What is Huntingtons Disease
Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of va...
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DEALING WITH PARENTS AND BROTHER OF ILL SPOUSE
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MY FINACEE IS STARTING TO SHOW THE SIGNS OF HUNTINGTONS AND WE ARE NOW IN THE PROCESS OF TESTING HAD BLODD WORK DONE LAST WEEK AND MRI EEG THIS WEEKEND, SO THREE MORE WEEKS UNTIL DOCTORS VIST TO CONFRIM. HER (ADOPTED)PARENTS ARE IN ANOTHER STATE AND HER BROTHER STILL ANOTHER THEY ARE NOT HER WITH NOW EVERY DAY AS I AM SEEING THE PAIN SHE IS IN, THE FATIGUE, THE IMBALANCE, THE PROBLEM SLOVING , DROPPING THINGS, CONFUSED, GETTING LOST DRIVING,PROBLEMS SWALLOWING, UNABLE TO STUDY TO KEEP UP HER CNA LICNESE. THERE IS SO MANY EARLY SIGNS THAT HER FAMILY IGNORED, FACIAL TICKS GRIMSING, JERKING BODY MOVMENTS, MOOD CHANGES, WEIGHT LOSS. NOW WHEN I TRY TO HAVE THEM CALL HER AND CHEER HER UP BECAUSE I KNOW SHE IS LONELY AND WORRIED WHILE I AM AT WORK, THEY TELL HER I AM JUST NEGITIVE AND TO PUT FATIH IN CHRIST FOR HEALING AND GET UP AND GO TO A JOB THATS 12 HRS A DAY OF LIFTING INVALID PEOPLE, GIVE BATHS AND WIPING BOTTOMS OF THE PATIENTS. WHEN NONE OF THEM WORK A 12 HR DAY! NOT ONCE DID THEY EVER LOOK UP HUNTINGTONS TO FIND OUT ANYTHING ABOUT EARLY WARNINGS(HEAD IN THE SAND) I HAVE JUST STARTED TO COME TO REASEARCH IN PAST 4 WEEKS SO I CAN HELP FIGHT THIS IN A POSTIVE WAY. HER FAMILY STILL HAS ONLY READ LIGHTLY WHAT I HAVE PULLED OFF THE NET AND SHOWED THEM. AND I AM THE ONE THAT IS PUTTING THE DOUBT IN HER MIND AND THAT IS WHY SHE IS HAVING TROUBLE. HOW DO I ENCOURAGE MY FINACEE, AND NOT OFFEND HER FAMILY? HOW DO I GET THEM TO PULL THEIR HEAD OU OF THE SAND? THREE MORE WEEKS UNTIL RESULTS BUT WE WOULD NOT EVEN SEEN THE DOCTOR UNTIL 10 MORE DAYS FROM NOW IF I HAD NOT PUSHED TO GET IN AT THE FIRST OPENING FROM A CANCELATION. I FEEL THE SOONER WE CAN GET ANSEWRS THE MORE WE CAN ATTACK AND FIGHT BACK AND GET THE TREATMENT NEEDED, KNOWLEDGE IS POWER! BUT HOW CAN I GET MY FUTURE INLAWS TO UNDERSTAND THAT I WANT ONLY THE BEST FOR MY SPOUSE? AND I HAVE A DEEP FAITH IN CHRIST AND ALL HIS POWER, AND I KNOW HE GAVE US WISDOM TO FIGHT OUR BATTLES IN ALL REALMS: MENTALY, PHYSICALY, MEDICALY, AS WELL AS SPRITUALY.
Posted on 07/29/09, 11:07 am |
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I totally agree! I'm sort of in the same situation, hubby's family is in denial,just lost father-in-law with Huntington's,low cag #. Very worried about hubby,daughter, and father in law had lot's of family with HD, but we are just now finding out about it. They did know what it was back then, but more family members are becoming aware it runs in the family
and what it is. My daughter has become a completely different person, she is only 23 although it could be just her age, at least that is what people are telling me. I raised and know her better than anyone else. I know her. This is not her! Hubby showing some signs but mother-in-law and sister-in-law are in complete denial. They say it is just dystonia or a muscle disease. My mother had Parkinson's for nearly 30 years. I know what I am seeing. Father-in-law had the usual HD symptoms movements, etc, but hubby and daughter have the behavrioal problems, problem solving and judgement issues, no movement issues as of yet. Hubby is 55. Father-n-law did not present until his mid 50's and we think when he quit drinking the HD presented. The drinking was masking it we think. Keep reading, researching, praying,and encouraging both spouse and her family. Not many people fully understand this disease. It is more than just movements and the usual HD symptoms as we both know. I would advice you to keep it quite, which is ridiculous to have to go through something like this alone, but not many understand or will ever get it unless they experience it firsthand. I may have lost two jobs by talking about it,(insurance purposes), and rumours. At least that is what I am suspecting anyways, along with my age 50 and the economy. HD awareness needs to be made more aware to the public. Parkinson's has come a long way but HD is still very vague. I sincerely hopes this helps in some way. I'm here if I can help! cathyw2244 
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She sounds like me, I am adopted and just got my blood test and the MRI is next. The doctor said I probably do have it, but three weeks for me to find out also. The stuff I read on the internet seems scarier than my doctor makes it out. I have alot of symptoms, falling dropping stuff, people say my speech has changed. I am now 39 and scared.
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