Neuromyelitis Optica: The Learning Center: zenred's blog

hey there! I live just north of Denver in Broomfield and am up for lunch or if you need to talk! You have found a great family here! I have lots of great resources around the area so if you need any help finding doctors, physical therapist, acupuncture, energy balancing , I have a great network and will help if I can ! :)

Rachel

303 204 9638

From: Erin Miller <eamiller81@gmail.com>
To: "devics-spectrum@guthyjacksonfoundation.org"
<devics-spectrum@guthyjacksonfoundation.org>
Sent: Mon, June 6, 2011 2:48:10 PM
Subject: Re: [Devics-spectrum] Hello All!

Hi Paige,

My name is Erin I live in Colorado up in Frisco, but I do come to Denver very frequent. I have been diagnosed since 2009, also help out with Grace with the support group. I would love to chat with you feel free to call me any time below is my cell number. How long have you been diagnosed?

720-641-6669

Erin
Sent from my iPad

On Jun 6, 2011, at 2:19 PM, bellpe@mac.com wrote:

> Hey there!!! Just reaching out to anyone who might be in Colorado/ Denver Metro area??
>
> Happy Monday Everyone,
> Paige
>
> _______________________________________________
> Spectrum is the new home of Devic's Support
>
> View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/
>
> To
change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings
>
> Read Frequently Asked Questions: http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/
>
> Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org

_______________________________________________
Spectrum is the new home of Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum
options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

Read Frequently Asked Questions: http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/

Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org

Re: [Devics-spectrum] Tired because of NMO or not sleeping

zenred

June 7, 2011 by zenred Comments (0)

I think energy work can be very helpful in lifting this too :)

From: Julie Schultz <julie.schultz76@gmail.com>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Tue, June 7, 2011 11:46:15 AM
Subject: Re: [Devics-spectrum] Tired because of NMO or not sleeping

I would say it really could be either. I've had both. I'm only 20 mg of prednisone each day right now and I have energy because of that, but without it, I'm pretty sleepy too.

If she feels depressed, I would suggest going to a psychologist or psychiatrist who can help her.

Julie

On Tue, Jun 7, 2011 at 11:19 AM, <bob.maroney@sbcglobal.net> wrote:

My wife, Carolyn has had Devics (NMO) since 1995. She has had many relapses, however, the latest (April 2011) has been the worse. She is not getting much better as far as walking and is now very tired all the time. My question is, is this from the disease or the depression she is feeling because she is not bouncing back as she has in the past. During her last episode before this one, she lost the vision in her left eye also.

_______________________________________________
Spectrum is the new home of Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

Read Frequently Asked Questions: http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/

Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org

Re: [Devics-spectrum] NEW TO NMO

zenred

April 22, 2011 by zenred Comments (0)

Hi Bill. You are in the right place and have tons of support. For neuropathic pain I take a combination of neuropathic drugs including 600 mg lyrica, 120 cymbalta and 50 of amitriptyline. I also use colozapam as needed for extreme spasms or muscle pain. I used to take a larger array of drugs (oxycontin, bachlophen, Valium, ect..) but after a several month trial and error period under strict doctor supervision, I found what was right for me and allowed me to live with the pain.

style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; ">

As a little background, I was diagnosed in feb of 2009 after six months in and out of the hospital (12 weeks all together) due to six attacks of transverse myelitis. It started in my cervical spine and with every attack would move down the cord. I was left with a lesion that spanned from c2 all the way to t12. After about 50,000 mg of solumendrol and two rounds of plasmapheresis, I was put on rituxin. Once that was stable, I then had to to relearn to write, to walk and realized quickly that I was going to have to create a whole new lifestyle to have a chance at really
being able to live and not just survive with this disease. I am blessed that the rituxin has kept me in remission and am lucky to have a guardian angle that has looked over me during recovery because my spine has regenerated amazingly and the only active lesion I showed as of last month is at T8. I thank my lucky starts every day for the chance I have been given.

In addition to western medicine and medication, I have found that diet makes a huge difference in my level of pain and spasms. I stay away from the night shade foods. These include potatoes, tomatoes, peppers, eggplant and tobacco. This group of foods are naturally inflammatory in the body and can exacerbate an already inflammatory condition. I found that for me potatoes are the worst. I
also smoke and need to quit and just have not been able to tackle that just yet, but I found a huge relief in limiting foods that are inflammatory. I have also stopped eating processed foods. I found that they make my fatigue very severe.

