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BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
634
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
For those of you who have been diagnosed at least 1 year, how often do you go to clinic AND how often does your neurologist ask you to come to clinic? Since diagnosed, Bedlack wanted me to come every two months. I said no and came every 3 months, 3 times. The last clinc was 4 months ago. I supposed to go in August but I really don't want to go back. I'm tired of the 12 hour round trip and I'm not sure what else they can do for me. Please share your clinic routine with me if you don't mind. Thanks.

Vince
 
I don't see any neurologist except at the MDA/ALS clinic but I have only ever gone to the clinic when I needed something that I believed required info from someone familiar with ALS.
 
That's exactly the kind of info I'm looking for. Thanks Diane.

Vince
 
I called my own shots from the beginning. I was dx one year ago but had gone through testing for a year prior to that.

Averages every 2-3 months. I live less than two hours away so, for now, it's no big deal. They don't do everything every time....usually only what my doctor and I agree on ahead of time.

I'm always asked when I want a return visit and we agree on it.

I do have a local neuro who will give me Rx for anything I need.
 
Steve was diagnosed a year ago this week. He has clinic every three or four months but does not see his doc in between. He really doesn't want to go but does because it's helpful for me and keeps us one step ahead with equipment. He is fine once he gets there and likes everyone. They have helped him with diet issues and equipment issues. Hopes this helps.
 
Matt was diagnosed 2 1/2 years ago, and we go to clinic every three months. In all of that time, there has not been one appointment where we did not come away with new information, ideas, suggestions, or equipment. Matt also teleconferences with Bedlack monthly or so in between clinic appointments (those teleconferences are through the VA as D r. B is the Chief of Neurology at the Durham Va. I've also dragged Matt in between scheduled appointments to have things checked (one of those unscheduled visits resulted in the Trilogy being ordered).

I think Diane probably has a much better idea of what she might need than most PALS because of her background--sometimes we don't realize there's something we need until someone suggests it.

As with everything else about this disease, I don't think there's a one size fits all schedule. You do what you are comfortable with. A 12 hour round trip drive is very draining. Have you considered the teleconferences? I forget what they call it, but they now do them from Duke also. You can meet with him over the internet if you don't want to see anyone else.

Becky
 
I've been going to clinic every three months for the past 2 1/2 years. I hate going but always come away having learned something. It's only a 45 minute drive for me though, not sure I drive 12 hours round-trip for it. Years what I wrote after my last Clinic.

Clinic Day

Most pAls (person with ALS) have a love/hate relationship with clinic days, and I am no different. My 3 month clinic was this week.

It is mentally and physically exhausting to prepare, attend, and focus for these all afternoon events. Simple things like how long can I go without going to the bathroom become big deals!

Good news is relative, like my breathing has only declined by 4% instead of 10%.

But I am lucky. I love my team.

First they take the vital signs. To weigh me I am asked to drive my monster wheelchair up on a huge scale. The result is I weigh 584 pounds.
I'm not sure how this translates into real weight, as my knees became lodged under the table and applied even more pressure on the scale. Oh well, they seem happy with the result!

The wheelchair guys always have some adjustment they make to help me feel more comfortable. This time they added A switch I can punch to adjust my chair since my fingers and hands no longer work.

The speech/language lady had tips to help me swallow more safely so that I can keep eating real food. This is important because eating has become a challenge to not choke and scare the crap out of me and my assistants.

The pt and Ot advise on the ever changing methods to transfer semi-safely with legs that won't support my weight anymore, 584 pounds is a lot, you know.
They are very happy to hear I am still getting in the pool 4+ times per week.

Pete, the ALSA rep, is there to offer up respite funding, new fancy ramps and shower chairs that tilt and support my head.

The respiratory therapist has ideas to adjust my breathing machine which is now needed 10+ hours per day, and exercises for breath stacking and daily use of cough assist machine so that my lungs which are trying to collapse will function better.

Then my doctor comes in to summarize. It's 5 o'clock now and she's had a long day. I'm her last patient. The first thing she says is, "I haven't had a chance to say f*ck all day". Oh, she knows me well at this point! She is very smart, trained at Duke University under one of the most prestigious ALS doctors, and is quite blunt and to the point. I appreciate this.


The best news she can offer is my breathing is holding steady at 68%. She understands why I don't want to have the feeding tube inserted yet, as I still love my time at the pool. She agrees that beginning the Lunasin trial is a good idea.
She has ideas about making trips to the bathroom easier by having them hoist me in the air and let things fly into a large bucket. We have a laugh about this, because it's important to keep a sense of humor with this disease. I suggest that she give it a try first! We both find that this is a good time to use the word, f*ck.

Rob and I load up and drive home. that wasn't so bad, we both agree. I'm ready to get home, use the bathroom - not ready for swinging in the air method yet, and relax with some red wine. We will do it all again in three months. I'm not ready to quit!
 
Azgirl, you're having problems eating but you're putting off the tube?

You do know that going in the pool is ok once it's healed?
 
Greg,

I know that it is possible to get in a pool after the feeding tube, but realistically I do not think that would happen after taking at least six weeks for it to heal. Also, the way they transfer me from wheelchair to pool lift is by tightly putting on a gait belt and using brute force. Can't imagine doing this with the feeding tube in place. I've seen the Doctor Who does the tube and he says he can get me in with a one-week notice. I understand the risks of waiting, but for me anyway, the pool time is worth the risk. I can still eat normally, but carefully to avoid choking.
 
Steve went every 3 months to USF. He believed it kept hope going, I thought it was a waste of time since they deferred to the VA for everything. Steve saw his pulmo at the VA every 6 to 8 weeks. If he needed to see someone else, rt, pt,ot,dietician,social worker, etc, he would have me send the pulmo and email and it was set up.

The teledoc system is called jabber.
 
We stopped going nearly 2y before Larry died, though all we had to do was walk/wheel there. The clinic called us every quarter to schedule, their default. Eventually they stopped calling. The morphine that eased his final days was written by his PCP, at my request, via online portal.

It is archaic that you should have to show up to get rx, equipment, advice, access to trials, etc. That is all doable online except the evals Medicare requires for power stuff, and endless secure communication platforms. You'd think ALSA might work with payors to justify what would obviously be a money-saving policy (expanded telemedicine reimbursement) that would be more humane for their constituents.

Sadly, it's about billing > care at present, and Vince, no need for you to jump through hoops unless there is value in it. For you and/or your wife. But I follow that with a recommendation that you see a PCP every year (obviously no problem in your case, but writing for others as well) even if you don't need to, for the reason that I outlined above, if, like us, you decide against hospice.

Best,
Laurie
 
The first two years I went religiously every 3 months. It was starting to get repetitious and a genuine pain in the ass.

I haven't been for about exactly a year and don't know when my next visit will be.
 
Thank you all so much for sharing your experiences with clinic. It sounds like the vast majority of you have had positive experiences. In my year of going to Duke, I've never even seen a pulmonologist. None of my other disciplines have ever spent more than 5 minutes with me. Yet I'm sitting in a waiting room, tired, thirsty and hungry waiting at least an hour for each discipline to show up for their 5 minutes. Bedlack goes over my new ALSFRS and out the door he goes. I asked about the telemedicine option but was told Bedlack did not have a license in WV so I could not participate.

After my peg surgery in December my progression sped up quite rapidly. After that happened, I noticed I became a number at clinic and no longer a person. No more personal conversations, no more hugs, just a isolated and sterile experience. You see I can't offer them anything anymore. I'm on the trilogy, my breathing is at 50%, I have a feeding tube. These things all knock me out of any clinical trials so what do I have to offer their research team? Nothing, other than a timeline from diagnosis to death.

I would love to have the experiences that most of you have but I don't. I much prefer to go to my PCP, who knows very little about ALS but always asks me, "Is there anything I can do to make you more comfortable?"

I believe my future needs may be a hoyer lift, and possibly a hospital bed but I have everything else. Pretty sure my PCP can take care of that for me.

Thank you all so much for sharing.

Vince
 
I don't do the clinic. It is available to me anytime I think I need it. I have a great team of medical folks and see them as needed.

So far this has worked well for me, but does result in more of the 4-hour round trip drives to Denver to see the specialist medical folks.

One thought I have is that if I do the clinic, I will only be using the medical folks that are associated with the clinic. I would rather use the diverse team I have assembled.

Steve
 
I like your approach Steve but I think I've developed an aversion to the medical profession. So many have got it much worse than me but ALS aside, I've been through hell with related procedures, Medicare approval, etc. I've just become quite weary.

Vince
 
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