Mayo Clinic - My experience there

[Guest guest]

My sister was flown by emergency air jet to the Mayo Clinic. Even

so, the clinic would not admit her.

That time, we stayed at one of the hotels which was connected by

underground tunnels. My sister was tested for 3 days, before

receiving the diagnosis of MSA from Dr. Low. We stayed at the Mayo

for an additional 3 weeks, so that she could visit with as many of

the Mayo doctors as possible, to try to figure out ways that to treat

all of her symptoms, and to figure out an appropriate medicine

regime. The last test that she had during that visit, was the sleep

study, which was a disaster for her, as the technician let her fall

on her head. After the experience of the sleep study and the fall on

her head, my sister was ready to leave the Mayo. She then spent 2

months at my home, to regain some strength and get her daily routine

down. After 2 months, she was able to walk again, and we sent her

home to New Mexico, with everything in writing, so that her New

Mexico caregivers would know how to handle everything. We even taped

her physical therapy exercises, so that she could do them while

watching the tape.

Except for the fall, the Mayo Clinic was an amazing place, full of

patient, kind, doctors who used their expertise to offer us a crash

course on treating the symptoms of MSA. My sister had been to 20

different doctors, mostly in New Mexico, and one in Chicago, before

Dr. Low diagnosed her MSA. We will always be grateful to Dr. Low,

and everyone who helped us at the Mayo Clinic.

Most recently, my sister has become very depressed about her new

life, and she has decided that she cannot accept her diagnosis. She

cannot imagine living life the way that she has to live it, for much

longer. Dr. Low has ordered her into a hospice program. She has

signed papers for Dr. Low, so that he may receive her brain and her

spine, within 24 hours of her death. Dr. Low and the Mayo Clinic are

committed to their research in discovering a cure for MSA. Dr. Low

feels very bad that he cannot cure my sister of MSA. We are hoping

that by studying her blood, and her brain, and her spine, new light

may be shed on the causes of MSA, and that increased understanding of

the condition may someday help to lead to a cure.

There are plenty of hotels in Rochester. The second time we went

there with my sister, 2 months after her diagnosis, was for a

medicine study. That time my sister was hospitalized in St. 's

hospital, and we stayed right across the street from St. 's,

which is a little over a mile away from the main hub of the Mayo

Clinic, where all of the doctors offices are located. There are

shuttle busses which took us back over to the Mayo's main building,

though, which we used for visiting the pharmacy for meds and other

supplies.

Wherever you go, near the Mayo Clinic and adjoining hotels, and also

at St. 's Hospital, there are plenty of wheel chairs, which are

available for you to use, if you need them for your patient. All

over, you see family groups walking, with their patient in the middle

of the group, in a wheel chair, or sometimes there is just one person

wheeling their ill loved one. Rochester caters to the families of

the patients, with many restaurants and everything you need, if your

stay turns out to be longer than anticipated.

After a long time and many futile doctor appointments, the Mayo

Clinic was the best place for my sister to go. They knew all about

MSA, and they enabled my sister to live for the past year, in spite

of her rapidly progressing MSA symptoms. We have kept in touch with

Dr. Low by telephone and emails, for continuing care for my sister.

He has remained her primary doctor for almost one year. If she is

able, my sister is going to visit Dr. Low for a checkup, in June.

I pray that any one who goes to the Mayo Clinic might be as fortunate

as we were, in getting help. It's an incredible place, full of

doctors and support staff who are knowledgable, compassionate and

sources of hope for many people. Let me know if there's anything

else that I can tell you. As you see, I can be rather lengthy in my

postings here. Sorry..... - (pistachio53)