tag:blogger.com,1999:blog-10081281.post6410609828302157971..comments2024-03-10T11:27:23.742-07:00Comments on At Risk for Huntington's Disease: The shadow careerGene Veritashttp://www.blogger.com/profile/10911736205741688185noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-10081281.post-43129312468078934752011-04-25T10:34:15.061-07:002011-04-25T10:34:15.061-07:00Hi Gene,
I take heart from your blog! I was CMO...Hi Gene, <br /><br />I take heart from your blog! I was CMO at CHDI since July 2007 but retired a few months ago. <br /><br />Your comments to the young woman and her boyfriend at risk about being open and straight forward were right on. In my experience lack of openness is not a sign of sensitivity. I have heard too many patients say I wish I had known earlier so I would have understood that my father, mother, grandparent’s behavior was not my fault or that they were not nasty people, but were suffering from HD. Or that I could have done something so my kids would not have to go through the same. I was early in my career a family therapist. Family secrets can be very destructive to relationships. The loneliness, the fear and the struggle with the at-risk-status can be dealt with as you well know. People should know that they are not alone. But there is so much misunderstanding about what it means in and outside the HD community, including physicians. However, testing remains a very personal decision, that outsiders not always appreciate. When clinicians or genetic counselors promote their opinions, rather than helping people to make the right decision for them, I think we lose our supportive role. I very much like your approach in your blog. From the literature it is clear that not all people who test negative live happily ever after, while others who test positive turn this specter into something positive and show great resilience. Including participation in research as a way of working towards a better tomorrow. Knowing that you could find out what was ahead for your child allowed you to make the right decision.<br /><br />I wish you all strength in your efforts to break the silence.<br /><br />Warm regards, <br /><br />DanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-48162189346517050202011-04-19T03:26:38.195-07:002011-04-19T03:26:38.195-07:00Now is the Time tax payers :O}
They need our Help....Now is the Time tax payers :O}<br />They need our Help.Mike Anthonyhttps://www.blogger.com/profile/16108777306008797477noreply@blogger.comtag:blogger.com,1999:blog-10081281.post-12512826461157231012011-04-19T02:13:02.702-07:002011-04-19T02:13:02.702-07:00Dear Friends
Do you know anything about entitlem...Dear Friends<br /> <br />Do you know anything about entitlements and who those entitlements belong to ? Do they belong to the state ? do they belong to DHHS, do they belong to Elder indapendance of maine? do they belong to Home care agencies? or do they belong to the sick and severely disabled families ? Millions of Tax $$ go though all these people and only about 10% goes to the disabled families. <br /> <br />Do you think Maine Tax Payers need to know where their Tax $ are being wasted?<br /> <br /> <br /> <br />Support Letter from Hospice for them:<br /> <br /> <br /> <br />Office of the Governor<br /> <br />#1 State House Station<br /> <br />Augusta,<br /> Maine 04333-0001<br /> <br />April 8, 2011<br /> <br />Dear Governor LePage:<br /> <br />This letter is in support of Raima and Mike Fermald’s<br />request for consideration to increase funding for the care that they provide in<br />their home for their sons, John and Christopher Irving, as well as other<br />families caring for family members with significant disabilities or medical<br />conditions.<br /> <br />I first met these men (John is 38<br />years of age, and Chris is 36 years of age) when John was admitted to hospice<br />services in late January of this year. At the time, due to the demanding care<br />needs of Huntington’s Disease, they were both living in a group home with the<br />support of Lutheran Social Services. While each of the staff members I had the<br />opportunity to meet was pleasant and helpful, the “home” had more of a “Frat<br />House” feeling than a home.<br /> <br />Most concerning to me during those<br />visits was John’s privacy and dignity as he embarked on this journey toward the<br />end of life. John’s hospital bed was in the living room, and during those<br />visits he was clothed only in a t-shirt and adult diaper. Meanwhile, the staff,<br />college aged men and women, went about their routine of preparing meals, keeping<br />house, watching TV, and listening to music. If John had personal care needs,<br />they were attended to for any and all to witness. Since John and Chris’ ability<br />to clearly communicate their needs and preferences is severely limited, I am<br />not sure the staff at the group home ever considered that this might be<br />uncomfortable for either or both.<br /> <br />John and Chris moved into their<br />parents’ home at the end of February, and Raima and Mike have been providing<br />around the clock care with limited support of MAS Home Health services, and our<br />agency. They have done a fabulous job, and this is evident from the look of comfort<br />and calm that John and Chris now wear. No one can care for a loved one like the<br />family who loves them. However, caring for one family member on hospice is<br />taxing enough, but caring for two grown men with such significant needs for<br />assistance for their every activity is unfathomable to me. Additionally, Chris<br />was also admitted to hospice at the beginning of April. I can see the toll this<br />is taking on Raima though she does this all willingly and lovingly─ what mother<br />would not if given appropriate support?<br /> <br />I urge you to listen carefully to<br />what the Fernalds have to say. They are the “experts” when it comes to<br />providing cost effective, compassionate home based care for a family member<br />whose needs are so great. <br /> <br />Respectfully,<br /> <br />Wendy Weise, MS/LMSW-cc<br /> <br />Social WorkerMike Anthonyhttps://www.blogger.com/profile/16108777306008797477noreply@blogger.com