During my Caregivng years, there were many things I wished I could do but couldn't---you all know how that goes. Ron passed away last July. Since then I've been finding my way to my new life. With the help of family members, I'm doing one of my wishes. As long as I've been here at Alz Spouse, I've tried to keep the matter of my Disability(Charcot-Marie-Tooth) off the boards. We aren't here for that. But as a example of what's possible in a new life after Dementia, I want to share my news. Carol's Crew On May 11, 2013 my niece, Monica and my sister, Gail are running the 5/3rdRiver Bank run 25k in my honor. We will be raising funds to give back to CMTA, who has given me so much. Our goal is to raise $2000 by race day. Please consider helping us create awareness and maybe providing even a small donation to help fight this cause! Every little bit helps. Thank you :)
Aunt Carol's Story: by Erin—Monica’s sister. Our Aunt Carol was born with CMT, CMT affects the nerves that control the muscles. It is the most commonly inherited peripheral neuropathy, or nerve damage, and affects approximately 2.6 million people. In the 1990’s my Aunt learned of the CMTA and was seen at their Clinic at Wayne State University. The Clinic arranged for testing to determine her specific type of CMT. Testing then was just getting started, so the tests didn’t recognize her type of CMT. They then arranged for specimens to be sent to Baylor University Research Labs. Shortly after, they found her genetic error. The Clinic further arranged for the research center to match samples from our family members to her. What they found is that none of our family members were a match – in other words no one else in the family has CMT, and therefore no one can pass it on. The peace of mind this provided my Aunt is worth its weight in gold, and alone is reason enough for her to want to help the CMTA in their fight. However, it’s much more than that! The help they have provided her beyond testing and peace of mind is immeasurable and something for which she is extremely grateful. They provide support groups, advice, and medication awareness for her and her fellow “CMTer’s” as she calls them. One of the most memorable moments I have had with my Aunt is when she came to Chicago to receive a scooter that the CMTA provided her. As a result of receiving her scooter she has been able to maintain her independence – we don’t realize how valuable that is until something threatens to take it away. My Aunt has been a proud Mom and Wife, and tirelessly cared for her husband through metal illness and Vascular Dementia for the last 20+ years until she recently lost him to a much better place. During that time she didn’t have time to focus on some of her personal interests – one of which is giving back to the CMTA and helping them drive to find treatments for CMT. The good news is that they are getting close!
Below is the link to our Donation page. http://www.cmtausa.org/index.php?option=com_jdonation&view=donation&campaign_id=85
For more info on the CMTA google cmtausa.org Thank you. Carosi2*
Carosi2*, I saw this on facebook, kudos to you!! I hope you reach your goal. Please though never feel you can't share your personal issues here, that IS what we are here for. It isn't "just" Alzheimer's, we are family and we care((hugs))
Carosi2* you are truly my hero. You never complain, never mention your disability and have been a courageous and wonderful caregiver for many years. I too have a progressive debilating disease (not as severe as yours) and as I enter my 5th full year of caregiving for a dementia spouse I am not sure how I will be able to continue both physically and financially.
I will check out the website and once again you don't know how many lives you've touched with your many years of caregiving and your wisdom. We are all blessed to have you contribute on his forum and help all of us dealing with dementia spouses and that you continue to help guide us even though your dementia journey has ended. We are blessed to have you. Much love.
UPDATE AND NEWS! We are working hard in preparation for the 25K riverbank run on the 11th. My sister Gail and niece Monica are running the 25K and I will be doing the 5K community walk in my power chair. Just wanted to update you on our progress – please if you can to pass the word. Thank you.
Have a wonderful ride Carosi2*. I did not know about this disease, I remember reading your notes that you had disabilities though. You truly are amazing. My hope is that you will raise double your amount! Thank you for the link on Charcot-Marie-Tooth disease.
It’s Monday and Saturday is the riverbank run. My sister Gail is flying in from Houston Thursday. My sister Patti, mom to Erin and Monica, arranged for our headbands and with my sister Sara, made the badges that will be pinned to them. And all this is just because I asked if my nieces would help me do a fundraiser for CMTA. The weather is supposed to start in the mid-40s and rise into the mid-60s with sunshine. It will be a good day to run and walk for those who can’t because of CMT. I’m very grateful to the donors who already put us at $766. When asked what goal we wanted to shoot for I suggested $2000. We’ve got a ways to go. Many of you have seen my previous posts. Maybe you planned to come back to them later to make a donation… and forgot. Maybe you’re just thinking about it. If you want to know more about the CMTA check out their site at cmtausa.org. Now is the time to raise our total. I will be posting our results later Saturday afternoon. It’s going to be a good day! Help us make it a TERRIFIC day!!! Thank you.
Link to our donaton page. http://www.cmtausa.org/index.php?option=com_jdonation&view=donation&campaign_id=85
Tomorrow is the Riverbank Run! We are as ready as we can be. Originally we decided to shoot for a goal of $2000 for the CMTA. This morning we broke $1000. There’s still time for those who want to help. Tomorrow, Gail and Monica will run 25K-- that’s 15 ½ miles. While they are doing that I will be power chairing my way through the 5K walk (3.1 miles). Later in the day, I will post our results. There will be pictures too, probably on Facebook. This is the first time I’ve ever attempted anything of this magnitude. Please consider being a part of this effort to facilitate the research in finding treatments for CMT and providing support to those who are living with it. If you’ve already donated, thank you very much. If you’re still planning to donate, now is a good time.
Thank you for your patience and support. Results tomorrow! The link is below.