glad that I get to feel the way my dad feels, since my dad has oesophaegel cancer and can't take foods, I can now understand what he feels when the doc wanted to have a feeding tube placed for him, as it was brought up to me too. Its an unbelievable journey, and I still want to make the most out of it.

Dear Valya, I'm sorry for what is happening to your son. His progression seems similar to mine, except that mine started on my left, my stronger side. My hands and legs jerk occassionally, and I've spilled countless things on myself, and all over. We're all in this together, and I'm so glad that your son has you with him.

 

[Pidge]

Thanks for the advice I know there is somthing out there it's just finding it. I am not really worried about the money it's more about relieving my sons stress level he is still trying to work to meet his bills but finding it harder everyday. I'd like to see him quit & just enjoy the rest of his mobile time. Our appt. today is w/ Dr. Polston still hoping they may find somthing else but he has applied for SSI.

 

[Pidge]

Well after our trip to Cleveland Clinic we are back to square one they want to run their own tests. I guess that means there is still a glimmer of hope it could be somthing else. They gave my son a Rx for baclofen for muscle tightness & to stop his tremors. Hoping for the best but preparing for the worst...............

 

[shelleynshaggy]

So how did your son's appointment go Monday?

 

[seattle86]

Can I ask what your sons first symptoms were?

 

[Zaphoon]

Pidge, I'm glad you found this site but sorry you even had to search this subject out.

Hope I can be of some encouragement to you.

Zaphoon

 

[northerngirl]

Pidge,

I am praying for your glimmer of hope. You have but 1 choices with this journey, which is never give up hope. It gives you something positive to look forward too every morning. Pidge your strength seems amazing, it's that Mommy power you and Vayla seem to possess that keeps me in awe. I know you have bad days but, keep letting that amazing love for your child give you the strength to cherish the smiles, the laughs and the todays.

Thank you for sharing your story, and coming here to the forum. These are amazing people on here.

Hugs

 

[Pidge]

Shelly it was like his first neuro exam its like we are starting all over they want to do there own tests to rule out any other possabilities.

 

[Pidge]

Seattle 86 His first symptom was weakness in his legs mostly knees which I did not even know about until he took a fall around New Year last year. Then I wrote that off as to much fun in a bottle but he kept limping & it wasn't until this summer I made him go to an Ortho. and he sent him directly to a Neurologist. I hope I am doing this posting right still not sure I'm very computer challenged IDK.

 

[Pidge]

My son has a great girl friend & she doesn't cut him any slack where I admit I've been spoiling him lately. Well yesterday they were going for a hike him w/ his cane & I said as he's going out the door YOUR GOING HIKING?not once but 3 times the 3rd w/ a little giggle in my voice. Well he turns to me & says "YA MOM I'M GOING HIKING YOU GOT A PROBLEM W/ THAT! I might only make it to a bench & then I'm gonna sit down but I'm going hiking." Well at that the 3 of us just cracked up laughing I love those kids. Hope this lightens up some ones day.

 

[t34gib]

One thing I am pretty sure of is once he gets SS disability the student loans are forgiven. Not much help, but I am pretty sure of this as I know someone on Disabililty and their loans were forgiven.
NancyS

 

[hopingforcure]

Pridge,
Please do not worry about the loan's, this will all be worked out, just concentrate on your self and your son. Worry will just make thing's worse.

 

[brendapals]

pidge,

Laughter is the best, isn't it?

Hope you and your son are having a good week! I wonder , I don't have college loans, if my credit card would "forgive" my balance? Might have to see...

take good care,
brenda