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glupavomomiche

Distinguished member
Joined
Sep 25, 2011
Messages
282
Reason
PALS
Diagnosis
09/2011
Country
US
State
Texas
City
Podunk
Wow, I joined this site ages ago but the powers that be would never fully authorize my account so I could ask the millions of questions I have. And suddenly today, I can post?! This is my first post (showing my Captain Obvious badge here). So, hello!

I'm 32 years of age and all this mess started back in February 2010 (and I was a typical macho American and didn't see a doctor until that December). Even though I was officially diagnosed in September (and again last week for my own peace of mind as well as that of BCBS), I've been hearing the ugly letters since June. So... I have not actually been to an ALS clinic appointment at this time.

What I want to know is... are there any pALS that have NOT gone to clinics at all?

The clinic about a 4 hour drive from where I live, and it's a pain to get someone to take me (can't drive that far by myself... too gimpy already). Did I mention I HATE travelling? I have an EXCELLENT neurologist in this town who is fresh out of four years working in the ALS Clinic at Emory (he's a big time hot shot doc, not your local yokel headache, stroke, and dementia guy... he came here to join his parents' neurology practice like a good son). I trust his judgement and he's very proactive... on the Rilutek, had the spirometry and MBS, going to speech therapy already, have an orthotist and a KAFO, etc. Yes, he would like for me to go to an ALS Clinic, so I'm trying to feel out if not going something I can try to push for or not. I'm extremely curious to hear your thoughts and experiences in this department, regardless of your country of residence, age, and point of progression.

Thank you and looking forward to you all getting to know me ;) Oh yeah, and getting to know you too!

~ Sarah :D
 
Before you stop going to the clinic, I would make sure that you add an excellent pulmonologist to your list of support. That will be the most important doctor in the end for ALS because the muscle problems are really something they just manage but can't really stop from regressing. The breathing becomes the primary concern as this disease gets hold. The nearest ALS clinic for us would be almost a 2 hour drive. My husband would definitely not be able to make the trip. We haven't been to clinic since February of this year and he is managed pretty well by his primary doctor and the pulmonologist. If you are considering a feeding tube, you would also want someone comfortable with performing that surgery.
 
Sarah

I am in the same boat you are, the ALS clinic in Jacksonville, Fl is about 5 hours away. They actually called me yesterday to ask if I wanted to be part of a short 5 week trial, that would require me to go there 3 to 4 times a week. I decided not to. I did however ask them to get me into the next ALS clinic. Maybe others on here can explain it better than I as I haven't been yet and will go in Jan or Feb. However I understand I go there in the AM and go to a room and then the Doctors come to me. All of them, speech therapist, Physical therapist, etc etc I havent gone up until now because I have been progressing slow, however as i start to loose strength in my arms and legs I want to go. I will let you know my experience once I attend, I hope this helps.
 
I am about 2 1/2 hours from my clinic in OKlahoma City. I go every three months and have really been helped in the ongoing phases of ALS. They got me started on a non-invasive ventilator early which has helped me get better rest and have more energy. Put me in AFO's ( leg and ankle braces) to help me walk a little more stable and possibly keep me from falling. As i got weaker they got me in a power chair, and helped with all paperwork. The clinic is very helpful and I would say if possible for anyone to get involved with one. They are definelty on our side in this fight. Good luck.
 
We found it a waste of time at the local(Reno) clinic, but the one 5 hours away in San Fran was better. If you want to do any research trials you will need to go to the clinic. We had doctors through the VA, so didn't feel the need for clinic. When we did the San Fran clinic it was too long of a day. 10 hours of driving, plus the 3+ hours at the clinic.
 
