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rbtro

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Hi All,

Attended my first MDA/ALS Clinic at Johns Hopkins. I had been diagnosed in July by the Neurologist at Hopkins. He hooked me up with the clinic. Yesterday I spent four hours in an exam room. I was visited by the chief clinician a Nurse Practioner who did an interview, FVC, and supplied me with much literature and info, as well as prescriptions for Rilutek, Miracil, and a BIPAP. My FVC was 32%. I was then visited by a Mobility expert, this is the gentleman who should have fixed me up with a powerchair. But as you know I already purchased one from EBAY thanks to this forum. I was hoping to get some assistance in making some adjustments to the chair to better serve me. But this was not to be he just wanted to sell me a back cushion and some lateral supports. Disappointment. I was next visited by a Physical Therapist, she asked what could she help with and talked about Stretching and ROM exercises. Gave me her card and said she was available if I had any questions. Then after a significant wait came the Occupation therapist. Appologized for having us wait and then asked how we were managing. We explained about the ramp and the stairlift to get upstairs and the work we are doing to complete our lower level to an ADA compliant living area. (36" doors, roll in shower and comfort height commode with elevated seat). We explained that we were using the manual chair to get me into the shower and then I was standing while the wife slipped the transfer bench behind me to sit on. This is becoming scarier as my legs continue to weaken. She suggested a 3 in 1 shower chair. I said I had been looking for one but they were expensive and my insurance is tapped out. She said there might be one in the lone closet but she doubted it, for they go fast. She gave me her card and also said call anytime she too was available if I had questions. I was then visited by the neurologist, he came in asked how I was doing small talked for a little, read my chart and then proceeded to check my reflexes, range of motion and strength. Said my arms were about the same but my legs were definitely weaker. Reviewed what the NP had written and told me that he too was available if I had any questions. I was informed that the gentlemen from MDA was not available because he was in Tucson for the telethon. but he would be in contact with me on his return. I was scheduled an appointment with a Pumunologist, given lunch and it was over. I went home. To Be Continued......
 

rbtro

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continuation

On the way home, the wife asked what I thought. I told her I was a little disappointed. I hadn't known what to expect but I some how expected more. I felt all we got from the clinic was a few pats on the back for how we have adapted to living with this disease and a promise of support if and when we need it. I also got the feeling of the realization that I have ALS. I am or have been in the denial stage. I have not achieved acceptance.

Today is going to be an emotional one. I have given notice that I am going out on disability(can no longer perform my job). My boss has arranged a retirement party for this afternoon. I have been receiving emails and phone calls from people I have worked with the last 20 years. I can recall reading on one of the forums that after diagnosis you go through three stages. The End, the Middle, and the Beginning, and now I am living it.
This is the transition from the end to the middle. I hope I can get to the beginning rather quickly. This forum has been a big help. I am sorry for the long post. Just want to air some of my thoughts. I am hoping to hear some from others on their experience with the clinic. I can see where I will be needing a lot more support as this disease progresses. The mention of the BiPAP made me more aware that I have this disease and that the current condition may be the best I will have. Thanks again for being here.

God Bless
Rich ò¿ó
 

Elo

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Messages
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Hi Rich, you are describing the very same way my husband and I felt when we went to the ALS Clinic the first time, at the time my husband could walk in and out of the clinic and it was a long walk from the parking lot to his office. We just thought there was something they could have suggested to stop the disease, but unfortunately, little did we know about ALS that there is nothing, we spent about four hours at the clinic going through the same things you did and was hoping to hear something positive with the neurologist at the end of all these testings, but nothing. Subsequent visits were the same with the neurologist recommending Rilutek. Mostly, from what I can see they monitor you to see how much you have deteriorated and the different specialists recommend the gadgets that can help you to live with ALS. I think that as a patient gets worse, they prescribe the major things for them like feeding tubes, etc.

