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    • #14283
      Nancy
      Participant

      I was diagnosed with ALS about six months ago. It seems to be progressing slowly for now. Currently the closest multidisciplinary ALS clinic is a nine hour drive and the closest support group is two hours away, in good weather. Another potential complicating factor is that we live in an area of the country that experiences winter five months out of the year, making transportation difficult.  We are trying to evaluate the pros and cons to determine if during these early stages of ALS there are advantages to relocating, either full-time or part-time, nearer to a multidisciplinary clinic.  I would be interested in reading anyone’s thoughts on the advantages or disadvantages of living closer to a multidisciplinary clinic and how important/useful/helpful it is to be closer to a clinic.  Conversely, I would like to hear from anyone who did not relocate closer but in hindsight think they may have had better ALS management if they had.  Thank you.

    • #14317
      Sheila
      Participant

      Nancy, I have been to 3 different clinics, 2 of them are ALSA accredited whereas the one where I currently live is not.  The difference seems to be in the number of “professionals” participating, the current clinic doesn’t have a dietician, occupational therapist or social worker to meet with.  I haven’t found the clinics to be particularly helpful other than I like to hear the areas there hasn’t been progression (although I know where there has and has not been progression, it is my body after all) it feels good to hear it.  I recently attended an ALS conference where I was able to talk with pALS from all over the country, I learned all clinics are not created equally.  Several pALS said they leave the clinic feeling hopeful and with suggestions and/or medications (both prescription and OTC) to try.

      To answer your question, yes I would relocate or travel to a clinic where the neurologist doesn’t just measure disease progression, but rather is up to the minute on latest trials and meds that may help, and willing to think outside the box!

    • #14832
      Joanne Langfitt
      Participant

      Nancy, I was diagnosed in November 2019.  Fortunately, there is an FDA approved ALS Clinic about two hours from me, and I attended my first Clinic last month.  The clinic members were numerous, positive, and very helpful; I only wish we met with them more than quarterly.  Given the time frame between clinics, I don’t know if I would relocate.  My clinic has a Mychart website, and I can ask questions of my clinic providers by email.  They generally get back to me within 2 days, and sometimes respond by telephone.  I have found that the information on the alsnewstoday.com site is extremely helpful as well.  That said, the clinic is cutting edge, and has close ties to many, many experts.  Bottom line, of course, is what works for you.  If you are going to move closer, pick a location that you will love, like mine in Charleston SC, one of the most beautiful and climate friendly cities in the nation.  Best to you.

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