I also know how important physical therapy and exercise are to recovering from and living with NMO. I have worked diligently with a great physical therapist to get my muscles to work correctly again. Basically when you have a lesion in the spine, the nerves can no longer send signals correctly, which is why we experience the spasms, pins/needles and pain. For me, I had to reteach all those muscles. It was really hard and gave a whole new meaning to no pain no gain. Its a delicate balance between pushing yourself hard
enough and then again not too hard or the pain was unbearable. I can say with complete conviction that this work played a huge part in my condition now! I am actually able to water ski , snow ski and ice skate again. I also started ballroom dance lessons recently. It did not come back easy but it came back.

Acupuncture has also been an amazing tool during my recovery and now life. You must be sure to find someone accredited, but once you do, the relief speaks for itself. For me, I believe this will be something I will incorporate throughout life as a means to keep balances. More recently iI have started meditation. Through practice, I have found that I can
separate myself form the physical pain. I also meditate to help align all the energy centers in my body.

I am an inquisitive and open minded individual and I continue to look for and seek new methods to help me find and maintain an over all wellness that flows through my mind, body and spirit. You will find that stress management is key to living with and managing NMO. I know it seems hard and SO SCARY at first, but please know that there is hope and huge scientific strides every day. I am actually currently using all methods I listed above in hopes that I will be able to live without the daily neuropathic medications. I have decreased my cymbalta in half in the past couple weeks and its going really well. I am very encouraged!

style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; ">

The next few sentences are littel things that I try to remember as i regain control of my life:

1. remember to celebrate little victories! No matter how small. It will help you feel the hope!

2. try not to get stuck in being what you were "before" and realize that life is always changing and you will never be exactly as you were in one moment in time.

3. Create a support system. When you are afraid and down, come here and get information and support. Its very intense and we
all need to vent! Make sure you have a a positive voice in place to help you through.

2. Dont be embarrassed about having to do things differently than before. Know that you deserve to find as much comfort as possible in any situation. For example I cant control me heat any longer. For the longest time I tried to use programs or pices of paper to fan myself. Then one day I asked myself why I was so emabarrassed of this fact? From that day forward I started to carry a beautiful bright yello fan from Italy to carry with me! Now if I am hot I pull out my beautiful fan and proudly cool myslf.

4. Listen to your body!!!!!!!!!!!

I am so sorry that you have to live with this disease. It is hard but there is HOPE!!!!!! ALWAYS HOPE!!!

Healing and kind thoughts to you.

Rachel Tracy Sheaffer

Rachel Tracy Sheaffer From: "gracepdm@atlanticbb.net" <gracepdm@atlanticbb.net>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Fri, April 22, 2011 11:24:19 AM
Subject: Re: [Devics-spectrum] NEW TO NMO

Hi Bill,
I have paroxysmal tonic spasms which unfortunately never resolved. They're controlled with 3000 mgs of Keppra (anticonvulsant) per day. It's best to consult with your neurologist in order for him to identify the type of spasms and pain that you are experiencing, as different types of pain respond to different classes of medications.
Good luck.
Grace

[Devics-spectrum] Invitation to connect on LinkedIn

zenred

April 22, 2011 by zenred Comments (0)

I'd like to add you to my professional network on LinkedIn.

- Rachel

Rachel Rachel Tracy (Shaeffer)

Independent Public Relations and Communications Professional

Greater Denver Area

Confirm that you know Rachel

Re: [Devics-spectrum] Support

zenred

April 6, 2011 by zenred Comments (0)

Please count me in Dan! A support network like this is really amazing. Thank you for all you do!

From: "smikalian@comcast.net" <smikalian@comcast.net>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Tue, April 5, 2011 6:22:35 PM
Subject: Re: [Devics-spectrum] Support

Dan,

I am in Indiana and see doctors in Chicago, IL. Not sure where in IL your person is located, but it may be nice to talk to someone close. My phone number is 574-273-0744. You can pass my number on or contact me with her information. I have had ON six times and have a blind spot in one eye. I can totally relate to any eye issues!

