Any experience with Scottsdale Mayo?

[Drewsmom]

Husband was accepted and has an appointment this summer with Dr Ross. Just wondering if anyone has experience with that facility or doctor.

He was reevaluated by his physical therapist yesterday and is weaker than when he began PT 3-4 weeks ago. His spasticity in his legs seems to be increasing and yesterday we had to get a manual wheelchair. This is a scary journey.

 

[MaxEidswick]

>This is a scary journey

Sorry, I can't help on this one, but our thoughts are with you. You might review the DIHALS stickies to see what symptoms match ...

 

[Atsugi]

The Mayo Clinics have a unique approach to healthcare that is truly patient-centered. We were VERY happy with our experience at Mayo Jacksonville. Ask lots of questions. Don't be shy. It's a wonderful opportunity.

 

[MaxEidswick]

>Beatles always get me off to a good start. But what's even better s the old tune, "It's a Beautiful Morning."

off to youtube, thanks Mike ...

The Rascals - It's A Beautiful Morning - YouTube

 

[DreamsEnd]

Last time I searched Phoenix area a couple of weeks ago there were at least 5 ALS clinics at major facilities in
the Phoenix area. I've seen it recommended that PALS go to a multi-disclipinary
Clinic where you see all the specialists at once. Also waiting until Summer
seems quite long if he's progressing rapidly. If you have options, you might
want to consider others.

 

[MaxEidswick]

>I've seen it recommended that PALS go to a multi-disclipinary Clinic where you see all the specialists at once

That's the way Appel's clinic does -- takes a full day, but we visit with our peers and gain other stuff, too ...

 

[Drewsmom]

Well it looks like he will get to go to Jacksonville now because they can see him sooner. We found a different neuro locally who diagnosed him with PLS. I am still not sure just because he does have muscle wasting and his progression has been rapid. But at least he finally has a local physician who gets it. I would have never dreamed this journey would have been this frustrating.

 

[krnNdug]

I was scheduled to go to Scottsdale Mayo clinic but got into the MDA ALS Clinic ar barrow Neurological. They are great and I am glad I went. MDA takes care of my copays so I don't pay anything for my visit and they help process any stuff I may need from power chair to adaptable vans and anything. Good luck with Mayo, I have heard good things about them but wanted you to know there is anther excellent option in the Phoenix area.

 

[DreamsEnd]

I was scheduled to go to Scottsdale Mayo clinic but got into the MDA ALS Clinic ar barrow Neurological. They are great and I am glad I went. MDA takes care of my copays so I don't pay anything for my visit and they help process any stuff I may need from power chair to adaptable vans and anything. Good luck with Mayo, I have heard good things about them but wanted you to know there is anther excellent option in the Phoenix area.

So happy to hear you are pleased. Forgive me please, because I don't know all the terminology, but are you retired military and use Barrows instead of the VA? I've been researching options for my husband as we're returning to AZ as his disease progresses and the VA System there scares me. We won't have a year to wait.

Thank you,
Sherry

 

[MaxEidswick]

>I've been researching options for my husband as we're returning to AZ as his disease progresses and the VA System there scares me. We won't have a year to wait.

if you are VA, get aligned with the PVA ASAP ... miracles do happen!

 

[krnNdug]

No, I am not military. They people at Barrow are great! I am pretty sure you need to get a Dr. referral. They only do the MDA ALS Clinic on Mondays. They will see you any day, but the clinic is only Monday.

Sherry, I don't know if there is the ability to private message me, but if you can, I will get you my number and the contact people down there. This is still new to us. We met a friend at church who lost her husband in 2011 from ALS and they are very close to the people at the clinic. She also lobbies for ALS on Capitol Hill. That is how we got in. I will email the RN and ask if there are any special things you need to do to get into the clinic at Barrow.

I have friends who have been affected by the Phoenix VA problems. I would think that now would be the best time to go as they will be on their best behavior, but one never knows. Thank your husband for his service please. I am an Army brat (and grandson and great grandson of Army guys).

 

[pearshoot]

the VA does not operate a multi-discipline clinic....the best help you can receive is a good multi-discipline clinic....DREAMS END...I know who you are and my prior advice stands....with what you have no co-pay...SUCCESS

 

[DreamsEnd]

I thought I had sent a PM to a member on this forum in the past but can't seem to find out how to do it now. Has something changed?

Max, your posts are so inspiring. You give so much.

Yes, I know with our insurance we can go anywhere for care but it's our understanding that we'll need to be in the VA System to get to the prosthesis dept for eventual mobility devices provided by the VA that we would have to pay for out of pocket? I understand the value of a multidisciplinary clinic but thought we had to go to the VA? We have a good friend, non-PALS who has had four brain surgeries at Barrows and swears by their expertise.

We do have contact with a PVA for when we return to AZ who has given some good advice so far. Since we moved from one region of the country to return to AZ, we changed PVA's. We found conflicting information.

An amazing guy we have been out in contact with who is I vet with ALS tells us different information.

Sherry

 

[Nikki J]

Sherry I think you might still need a few posts to pm but even if you can pm you will not see the option for people without the ability like krNmdug who is quite new. Sorry. If you have insurance to cover Barrow you should be able to do both. Go to Barrow for their awesome clinic and neurologists and also have a relationship with the VA so you can get all those benefits. I know lots of vets who have a community physician who really manages their care but go to the VA so they can get their meds through the VA

 

[Nikki J]

Here is a link for Barrow with contact information
ALS Clinic