Perhaps a note from her doctor about her specific symptoms and behaviors. I agree, many get labeled as a problem, or expensive care because of the HD diagnosis. SNFs will see them as not rehab candidate, or long tem dependent care. All medications come with some level of possible side effects. Can you discuss with her neurologist if there is another medicine to control her chorea/behaviorby patty c - Huntington's Disease Support Center
Glad to hear. Feel better Dusty! Pattyby patty c - Huntington's Disease Support Center
Hi Tall boy. That is a promising study which is currently in Phase 1 clinical trials, meaning it is currently being tested on 36 patients with early stage symptomatic HD to test for safety and drug tolerance. (in Munich, London and Vancouver) Each stage of the clinical trail process brings us one step closer. This treatment aims to turn off the gene producing mutant huntingtin protein, with hby patty c - Huntington's Disease Support Center
Smoothies!!!! You can hide all sorts of protein in there. 1 c milk 1 c greek yogurt 1 package carnation instant breakfast 1 banana 1/2 can fruit of choice Blend with ice. I would make this up around 10am for a mid morning snack, put it in a tumbler with a straw, and he would sip on it all morning. Hope this helps. PattyCby patty c - Huntington's Disease Support Center
Hi All. It has been quite a while since I have posted. I suppose I took a break to regroup my life and find my focus again. I lost my husband to Huntington's a year and a half ago (June '15) We had him at home until the end, and I loved being able to care for him according to his wishes. We did have the help of hospice services a few days a week and my family was a great support. Sinceby patty c - Huntington's Disease Support Center
I second Will's suggestion of having your daughter get in touch with the HDYO folks. They are a great resource for kids and youth affected by HD. Another group I would steer her toward is the National Youth Alliance with the HDSA. This is a member-led subsection of the HDSA. The leaders have recently done education days in 3 locations around the states and my kids and I attended. It was woby patty c - Huntington's Disease Support Center
Swallowing difficulties is what ultimately led to my husband getting pneumonia and being hospitalized earlier this year. Though you could play arounf with food consistencies yourself, the best way to find out what is safe and what is not is to have a Modified Barium Swallow. This is done with a speech therapist in the xray department where they treat the food with barium (so it will show up onby patty c - Huntington's Disease Support Center
We did the same Marsha. When my husband was hospitalized in January with pneumonia, he failed his swallowing test. It was such a sudden change. The infection and lack of nutrition for 5 days had likely left him encephalopathic, which in people with HD, leads to more difficulty controlling voluntary movements. He had lost 30 pounds in the month leading up to this. We decided to put the feedinby patty c - Huntington's Disease Support Center
I would bring your concerns to Marsha or Steve privately. They would have contact info for everyone, as administrators.by patty c - Huntington's Disease Support Center
The only thing I would add though is that often dysphagia, or difficulty swallowing is more of a hallmark of late stages, not often an early symptom. I snark my water sometimes too. The others do sound very similar to my husband's onset of symptoms. Good luck, Pattyby patty c - Huntington's Disease Support Center
Yes. I was there. I ran past will and introduced myself but then needed to run along. Sorry I missed you later. This was the first year we traveled to the convention as a family. The kids enjoyed the NYA events and have forged the beginning of some solid friendships. Rusty and I met others from around the states and also made stronger our friendships with other Pittsburgh peeps who madeby patty c - Huntington's Disease Support Center
I have a degree and 20 years of experience as an occupational therapist. Unfortunately, I can't do that from home. I am completing an online course for Medical Transcription and Editing. Many MTEs work from home, either in employee status or independent contractor. It is interesting, keeps my mind stimulated, and actually is teaching me more about other medical specialties than I already hadby patty c - Huntington's Disease Support Center
I'm sorry you are hurting. There are many good people here as well. I don't know exactly what to say but I didn't want to let your post go without response at all.by patty c - Huntington's Disease Support Center
When the license runs out (for lack of a better word) , will some other company automatically start to produce it generically, or is there a chance it will still only be available through Accredo? Yes, it will be interesting. While I do think the price is way out of line, I do appreciate how much Lundbeck has funneled back into the HD community. HDSA is strongly supported by Lundbeck. Mby patty c - Huntington's Disease Support Center
I am fortunate to have a background in working with people with brain injury. The staff went through a program called Non-violent Crisis Intervention. I still to this day remember and use some of those techniques. Basically, you as caregiver need to accept that this is no longer a level playing field. He will not consistently respond and reply in a fair or logical or reasonable manner. Yby patty c - Huntington's Disease Support Center