Sarah,
Bummed for you about the diagnosis; sorry. Obviously I can't tell you what is best for you, but I had my first clinic appointment this week so I'll tell you what I can. My appt was at Duke Univserity, which is less than an hour from my front door.
1) Knowledge is power. Unless you have a crystal ball to help you, there's no better place to get that knowledge than from a group of professionals who see ALS patients all the time. And to make one appt and see all the required specialists at the same time & place was invaluable. I can only imagine that will be more true as the disease advances. (I refuse to call it "progression"!)
2) If a "big time hot shot doc" who recently came from the Emory ALS clinic suggested I go; I'd go. What are you paying him for if not for his wisdom, advice and recommendations?
3) You don't hit any of the pitches you don't swing at! Go once and, after that, if you don't think it's for you, at least that thought will be based on something more than the pain of a 4-hour drive! I'm not discounting the hassles of the travel, but I think the benefits outweigh them.

In any case, best of luck to you. Angers me that someone so young has to deal with this...
 
If you expect solid information at the clinic about your "status", longevity and general progression, I am aftraid you will come away disappointed. I was told at the first visit that progression is somewhat liniar and that once they have charted several points they can see how things will go. Well; maybe this is true, but I cannot get anything but generalities after three clinic visits.

On the other hand, being able to schedule with other specialists on the same visit as you come to need them is a really great service.

- Jerry
 
Hi Sarah,
Welcome and I'm sorry you have to be here.
I went to 1 clinic in July. Haven't been back since. Nice bunch of folks but I'm progressing slow, on the dex trial and was a former Speech Therapist that worked with swallowing issues in a nursing home.
In the long run these people will help you. I would see a ALSA social worker and set up an appointment.
Personally, this forum has answered more of my questions that everyone at the clinic including the Neuro.
Take care,
Susan
 
Clinic is such a personal call and find it to be very polarizing with pals and cals. For my husband who was diagnosed April 2010 @ Johns Hopkins In Maryland (3 hour drive from our home) we found it to be not of our liking. When we learned of a clinic 30 minutes from our home we tried there. The closer clinic is not doing any trials but my husband who will turn 69 on Monday was not interested in that. Our goal for clinic was to meet with OT, PT, Respiratory specialists, speech therapists, neurologist and a wheel chair salesman/technologist. Think of it as one stop shopping. You have all of those minds in one place and THEY COME TO YOU WHILE YOU SIT IN A ROOM. Take a binder as I did and organize it into their specialties (they all compliment me on my organization skills). They have resources that they can set you up with, they pull out their phones and get you answers "on the spot" they can set you up with your ALS loan closet coordinator. There are just innumerable pluses. Now, when my husband advances to where it is not an feasible option to travel there, we will re evaluate.
 
I am fortunate to live near a certified ALS clinic. My husband and havegone to it for two years. The staff is awesome. They have given us advice and support. I attend every three months. I knew this clinic was more than a job for them. I saw that demonstrated twice in last two months. Many attended the ALS walk and the funeral for a pal who passed a few weeks ago. Their compassion to help us deal with disease is priceless.
 
Thank you all so much for your input! I feel better now about at least giving it a shot. I was afraid it was going to be like attending one of those time-share condo meetings... free food, door-prizes, and oh yeah, you can't leave until you sign your life away. I will certainly give it a go, but great to know that if it's not for me, that's ok too.
 
I just read your answer about clinic and I had to reply! My husband felt the same about the ALS Support Group - he was afraid someone was going to break into Kumbaya. Needless to say, that has not happened and he's the one that insists that we make as many meetings as we can!

We are part of the Dex trial and have come to know and love the individuals that work with us at Emory.
 
I love my Virginia Mason ALS CLinic....top notch experts that really know what they are doing....they help me stay ahead of this disease so now i have a bipap, cough assist, suction machine, dynavox Maestro speech machine, a power chair (Permobile top notch!), and a walker, shower bench....a peg tube with a fantastic backup folks if I have any questions...I feel confident because of my ALS Clinic...
 
Well, bit the bullet and went for it! I saw Dr. Jackson in San Antonio today and I'm scheduled to go to clinic on March 28. It's a 5 hour drive and overnight stay, but hopefully it will be worth it!
 
You will probably find it worth it. I am lucky to have one 30 minutes from home. I have my first appt on feb 16. but already recieved a sliding shower chair, drop arm commode and tiny wheel chair that fits thru my bathroom door. I received them in less than a week of my request. I certainly could not afford these items and am so thankful for their early help before even meeting me.
 
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