Notes from the Boston Area Support Group Meeting

[Guest guest]

A meeting of the Boston area SDS/MSA Support Group was held on August 1 at Beth Israel Deaconess Medical Center in Boston. Tony and Marilyn Swartz Lloyd, Noreen and her mother Judy, Birmingham and Rob and Carol Langer attended, as well as Dr. Roy Freeman and Chase, Dr. Freeman's research nurse.

Pat Keck, an occupational therapist, spoke to the group about what occupational therapy is and how it can be helpful. She indicated that occupational therapy helps people function in the activities of daily life, but that it also focuses on helping people continue to participate in the activities that are important to them. For instance, if a patient really loved fishing, they would help find a way to modify the fishing rod so that it would allow the patient to continue to enjoy that activity.

Occupational therapists can also tour the home, and assist in recommending modifications to the home to make it safer and more accessible. Pat indicated that although these evaluations tend to focus on the bathroom because that is the site of many falls, that they can encompass the whole house.

Pat gave us several good resources for further assistance. She handed out a catalog from AliMed called "Help at Home" which is full of various devices to help with getting around and with functioning on a day to day basis. There is also a web site, www.alimed.com. She emphasized that before making a purchase of something like a walker or wheelchair that the person should consult with a physical or occupational therapist to be sure that the item will serve the intended purpose.

Pat also highly recommended Easter Seals and Spaulding Rehab as a good resources for all types of assistive devices. She pointed out that Easter Seals has a technology center in Worcester where patients can try various types of assistive devices (from speech enhancing devices to wheelchairs) to see which works best for them. Both have teams that will come to the house to do evaluations and Pat indicated that Easter Seals has good contacts with various agencies to provide financial assistance for assistive technology where there is financial need. For further information, the Massachusetts Easter Seals web site is www.EasterSealsMA.org and the Spaulding Rehab site is http://spauldingrehab.org/home/ambulatory/boston.htm.

There are also private agencies (mostly private-pay) that will provide home evaluations, will hire and supervise contractors, and will provide various forms of assistance around the house from driving to appointments to managing the details of moving to assisted living. One that Pat is familiar with and recommends is called "HouseWorks". They serve Boston and the North Shore -- the web site is www.house-works.com.

The next meeting of the group will be held on Thursday, October 17 at Beth Israel Deaconess Medical Center at 5 PM. We plan to show the video tapes of the About Health show with interviews of Dr. Roy Freeman, Rob and Carol Langer, and Tony Swartz-Lloyd. Also, Pam Bower will be our special guest, as she will be vacationing in the area at that time. Mark your calendars now!

P.S. I have a number of handouts from the meeting -- please let me know if you would like me to send anything to you.

Carol

[Guest guest]

Excellent summary Carol, as always! I'm really excited about attending your next local New England group meeting in October.

Hugs,

Pam

-----Original Message-----From: Carol Langer Sent: Tuesday, August 06, 2002 10:22 AMTo: shydrger list; Zola, ; son, Rick; White, Debbie; Visalli, ; Viglione, Peg; Swartz-Lloyd, Tony; Skillen, Anet; , Noreen; Silberman, Tina; Sabo, ; Rosenberg, Allan; Purcell, Pat; Pollen, Ellen; Podanoffsky, Louise; Pettengill, Jane; Peeples, Judy; Peeples, ; Pearl, Jayne; Park, Joonsuk; Mrowka, Donna; , Kathy; Martignetti, ; Markey, Diane; Markey, ; Macauley, ; LoPresti, Candy; Lockhart, Jean; Jencks, ; Humes, Janet; Foley, Tim; Fenderson, Bob & Margrette; Doneghey, Mason; Coutant, Sheila; Chris; Chase, ; Bynum, Jim & Connie; Birmingham, ; Bessette, ; Barresi, ; Baravalle, ; Anglin, Chris; Hamill; RGGiusti@...Subject: Notes from the Boston Area Support Group Meeting

A meeting of the Boston area SDS/MSA Support Group was held on August 1 at Beth Israel Deaconess Medical Center in Boston. Tony and Marilyn Swartz Lloyd, Noreen and her mother Judy, Birmingham and Rob and Carol Langer attended, as well as Dr. Roy Freeman and Chase, Dr. Freeman's research nurse.

Pat Keck, an occupational therapist, spoke to the group about what occupational therapy is and how it can be helpful. She indicated that occupational therapy helps people function in the activities of daily life, but that it also focuses on helping people continue to participate in the activities that are important to them. For instance, if a patient really loved fishing, they would help find a way to modify the fishing rod so that it would allow the patient to continue to enjoy that activity.

Occupational therapists can also tour the home, and assist in recommending modifications to the home to make it safer and more accessible. Pat indicated that although these evaluations tend to focus on the bathroom because that is the site of many falls, that they can encompass the whole house.

Pat gave us several good resources for further assistance. She handed out a catalog from AliMed called "Help at Home" which is full of various devices to help with getting around and with functioning on a day to day basis. There is also a web site, www.alimed.com. She emphasized that before making a purchase of something like a walker or wheelchair that the person should consult with a physical or occupational therapist to be sure that the item will serve the intended purpose.

