Re: Mayo Clinic - My experience there

[Guest guest]

,

Thank you for sharing your sister's and your experience with the Mayo

Clinic. It is nice knowing how good you were treated except for your

sister's fall on her head. I am sorry that your sister's health is

deteriating so fast. She is fortunate to have such a loving sister.

God Bless,

Belinda

> 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)