What is Miracil and Bipap? Take care Rich and all the best, my husband and I went through what you are describing, giving up work was the worse for my husband as he really enjoyed the people he worked with, but they still keep in touch and they come to visit him every so often, God bless,
Elo
 

Al

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Hi Elo. Not sure what the Miracil is but assume it is a drug available in the States. A Bipap is a Bi Level Positive Airway Pressure breathing device. It is a non invasive ventilator. I use one. You wear a mask or nasal pillows that seal and the machine breathes for you. I can't breathe laying down due to the chest muscles being shot. The machine pumps air in and cycles to a lower pressure to allow you to exhale but still keeping a bit of pressure in your lungs to prevent collapse. The pressures are set by the Respiratory Therapist. I had to go to Westpark Rehab Hosp. in Toronto for 5 days to get set up with mine. It takes a bit to get used to it but sure helps. You sleep better and get the proper oxygen and CO2 levels in your blood so don't wake up as tired. Hope this explained it ok for you. AL.
 

rbtro

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Reason
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Thanks Al,

You know more about it than I. I have someone coming out to the house to set me up and fit me with a mask. They said I should try it in the evening for a few days and then begin to sleep with it. As far as the Miracil SP?, it was something she was prescribing to help with constipation. Since I've started living in the chair this has become a problem.

Thanks Elo,

That was my feeling exactly, The clinic is there to aid in assist in living with ALS. My problem is the Neuro has never given me a definitive diagnosis. I have been hoping that it is something other than. But when they start talking Pulmonologist, BiPAP, PEG, Living Wills and directives, it becomes quite clear that this is real. I have read so much and heard so many stories that it is difficult to Accept that it is happening to me. Then again I am truly blessed to have supportive family and friends as well as the MDA/ALS clinic, the ALSA support group, and this forum as well as some others. And who knows how it will progress? I read the other day of a man that has had it for 33 years. My only goal now is to live one day at time and live it to the fullest.

Thanks again and God Bless,

Rich ò¿ó
 

Barbie4

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Hi Rich

Hi Rich:

So sorry that you are going through this. I just read your posts and wanted to reach out to you and give you a hug online. My friend is not losing her professional job, but she is dealing with the loss of being able to mother her children the way she has always. She now has to deal with me, giving them some of the things she used to. It is extremely painful for her. At least she can still hug them.

My heart is with you and I wish you strength as you go through this very difficult time.

Barbie :)
 

patricia1

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Joined
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newjersey
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lopatcong NJ
i went to a clinic in philly which probably is closer. dr patterson there a group of people you see nurse phycologist pt ot lung therapist md and large team they are wonderful I have been with them for 2 years I was referred by John Hopkins Jeffrey Rothstein who is a research specialist i n als. I am now getting into the bypap study which is supposed to help you with your breathing and prolong your life ,so maybe you can look into it hope this helps pat
 
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rbtro

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PALS
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Well one can always use a hug. Just came in from spending the day at the MDA/ALS Symposium held here. One of the keynote speakers was Dr. Jeffrey Rothstein of the Johns Hopkins Packard Center. He covered the current clinical trials going on now several proposed for the near future. Looks like everything at Hopkins is not accepting new patients. The next trials don't start until 2007. The pulmonologist I am to see next month spoke of the BiPAP trial that has been initiated by Hopkins. I am hoping to reap some benefit from it. I get fitted for it Tuesday a week. I finish up my last week of work and then I will have more time to do what I want. Let's have some fun.

Hug you back,
Rich
 

Elo

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Mar 16, 2006
Messages
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Hi Al, thanks for the information on Bipap. You are veery knowledgable on a lot of things. How did you know that you needed one. Was it recommended after a breathing test? Elo
 

Elo

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Hang in there Rich, you have such a positive attitude, you will be ok. I really like your poem on your Philosophy for Living, I will print it off and hang it where I can read it every day, all the best, Elo
 

Al

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On
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Hi Elo. I thought something was going wrong when I couldn't breathe lying flat on my back. It was like someone sitting on ma and I had to struggle to get a breath. Lying on my right side I could breathe better than the left. I got the Bipap in Jan of 05 and now can not even sit back in a recliner at all. I am thinking of getting a tatoo on my forehead. This End Up!
If I am sitting forward or standing my breathing is ok but otherwise I need the Bipap. They did the breathing tests and a sleep study and the sleep study showed that my oxygen levels were going too low and the CO2 was too high because of poor air exchange caused by weak muscles. The sleep study told the tale more than the breathing tests. Hope this is enough info. AL.
 

Elo

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Hi Al, thanks a lot for the information on Bipap, you explained it very well. I guess the sleep study was done in the hospital, Elo
 

Al

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Joined
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Yes most larger hospitals have sleep labs. You go about 9 at night and they glue little wires to your head, face, legs and put bands around your chest and clamps on a couple of fingers. These all measure the muscle movements that tell them if you are in deep REM sleep .At first you think how the heck do you sleep with all this stuff? It isn't as bad as it sounds and there is no discomfort. They wake you up about 6:30- 7 and take the electrodes off and you go home. Not a real big deal. AL.
 
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