Re: cbgd support- MSA support

[Guest guest]

Hello, Pam,

There is no need to apologize in any way. Your response to Misty

was right on target and I, too, am very hopeful that she consults

with her husband's doctors immediately. My concern was that,

perhaps, MSA suport members would think that their cbgd relatives

are dropping the ball in these matters. I am so proud of our

members, of all that they give to each other so willingly, I just had

to respond in order to let all of you in the MSA group know a bit

more about us.

We are all interconnected in our Parkinson's Plus disease group. I

believe that sharing information among us is very helpful and

necessary. About the only thing I would like to emphasize about cbgd

is that it is so rare and unknown in our world-- even many of our

doctors have very little knowledge about it, how to treat symptoms in

a way that will not further damage a cbgd'er, etc., that most cbgd

families feel absolutely isolated. You will never find a cbgd support

group that actually meets anywhere because you would not have enough

cbgd diagnosed patients in one given area to participate. Our group

was formed by Theresa , who journied with her father down the

cbgd path before us. Her purpose was to give families living with

cbgd a place to go to be with others who are experiencing cbgd. It is

Theresa's wish to break through the isolation that cbgd brings by

offering to every cbgd family participation in this support group.

The only given rule about cbgd is that no person's path is the

typically the same, until you come to the end of life chapters. Some

may present certain symptoms, others do not. Some may experience

great pain, others do not. Some benefit from certain drugs and others

receive no benefit at all. It is a constant guessing game for

cbgd'ers and their doctors. The fact that you cannot be absolutely

sure your loved one had this disease until a brain autopsy is

performed tells the story in all of this.

I am so sorry that your mother-in-law possibly met her death because

of untreated sleep apnea. I can only imagine the sadness that you

must feel when you think that had it been treated she would be with

you today.

Again, no need for an apology whatsoever. The cbgd support group is

160+ strong. Many of our members are lurkers, some members are

cbgd'ers and others are caregivers. We have members are from all over

the world in this support group. We welcome those of you from the MSA

support group to ours at any time!

e Manion

> Hi e,

>

> I'm subscribed to the web-only version of CBGD. I saw your long

note later

> to Misty under a different subject heading. I did see you had

mentioned

> sleep apnea. In my note I was expressing concern to our group and

trying to

> encourage them to participate in more cross posting to offer our

experience.

> I didn't intend to offend anyone on your list. My mother-in-law had

sleep

> apnea that went untreated, I'm convinced it was the cause of her

sudden

> death. For this reason I tend to notice this symptom and I do my

best to

> encourage people to have it looked after. I sincerely apologize if

I've

> offended you. You do a wonderful service for your group.

>

> Regards,

> Pam

>

> cbgd support- SLEEP APNEA

>

>

> > Pam- You responded to Misty, a new cbgd support group

> > member whose husband has been diagnosed with cbgd,

> > along with an additional diagnosis. You posted to our

> > group telling Misty that the symptoms she described

> > were those of sleep apnea. You indicated to the MSA

> > support group that no one from the cbgd support group

> > responded to Misty and informed her of this, including

> > the need for her to report this situation to her

> > husband's doctors.

> >

> > I did! I wrote to Misty this weekend, immediately

> > after she has posted. I wrote a very long response,

> > numbering information in accordance with all of the

> > concerns she raised in numerous e-mails about many

> > symptoms and situations she has witnessed in her

> > husband. I indicated to Misty that the sleeping

> > disturbances she described were, as I thought, those

> > of sleep apnea, which could be fatal and to please

> > contact her husband's doctors right away. Perhaps for

> > some reason my very lengthy, blow by blow reply to

> > Misty was not included in a digest from our group to

> > you.

> >

> > Please understand that we welcome members of the MSA

> > support group to the cbgd support group. There is a

> > great deal of experience, knowledge and familiarity

> > with cbgd and other Parkinson's Plus diseases that is

> > shared in our group. We also have the great privilege

> > of having a medical expert, who is very experienced

> > with Parkinson's Plus diseases, who subscribes to our

> > list. Dr. Hall has been known to step in and give us

> > accurate information and advice as she " reads " the

> > need.

> >

> > I felt it was extremely important that the MSA support

> > group understand exactly what occurred in this

> > situation. Good heavens, to not have replied to this

> > MSA posting would have been very unfair to my fellow

> > cbgd group members. The MSA support group would have

> > been left with an incredibly inaccurate perception of

> > the capabilities and knowledge of these good people.

> >

> > e

> >

> >

> > __________________________________________________

> >