Thanks,

Sue Mikalian

----- Original Message -----
From: dbehne@allggf.org
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Tuesday, April 5, 2011 7:50:21 PM
Subject: [Devics-spectrum] Support

Hello to all,

We received a call from a nice woman today who is experiencing vision problems and cannot join spectrum. She will like to talk with someone within the NMO community and asked about a support group. Her area code is 618 (Illinois I believe). If someone will like to talk with her, I will contact her and ask her if it is ok to share her contact information with you.

This is a great opportunity for me to talk about my plans for the support network. This is not to be confused with the wonderful support network that Tim and Gracie started online with Devic’s Support. I will like to start a map, similar to “Connect the Docs” that will include volunteers throughout the country. Everyone on the
map will need to volunteer their time and be willing to list their name, phone # and e-mail on the map. This is similar to what Sandy Siegel is doing at the TMA. These people can work with others in the area (NMO supporters, TMA, MSS) to start fundraisers, run/walk events, etc. The events and time allocation will be solely up to you. Caregiver’s are more than welcome to help as well. The Foundation will send these people a small box of GJCF and NMO items to hand out. We can even create a couple of banners that can be passed around from event to event throughout the country.

Please contact me if you will like to participate. As mentioned in our post yesterday, “Ten people who speak make more noise than ten thousand who are silent.” -Napoleon Bonaparte.

This is a large undertaking, so please bear with us while we get it started and implemented.

All the
Best,

Dan

_______________________________________________
Spectrum is the new home of Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

Read Frequently Asked Questions: http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/

Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org

Re: [Devics-spectrum] Newly diagnosed in Colorado.

zenred

April 4, 2011 by zenred Comments (1)

Hey Grace,

I was talking with my mom and we were thinking that they just might need food or an essentials kit dropped by or someone to just be there to help.. I remember when I was there and it was so hard. My mom is also happy to reach out in anyway that she can. It feels so dark and scary and a light or helping hand can make all the difference in the world. For me finding the Guthy Jackson Charitable Foundation at the 2009 patient day was my light, (which was
maybe a third of the size as it was this past year so the tree is ever expanding and that is really wonderful. For almost an entire year I felt like I was living in an abyss of unaswered questions and wonder, with no clues on which ay was up. I think it would have been really helpful both for me and my family had there been another family in the area who reached out and extended us the proverbial hand up. :) Too bad we dont have their contact info.

Rachel

From: "gracepdm@atlanticbb.net" <gracepdm@atlanticbb.net>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Sat, April 2, 2011 11:57:06 AM
Subject: Re: [Devics-spectrum] Newly diagnosed in Colorado.

Rachel,

No, as yet we have not heard from her again. That being said, her sister is extremely ill and I am sure that her family would let us know, if and when, they wanted to make contact.

Gracie

Re: [Devics-spectrum] acupuncture

zenred

April 2, 2011 by zenred Comments (0)

I dont think so. When we were discussing alternative therapies I had also mentioned chiropractics. This is when he strongly reccomended that no brain stem adjustments be practiced. I have used the meridians and fields around that area for some time in acupuncture with great success. After my mugging on the 17th, he actually is the one who helped me get my symptoms under control again. Since the attackers got me on my right side which is the side where I expereince the most nerve symptoms. I was really really swollen and he really helped so much. I think I still would be crying in agony if not for his treatment!

size="2" face="Tahoma">

From: Burton Silver <prinx05@mac.com>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Wed, March 30, 2011 6:08:34 PM
Subject: Re: [Devics-spectrum] acupuncture

Hi Rachel

I never had Accupuncture or pressure.

Does Dr. Greenberg mean to stay away from meridians or accupuncture fields that represent the brain stem. Excuse my ignorance.

Burt

On Mar 30, 2011, at 6:02 PM, Rachel Tracy wrote:

Acupunncture and pressure has worked wonderfully for me during my recovery and I am a big proponent of it! Dr
Greenberg told me to stay away fromt he brain stem when we discussed it, although I cant rememeber the reason.

