Multidiscipline person?

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bhg

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Sep 25, 2017
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72
Reason
PALS
Diagnosis
09/2016
Country
US
State
California
City
Cupertino
I’d like to hear some pros and cons of the idea of having a 'multidiscipline person' to augment Clinic, one who makes house calls?

I could see someone with OT background learning PT and speech as they relate to ALS, even respiratory if there is a portable machine to test. Seems like it would be helpful to see the patient in their home setting, once the meds are straighten out. How realistic is this? Would it work?

Thx, Betty
 
Mass general has a housecall program. The team started ( I think) with an RN who had been working in the clinic for some time and someone from CCALS which is a patient services charity. There is now a nurse practitioner who does the calls. This isn’t what you are talking about but I think accomplishes much if not all of what you say. The np can set up video calls with the clinic doctor , pt etc as needed. They can also call in vna specialists to do on site visits If needed
 
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Hi Betty,

We were very fortunate that our local ALS clinic had a primary care physician who was part of the team. My wife switched over to her as her pcp about a year in. My wife saw Dr. M on clinic days at the center initially and Dr. M made many house calls for a wide range of ALS related issues as well as ordinary medical issues for several years. For those last 3 1/2 years or so, we didn't have to travel for a single doctors visit. We went to the hospital for things that required us to be at a specific facility, but for pretty much everything else, including trach changes, the doctor came to her. We always had respiratory therapists, OTs and PTs that would come to our home. It's doable. I hope your the folks at your clinic can help you find a physician and others who could do similar.
 
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We have home visits but they are for basic recovery or hospice. When I used them a few years ago, they admitted knowing nothing about ALS. Now that I am losing my voice it will be even harder to explain things. Thus, the fantasy of having an ALS-specific person who knows me, my lifestyle, my UMN dominant spasticity, etc. I like my primary, so will try that route. She is the one who arranged the home vaccine shot.

Nikki, I learned about CCALS thru the forum awhile back and looked into it. That’s what got thinking…..

Thanks, Betty
 
Thank you both. Working thru my pcp I now have Clinic’s attention. A pt and ot will be coming to my home to evaluate. As progression speeds up, things are getting complicated.
 
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