Ongoing Care - Neurologist or Physiatrist

[BetteWheels]

I am writing for my mom who doesn't use a computer. She is a T5/6 Paraplegic since 1975 and is 78 years old. Located in San Diego.

My mom has been struggling with healing a pressure sore on her right ischium. I won't get into details on this post about the wound...I will most likely post about that separately.

My question is about preventing future problems and best preparing her as she heads into advanced age as a long-time paraplegic. She was only 32 when injured and has been healthy, independent and active. Other that this pressure wound, she is in good health.

She has a Medicare HMO and I feel that her primary care doctor, while well meaning, has no experience dealing with SCI, especially in older adults.
It was recommended to me that she should be consulting with a specialist in SCI who can help her navigate current issues as well as those that may be coming up in the ageing process.

Do folks here see a neurologist regularly? Or a physiatrist or Physician of Mobility and Rehabilitation? I think she needs a seating evaluation and also hasn't had a new wheel chair in a decade. Her primary care doctor doesn't have a clue about these things and I don't think is equipped to help my mom stay healthy as a paraplegic.

Any additional advise on what you do to make sure you stay in good shape. She eats well, checks her skin often, off loads (although probably not enough), has a good Roho cushion.

Thanks.

[SCI-Nurse]

Where is your mom located (country, state, region)?

A neurologist would not be a good choice; they are best at making diagnosis but have little or no training in long-term health needs nor rehabilitation for people with SCI. A good physiatrist who does primary care or who would consult with her primary care physician (an internist, I hope, rather than just a GP) would be much better, and ideally a physiatrist who is also board certified in Spinal Cord Medicine. Unfortunately many such physiatrists do not do primary care, or work only in the VA system.

You can ask her primary care physician for a physiatrist referral, but if you are in a rural or remote area, it is likely you will have to travel with your mother for to see such physicians.

You can also search for physiatrists here:

https://members.aapmr.org/AAPMR/AAPMR_FINDER.aspx

and for board certified physicians in Spinal Cord Medicine here:

https://www.abpmr.org/PhysicianSearch/Search

(KLD)

[BetteWheels]

Thank you! Your advice regarding a neurologist vs. physiatrist was just what I was looking for.
I added her location, San Diego, CA, to the original post.
Any suggestions for SCI docs in the San Diego area would be appreciated. I would love to find a Physiatrist who could also be her primary doctor, but will also be happy just to find a good physiatrist. I will also use the links you provided.

[hlh]

I agree that a physiatrist is the right choice.

My Dad is a 77 year old para, and I recommend she keeps working with her primary card doctor as well as a physiatrist. Fewer things will fall through the cracks that way.

[SCI-Nurse]

Thank you! Your advice regarding a neurologist vs. physiatrist was just what I was looking for.
I added her location, San Diego, CA, to the original post.
Any suggestions for SCI docs in the San Diego area would be appreciated. I would love to find a Physiatrist who could also be her primary doctor, but will also be happy just to find a good physiatrist. I will also use the links you provided.

See your private messages.

(KLD)

[ancientgimp]

I am 75 and a para since 1970. I recently hooked up with visiting physicians. They have referred me to a certified seating and mobility specialist who pressure mapped me, scanned my current Ride Design cushion and is ordering another - all services provided via home visits. They also referred me to a wound care clinic when I developed a sore. I did have to travel to this clinic but I was also referred to a nursing service that sent wound care nurses to our home twice weekly until the sore resolved. You may not necessarily need a physiatrist as much as a doctor attuned to the needs of geriatric, disabled patients.

[triumph]

I googled visiting physicians in San Diego and there's a service listed: Home Physicians Medical Group, Inc. @ phone 888-337-3627. (I use Visiting Physicians Association, which is not listed for California.)
It might be worthwhile to see if your mom would benefit from this type of service, especially since she's entering more advanced years. I am so grateful to use VPA - I've gotten great medical care.

[BetteWheels]

Ancientgimp, may I ask what you use for insurance. Straight Medicare with a supplement? A Medicare Advantage HMO? She currently has a Medicare Advantage HMO which I find very restrictive for her, but it does offer a critical care manager RN who coordinates a lot of services for her. We are considering moving her back to Medicare if she is approved for Medicaid which could be used as her supplemental insurance I am told. I am just not sure how in-home care, like Visiting Physicians, is coordinated. Is this something you coordinate on your own?
My mom definitely needs to be sent to a certified seating a mobility specialist.

[BetteWheels]

I googled visiting physicians in San Diego and there's a service listed: Home Physicians Medical Group, Inc. @ phone 888-337-3627. (I use Visiting Physicians Association, which is not listed for California.)
It might be worthwhile to see if your mom would benefit from this type of service, especially since she's entering more advanced years. I am so grateful to use VPA - I've gotten great medical care.

Thank you! I will check into that. May I also inquire if you have straight Medicare with supplement or use Medicare Advantage HMO?

[ancientgimp]

Ancientgimp, may I ask what you use for insurance. Straight Medicare with a supplement? A Medicare Advantage HMO? She currently has a Medicare Advantage HMO which I find very restrictive for her, but it does offer a critical care manager RN who coordinates a lot of services for her. We are considering moving her back to Medicare if she is approved for Medicaid which could be used as her supplemental insurance I am told. I am just not sure how in-home care, like Visiting Physicians, is coordinated. Is this something you coordinate on your own?
My mom definitely needs to be sent to a certified seating a mobility specialist.

We have Blue Cross as supplement but it almost never comes into play. Just yesterday my wife (also chair user) had an echocardiogram in the living room.

[BetteWheels]

We have Blue Cross as supplement but it almost never comes into play. Just yesterday my wife (also chair user) had an echocardiogram in the living room.

Amazing! Thank you for the suggestion. I will investigate further for her!

[triumph]

Thank you! I will check into that. May I also inquire if you have straight Medicare with supplement or use Medicare Advantage HMO?

I have Medicare as first provider, then Blue Cross (employer-provided for retirees). The Blue Cross kicks in payment on rare occasions, but once covered a $1200 brace that Medicare would not cover as it didn't meet their timeline for replacement.

[BetteWheels]

Thank you, Triumph!

I have Medicare as first provider, then Blue Cross (employer-provided for retirees). The Blue Cross kicks in payment on rare occasions, but once covered a $1200 brace that Medicare would not cover as it didn't meet their timeline for replacement.