From: Becky <Smithbeckyann@aol.com>
To: Devic's Support < href="mailto:devics-support@googlegroups.com">devics-support@googlegroups.com>
Sent: Tue, March 29, 2011 4:23:13 PM
Subject: Re: [Devics-spectrum] acupuncture

I don't go for accupunture, my neighbor is licsesned for both pt and
accupressure, and it does help with the stress ussually, which is one
of my major causes of flares, the funny thing with accupressure it
mainly is working on the feet, as I have no feeling in my arms and
legs (which include of course my feet) I did not think it would work.
it does however relax and relieve some of my pain. ( level 7-8 down to
3-4). So I feel it is well worth making her a meal the following
night!

Have a Sparking Daaaay!!!!!

-- class="Apple-converted-space">
You received this message because you are subscribed to the Google Groups "Devic's Support" group.
To post to this group, send email to devics-support@googlegroups.com.
To unsubscribe from this group, send email to devics-support+unsubscribe@googlegroups.com.
For more options, visit this group at http://groups.google.com/group/devics-support?hl=en.

_______________________________________________
Spectrum is the new home of
Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

Read Frequently Asked Questions: http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/

Questions about this email list can be sent to ymailto="mailto:spectrum@guthyjacksonfoundation.org" target="_blank" href="mailto:spectrum@guthyjacksonfoundation.org">spectrum@guthyjacksonfoundation.org

_______________________________________________
Spectrum is the new home of Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

Read Frequently Asked Questions: class="Apple-converted-space"> http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/

Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org

[Devics-spectrum] Newly diagnosed in Colorado.

zenred

April 2, 2011 by zenred Comments (1)

Hello. Has anyone heard from the lady in ok whose sister is here in Colorado and newly diagnosed?? I would really like to reach out to this family if they are close to me here in Colorado. Grace any news from her??

Rachel T

Re: [Devics-spectrum] acupuncture

zenred

March 30, 2011 by zenred Comments (0)

Acupunncture and pressure has worked wonderfully for me during my recovery and I am a big proponent of it! Dr Greenberg told me to stay away fromt he brain stem when we discussed it, although I cant rememeber the reason.

From: Becky <Smithbeckyann@aol.com>
To: Devic's Support <devics-support@googlegroups.com>
Sent: Tue, March 29, 2011 4:23:13 PM
Subject: Re: [Devics-spectrum]
acupuncture

I don't go for accupunture, my neighbor is licsesned for both pt and
accupressure, and it does help with the stress ussually, which is one
of my major causes of flares, the funny thing with accupressure it
mainly is working on the feet, as I have no feeling in my arms and
legs (which include of course my feet) I did not think it would work.
it does however relax and relieve some of my pain. ( level 7-8 down to
3-4). So I feel it is well worth making her a meal the following
night!

Have a Sparking Daaaay!!!!!

--
You received this message because you are subscribed to the Google Groups "Devic's Support" group.
To post to this group, send email to devics-support@googlegroups.com.
To unsubscribe from this group, send email to devics-support+ href="mailto:unsubscribe@googlegroups.com">unsubscribe@googlegroups.com.
For more options, visit this group at http://groups.google.com/group/devics-support?hl=en.

_______________________________________________
Spectrum is the new home of Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

Read Frequently Asked Questions: href="http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/">http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/

Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org

Re: [Devics-spectrum] New Footage on NMO Diaries

zenred

March 28, 2011 by zenred Comments (0)

I want to free fall form a plane! :) Did once but have not since NMO! Ladies, what do you say?? Should we go sky diving?? :) ;)

Erin, it was really great talking with you this morning! I have missed you lots and I am so so so glad that we talked!! :) I think what you ladies are sharing is really wonderful! :) I am going to go watch now! I hope this inspires everyone to share their journey! :) I am going to put a couple things on you tube I think... I have a video of me skating over christmas that I think would be really fun to share!

With much love,

rachel

From: "gracepdm@atlanticbb.net" <gracepdm@atlanticbb.net>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Mon, March 28, 2011 2:53:13 PM
Subject: Re: [Devics-spectrum] New Footage on NMO Diaries

Going over to check it out now! You Gals scared me to death with your skiing adventure. Please tell me that the three of you are not free falling out of planes. ;-)

_______________________________________________
Spectrum is the new home of Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

Read Frequently Asked Questions: http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/

Questions about this email list
can be sent to spectrum@guthyjacksonfoundation.org

1 2 3 Next »

Please login to use our advanced features

zenred

zenred

zenred

zenred

zenred

LinkedIn

zenred

zenred

zenred

zenred

zenred

zenred