Perhaps the times when he is loving and appreciative are the times when you can talk to him about those more difficult times. I have often told my husband that there were times he was very difficult to live with and for my safety and the kids safety, we did have him removed from the home for a while. Sadly, the insight just naturally isn't there, or as easily accessible as it is in a helathy peby patty c - Huntington's Disease Support Center
There are many forms of dystonia that can also lead to the physical symptoms you are describing. Fortunately, they are not nearly as devastating as HD can be. If there is no family history of HD, I doubt that is it. The only person who could tell you for sure is a neurologist experienced in movement disorders and genetic testing. He has to be ready and willing for that . Good luck. Pattyby patty c - Huntington's Disease Support Center
Hi Jillian. So sorry you are feeling alone. What area of the country are you in. If you have a local HDSA chapter, you might be able to get the social workers to advocate for you and get an SSDI application for you. Someone needs to talk to your employer and explain the situation. You would think they would be compassionate of your situation given the business they are in. Do you haveby patty c - Huntington's Disease Support Center
You can only honestly complete the application forms before you have concrete knowledge of your husband's gene status. The GINA act (Genetic Information Nondiscrimination Act) should protect against family "risk" Unless it specifically asks about family history of Huntington's, you are not required to elaborate. Once he is gene tested, and if he does come back positive, he would noby patty c - Huntington's Disease Support Center
Yes, Will. We actually do take the generic. (rather he does.) RisperiDONE is generic for Risperidol. He has all generics at this point, other than the Xenazine. That one is wicked expensive. If it wasn't for charity assistance, we could never afford the copay.by patty c - Huntington's Disease Support Center
I think it is okay to educate yourself and get an idea of what may be in store. With any luck, he will have a later than expected onset, and you will have many many healthy years together. If I were in your place, I would let him drive that boat for now. Enjoy your budding relationship and live life to the fullest. Read up on some of the healthy lifestyle habits that can ease symptom onset (tby patty c - Huntington's Disease Support Center
Ha ha Will. Far better than my Croatian as well!!by patty c - Huntington's Disease Support Center
Hi Kirsten. My first question for you is to ask if your boyfriend is already symptomatic and diagnosed with HD, or is he gene-positive, or at risk. Each of these have monumentally different meanings as far as time you will have together and what that time will be like. I hope that you have your boyfriend's support in seeking others' input regarding HD. He may have difficulty talking abby patty c - Huntington's Disease Support Center
The CAG count can be a guideline to provide an average age of onset (range of ages.) Onset may also depend on other factors. Your father's history of alcohol use and war stressors might hasten his onset. Every person is different. My husband has CAG 43 repeats. His symptoms started around 36-38. At 46, he is in mid-late stages. Your dad has a higher CAG and is older, see how there are variby patty c - Huntington's Disease Support Center
Welcome Adam. You are already blessed with some great insight into the challenges of living in a family with HD. Your wife and mother-in-law are very lucky to have you in their lives. Never feel pressure from anyone to have your wife test or not test. That is a purely personal choice for the person at risk. Live your lives fully and make healthy choices.by patty c - Huntington's Disease Support Center
Yes, Lisa. I am familiar with that product as well. It is called magic cup. I would imagine ist is the same formulation like a Boost or Ensure, but thickened so it will melt to a thickened liquid. It can be expensive if used frequently, so for us this was a more economic solution. I have also started to grind his meats after cooking and blending with egg, bread crumbs. Mold into a pattiby patty c - Huntington's Disease Support Center
Welcome. I am sorry you are in this situation. We all have felt the fears you are feeling. You are not alone. Your decision to care for your father will be a difficult one. You need to consider how it will affect you, your marriage and your child. I do not know how HD is treated in Croatia. In USA we have medications that are helping greatly with aggressions, mood swings, and movementsby patty c - Huntington's Disease Support Center
Beautiful news! Congratulations!by patty c - Huntington's Disease Support Center
If she is still incarcerated, do what you can to keep her incarcerated. Does your state have a state mental health facility? Perhaps she can go straight from jail to be 302'd to a mental health facility. Even if she is not diagnosed, she is making poor decisions whether sober or not, and is a danger to herself and possibly others. She cannot be forced into testing, but if you can somehow makeby patty c - Huntington's Disease Support Center
Well, maybe a small success. In the HD world, we celebrate each tiny success. We had my husband to the hospital again last week for an aspiration pneumonia. That is twice in 4 months. He was already on nectar thick liquids and mechanical soft foods. Admittedly, when you are at home and he looks strong, you think you can try things out..ease up on the restrictions. After all, he has alreadby patty c - Huntington's Disease Support Center