Pat also highly recommended Easter Seals and Spaulding Rehab as a good resources for all types of assistive devices. She pointed out that Easter Seals has a technology center in Worcester where patients can try various types of assistive devices (from speech enhancing devices to wheelchairs) to see which works best for them. Both have teams that will come to the house to do evaluations and Pat indicated that Easter Seals has good contacts with various agencies to provide financial assistance for assistive technology where there is financial need. For further information, the Massachusetts Easter Seals web site is www.EasterSealsMA.org and the Spaulding Rehab site is http://spauldingrehab.org/home/ambulatory/boston.htm.

There are also private agencies (mostly private-pay) that will provide home evaluations, will hire and supervise contractors, and will provide various forms of assistance around the house from driving to appointments to managing the details of moving to assisted living. One that Pat is familiar with and recommends is called "HouseWorks". They serve Boston and the North Shore -- the web site is www.house-works.com.

The next meeting of the group will be held on Thursday, October 17 at Beth Israel Deaconess Medical Center at 5 PM. We plan to show the video tapes of the About Health show with interviews of Dr. Roy Freeman, Rob and Carol Langer, and Tony Swartz-Lloyd. Also, Pam Bower will be our special guest, as she will be vacationing in the area at that time. Mark your calendars now!

P.S. I have a number of handouts from the meeting -- please let me know if you would like me to send anything to you.

Carol

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[Guest guest]

Carol,

If you have a spare copy of the About Health tape, we are having a meeting

Sunday here and could use it as a start.

Take care, Bill Werre

P.S. I agree with Pam - great write up.

Excellent summary Carol, as always! I'm really excited about attending your next local New England group meeting in October.

Hugs,

Pam

-----Original Message-----From: Carol Langer Sent: Tuesday, August 06, 2002 10:22 AMTo: shydrger list; Zola, ; son, Rick; White, Debbie; Visalli, ; Viglione, Peg; Swartz-Lloyd, Tony; Skillen, Anet; , Noreen; Silberman, Tina; Sabo, ; Rosenberg, Allan; Purcell, Pat; Pollen, Ellen; Podanoffsky, Louise; Pettengill, Jane; Peeples, Judy; Peeples, ; Pearl, Jayne; Park, Joonsuk; Mrowka, Donna; , Kathy; Martignetti, ; Markey, Diane; Markey, ; Macauley, ; LoPresti, Candy; Lockhart, Jean; Jencks, ; Humes, Janet; Foley, Tim; Fenderson, Bob & Margrette; Doneghey, Mason; Coutant, Sheila; Chris; Chase, ; Bynum, Jim & Connie; Birmingham, ; Bessette, ; Barresi, ; Baravalle, ; Anglin, Chris; Hamill; RGGiusti@...Subject: Notes from the Boston Area Support Group Meeting

A meeting of the Boston area SDS/MSA Support Group was held on August 1 at Beth Israel Deaconess Medical Center in Boston. Tony and Marilyn Swartz Lloyd, Noreen and her mother Judy, Birmingham and Rob and Carol Langer attended, as well as Dr. Roy Freeman and Chase, Dr. Freeman's research nurse.

Pat Keck, an occupational therapist, spoke to the group about what occupational therapy is and how it can be helpful. She indicated that occupational therapy helps people function in the activities of daily life, but that it also focuses on helping people continue to participate in the activities that are important to them. For instance, if a patient really loved fishing, they would help find a way to modify the fishing rod so that it would allow the patient to continue to enjoy that activity.

Occupational therapists can also tour the home, and assist in recommending modifications to the home to make it safer and more accessible. Pat indicated that although these evaluations tend to focus on the bathroom because that is the site of many falls, that they can encompass the whole house.

Pat gave us several good resources for further assistance. She handed out a catalog from AliMed called "Help at Home" which is full of various devices to help with getting around and with functioning on a day to day basis. There is also a web site, www.alimed.com. She emphasized that before making a purchase of something like a walker or wheelchair that the person should consult with a physical or occupational therapist to be sure that the item will serve the intended purpose.

Pat also highly recommended Easter Seals and Spaulding Rehab as a good resources for all types of assistive devices. She pointed out that Easter Seals has a technology center in Worcester where patients can try various types of assistive devices (from speech enhancing devices to wheelchairs) to see which works best for them. Both have teams that will come to the house to do evaluations and Pat indicated that Easter Seals has good contacts with various agencies to provide financial assistance for assistive technology where there is financial need. For further information, the Massachusetts Easter Seals web site is www.EasterSealsMA.org and the Spaulding Rehab site is http://spauldingrehab.org/home/ambulatory/boston.htm.

There are also private agencies (mostly private-pay) that will provide home evaluations, will hire and supervise contractors, and will provide various forms of assistance around the house from driving to appointments to managing the details of moving to assisted living. One that Pat is familiar with and recommends is called "HouseWorks". They serve Boston and the North Shore -- the web site is www.house-works.com.

The next meeting of the group will be held on Thursday, October 17 at Beth Israel Deaconess Medical Center at 5 PM. We plan to show the video tapes of the About Health show with interviews of Dr. Roy Freeman, Rob and Carol Langer, and Tony Swartz-Lloyd. Also, Pam Bower will be our special guest, as she will be vacationing in the area at that time. Mark your calendars now!

P.S. I have a number of handouts from the meeting -- please let me know if you would like me to send anything to you.

Carol

If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe