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RoadKill

Active member
Joined
Aug 19, 2009
Messages
91
Reason
PALS
Diagnosis
05/2009
Country
US
State
MD
City
Suburbs
Went to Hopkins today. That was a complete waste of time. Got a Rilutek prescription.

My right arm and hand are completely useless. My left arm and hand are weakening. I've fallen twice and have an unsteady gait. I can't wash my (very short) hair. Brushing my teeth takes all my energy. I can't button buttons or zip up zippers...

I could do a hundred pushups 18 months ago. Now I can barely lift a fork with my left hand. I own loads of sports equipment I will never use again.

And they said I was in good shape and should be happy about it. They were happy. I guess not being in a wheelchair and on a ventilator and feeding tube are good.

No family. No close enough friends to want to help me. I don't know how long I can continue faking it at work. When I have to quit, I will lose my insurance. SSDI, sure, I'll eventually apply and can afford to live in my 11 year old car on that.

Why bother?
 
First so sorry you are going through this crap. But I am glad you found us.. We are all going through this journey together, and being a super fit pre sickness person myself, I understand how down you feel. But please know we all get how you feel, we do not want you to feel like your worthless, you are not, this disease is just a bummer, but you are still you, you are not the outside, you will find so many people on this forum with so many challenges, and so much heart, please stay with us, we are here for you.
 
Thanks. This just completely sucks. I read a quote by Michael J. Fox about how rewarding his life has been since in PD diagnosis and how he wouldn't trade those years for anything including being cured and I wanted to kick him in the teeth. Good thing I am physically incapable of that. I don't need to suffer to have a rewarding life or to appreciate the good things.

When things get worse, I will have no help or income or insurance. I am terrified.

The so-called expert at Hopkins was an idiot and so was the clinic nurse. I asked if she knew of a psychotherapist who could help me and she said I should just get everyone, yes, EVERYONE (you know, every single person on earth), to deal with ALS, death, dying, and disability. Apparently that is easier than finding one competent mental health professional who can help me cope.

This is overwhelming. There is no place for someone who is not economically viable and/or physically able.
 
Hey there, Roadkill! (You just got to love that handle!)

I'm not sure which image of roadkill is stronger in my mind right now, a dead deer or dead opossum. (Both have been spotted in the past few days.)

Anyway, I digress... Welcome to the forum and I'm sorry you had a bum visit at Hopkins. It's a sorry thing to watch yourself deteriorate at any speed of progression. I'm trying really hard not to watch but sometimes I just can't help myself. Sometimes I'll glance at my arms and hands and think, "Have my arms always been this thin?"

The push-ups - yep! Like you, I use to be able to do several (about 50) and now, not one. Push-ups are overrated any way! I must admit that since retiring from active duty, I really haven't been in the swing of doing them. However, I have recently attempted to do some just to see if I could and I could not.

When I get down, I just put some cinnamon poptarts (unfrosted) in the toaster and smother them with butter when they pop up. Douse them down with some stout, black coffee and I'm happy again! I believe in feeding my twitches...

Nice to have you here, Roadkill!

Cheers!

Zaphoon
 
Thanks, Zaphoon.

Feeding the twitches! Well, you got me to laugh. Yeah, I don't have to worry about cholesterol anymore. I think I will go have some ice cream for dinner.
 
RK, I'm glad you found the forum, although sorry for the reason, of course.

In the beginning it can be overwhelming, trying to figure out the logistics of just living in society with a major downturn in finances and facing a debilitating illness all at the same time. Couple those with lives that aren't anywhere near perfect to begin with... so yeah, we get what you're saying.

When you were at Hopkins, did you meet with a social worker from the MDA? There should have been one there who could advise you about various grant monies you can apply for. Also, they (Lora Clawson, not the MDA rep) were very helpful in providing me with adequate documentation to push my SSDI to go through. I only went to them for help after hitting a snag on my own. In retrospect I wish I'd asked for help up front.

Stu Millheiser is a member here, and he has started a foundation to help PALS, here is a link that explains what his goals are:

https://www.alsforums.com/forum/showthread.php?t=8424

I will send him a message and ask him to look for your post.
 
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Thanks, Rose.

I just saw the doctor and the clinic nurse. The doctor left me in the exam room for 40 minutes in the middle of the exam. All told he probably spent about 8 minutes examining me. I was told by the original neurologist who diagnosed me that this Hopkins guy would be much more thorough. Then I had the EMG and nerve conduction tests. Same thing -- the original neuro who diagnosed me did those and said they would be done again at Hopkins. The Hopkins EMG and nerve conduction tests took about one third of the time as the original one.

Then the clinic nurse met with me for five minutes and told me I should come back on a clinic day. Then she handed me some information about "Advanced Directives" and I told her I already had all that stuff in place.

How do I meet w/a social worker there? Is there someone I can call? Until I have to leave work I will have good insurance so I want to make the most of it while I have it.
 
Roadkill, I'm glad you found your way here. What a scary, overwhelming position to be in. It really sucks. I would say to call that clinic and set up an appointment to meet with their certified ALS social worker. Have that person come to your house so they can evaluate what might be needed if you choose to remain living at home. He or she would have the best information for you, regarding funding, living choices, etc. Yes, you can continue to live alone. Here in PA I know of a patient who has lived alone a very long time with the help of some dedicated aides. But that is PA, not Maryland. We also have a very new residential home for ALS patients who want their independence. I was assured it was not like a nursing home but more of a patient friendly home where you can still live and do as you please. I would be happy to get you the info if you'd like to move to PA. Keep in touch, okay? We are all virtually here for you. -Pam
 
Roadie ... I'd also suggest you contact ALSA directly. I have received unbelievable personal help from my case worker, who keeps in touch on a weekly basis, or more often as needed, and has visited numerous times, including evening meetings as back up for me when I conferred with an agency about home care, and dealt with grant programs.

Another resource is your insurance company (yes, I know ... I have an HMO, so can match horror stories with anybody). Can you convert your work insurance to COBRA? My insurance assigned me a case manager, who is able to cut through the red tape and deal directly with the various departments. Hopefully, you will be able to keep your insurance. Whether you do or not, MDA will be your lifesaver.

I'm sorry for your diagnosed ... nothing can change that. But there is help available.
 
I agree with BethU. Contacting ALSA is an excellent idea. We did more than once when we didn't get help quick enough on the local level. Although our clinic people were absolutely wonderful, there are times when time is of the essence. I think this is one of those times. Don't wait another day!
 
I really appreciate everyone who responded.

I am going to switch doctors. The guy I saw was disinterested. I've got a couple recommendations but if you like your Hopkins neuro please feel free to suggest him or her.

I am going to call and ask what is supposed to happen at the clinic and ask if I can talk to the MDA social worker when I go there. I'm not sure what s/he can do. I'm freaking out about the future. I know living in the now is supposed to be good but tomorrow has a way of arriving whether we are prepared or not.

The ALS association... I'm not sure what they can do. I guess I will call them too and ask to speak to a social worker there too.

You are all being really nice. I appreciate it. Sometimes I think about how most of Dr. Kevorkian's "patients" were people with long term

disabilities and I think how I have no one to help me and I'm going to run out of money and will have no health coverage once I can't work...

You get the picture.
 
roadkill,
I do not know how close you live to PA. but some of hear go to Hershey Penn-State med center. I am not far from Maryland. I am really disappointed you had a doctor that was less than compassionate. I really like my DOc at Hershey, you should feel cared for and listened to. I want you to be sure that we willl support you any way we can, you have already touched so many of us, and we want to reach out to you with any advice, support, and caring friendship that we can.
 
Roadkill,

Will you send me a phone number I can call you at? There are things I can do to help you out. For starters .... you need relief from the obvious anxiety and depression you are having. I can get you what you need and I'll cover the cost. I can also get someone to help you plan for your future needs. Feel free to call me at H) 949-488-9894 or C) 949-233-3045. I've helped others on this forum. Ask around about me.

Stu ALSGuardianAngels.com
 
Roadie, I am so glad you found the forum when you did. I am really sorry about your diagnosis of course. It really does suck!

It looks like everyone has already given you all the advice I could have thought of. One other thing, the ALS Association has been amazing to us. My dad has not had to pay or wait for his wheelchair, scooter, and several other gizmos that he has needed.

Do call Stu. He has helped so many people with ALS. He really is a godsend.

As you can see from the responses you got, there is an amazing group of people here and for whatever questions you have, or whenever you need to vent, this is the place to be.
 
Ugh...I am so sorry, Roadkill (had to snicker at that one). I must have emotional LABILITY!

You are in the right place (the board here) and with the right folks. There is something about your post that leads me to believe you have quite a bit of life left in you and maybe even a sense of humor.

I like Kim's idea of feeding the twitches ;)
 
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