can you get through this w/o going to an ALS clinic

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Just a thought... there are over 80 ALS Clinics and Centers in the United States. Let's take some low quesstimate numbers remembering it sometimes takes weeks to get an appointment. If each of these places saw 5 patients a day, times 5 days a week, times 50 working weeks a year, times 80+ clinics... you have 100,000 people with ALS or some MND.
Yet, it is stated ALS is rare with only 5,000 being diagnosed a year and about 50,000 living with ALS. And... some only see ALS patients. Also... PLS is considered extremely rare. Remember... I used low quesstimate numbers. Maybe some Clinics see 10 patients a day. I have often wondered about that "5,000" number.
 
Sure am relieved you added "just my opinion" at the end of your post. Next time, try putting it in the beginning will ya?
Not everyone reads the fine print.

Your experience is not shared by everyone. Case in point, the Ottawa clinic is staffed by amazingly caring and competent professionals. In my case, Rilutek was a passing comment and certainly was not thrust upon me at all.
 
Ottawa Girl I can have any opinion I want, and I do not need your sarcasm either. In my opinion, I think ALS Clinics and Neuros are worthless. I have heard from some at ALSTDI, because that is where I am a member that this board is frequently monitored by want to be moderators who try to ban members for having viewpoints that do not coincide with their "ideals." For example, I think Pals are heavily discriminated against, and ALS is not even a terminal disease, because in 2013 respiratory problems can be dealt with via a ventilator. I have been living with torso onset ALS for over 4.5 years, and I am going to vent very shortly, and with appropriate care I can live decades. I came onto this board only for the reason of spreading the news that major demonstrations are coming on 1/6/2014 to address the FDA, the utter incompetence of researchers, and the ridiculous trials and the criteria for them. As an attorney, I DO NOT like the discrimination that PALS face throughout the United States. We are merely a statistic to nearly every neuro, and I have been to about 5 clinics in the United States. Once diagnosed, clinics only offer palliative care, and refuse to even write off label drugs which may help with symptoms. In MY OPINION, they are useless. Furthermore, I want to spread the message to PALS that this disease does not have to be fatal if they opt for a vent and peg, and I am tired of how it is treated differently than a high SCI.
 
This is a hard one to follow but I'm certainly glad I've gone to the VA ALS Clinic in Indianapolis IN., I otherwise woulld have gone to I.U. in the same city. I also have a 3 hr drive but the VA houses me in a very comfortable room w/all the amenities. I have someone travel with me to help & to take notes. I have felt nothing but caring & concern ( not pity ) from everyone I've come in contact with. Rilutek was mentioned only once & she mentioned the only extension of life was on the end & I may want to think about quality at that point. We all have are line that we draw in the sand ( not saying I may not redraw it a couple of times ) I was fairly sure I wasn't going to get the peg, but my wife is in end stage Alzhiemer's w/no ADL's so I don't want to go before her ( the micro manager in me ) so that may determine how many times I move the line. That & I have designed the bulk of our assets with me being the last to go.
I see them every 90 days but they call or email to check in. They have sent home more devices even when I've turned them down saying this way I will have them when I need them. My mom passed away last year so I have all the walkers, cane's when I need them.
I didn't plan on rambling on but to the question I'm sure glad I went & she should give it at least one visit.
Thank for reading
Allen
 
fighting attorney has his opinion and I have mine. been attending als clinic every three months since day one. over 3 hours away, overnight stay. they have become extended family. learn small tidbits of info each visit I can pass on. completed two drug trials. last trial lasted a year now on off label of same medicine almost a year. I live with als and not angry with everything. I have been taken to the woodshed more than once on this site but I keep coming back. I do note recently DX PALS are more willing to try something that three years ago I was criticized for even suggesting. back to the thread go to the clinic at least once with an open mind. side note, I do slip around and talk to other pals, then ushered back to my room, have found all want to talk
 
especially for new pals and cals, a clinic visit or two is very important for learning about the disease, getting equipment and deciding on drug trials. my husband goes once a year, and really, we probably will not go again because we don't get much out of it anymore. I agree it is palliative care, but you can also get in drug trials thru your clinic.

at both our clinics (Mayo and then Suncoast) we had a neuro who wrote a off label script for something we wanted to try. Both clinics are very up beat and positive and helpful.
 
I had my diaphragm pacer installed on 9/25/13 it is hoped that it will extend the time by about 16 months before I will need to go on a full vent. To be honest I hope it will be much longer. But if and when that time comes I really don't know what my choice will be. I do know I don't have the financial means for the required care. I think that's one reason ALS is considered terminal who the heck can afford it. The one the we should fight for is care services for those who can't afford it.
 
Patrick123, I agree with you that costs should be covered for Pals, and I am working on it right now. I will say this the cost to vent is not quite as outrageous as you may think it is. In my opinion, ALS should not be considered a terminal disease. I fortunately am in the position that I can afford the best care possible, and I am going to try to make it that way for everyone. The Pacer may buy you even more time, some reports up to 36 months. Best Regards,
 
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