Re: Re: cbgd support- MSA support

[Guest guest]

Hi e,

Oh dear, I'm sure no one thought that about your group. My comment

yesterday was not meant to be critical of your group in anyway. We all

know how overwhelming it can be sometimes to keep up with new members and

try to give them as much help and support as we can. We're all volunteers

here and our time is limited. We all care deeply though and that's what

counts. Your group and ours has alot in common. The isolation, the

frustrating searches for a diagnosis or just a doctor who will listen.

There is also no clear course for MSA and no two people ever have the same

set of symptoms. The bit of literature that there is out there on MSA is

often confusing and misleading particularly the ones that attempt to

predict the duration of the disorder. We know from experience from people

who've come through this list that it's possible to live over 20 years

with MSA yet newcomers often read 7 to 10 years and think there is no

hope. We know that staying on top of the symptoms, working with your

doctors, exercising and taking medications all contribute to quality of

life and can even extend life. Although there has been a US national MSA

support group for several years it has operated very informally. In the

past year or so, Don Summers has become president and is attempting to

give MSA a higher profile. Through this email support group we've been

able to connect people in the same local area with each other and now

there are some local MSA support groups forming. I'm sure CBGD patients

and caregivers would be most welcome to attend those meetings and to work

with MSA support group leaders as well. We're all in this together and

helping each other is what it's all about.

Hugs and best wishes,

Pam

e Manion wrote:

> 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

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

e,

While we don't have a lot of local groups, we do have some for MSA. Many such

as the Washington, DC group have so far only been " support " in meeting to share

feelings and concerns. We seem to share most of those problems with cbgd

patients and caregivers. I am sorry to say that while I know quite a bit about

MSA and PD, I have heard very little about the other PD Plus disorders. If you

have any members in the Washington, DC metro area, we would love to have them

come to our meetings. We tend to have informal meetings at parks or public

places such as malls, and mostly spring and fall as weather makes it difficult

for the patients in summer and winter.

We do piggyback on the local PD support group for meetings where they have

someone from NINDS at NIH or other research people speak. There are often other

caregiving talks either through PD groups, Agency on Aging, AARP and other

meetings that we watch for.

I'm sure that you could pass on the list of regional or local MSA groups and we

would be glad to have them attend. We do have many of the same difficulties.

Late stage PD patients also seem to share these same problems. Some of our

greatest concerns now, is how do we get some sort of " maintenance " physical

therapy, is that also a concern to cbgd'ers?

Anyone interested can join our group (I send about 1-2 emails a month) by asking

me at bwerre@... (warning that may change after March 1, 2001.

Take care, Bill and Charlotte Werre