I guess I should have replied to you on this thread. My heart goes out to you, and I know where you are coming from. To cut a long story short, my hubby was diagnosed with Huntingtons Disease 4 years ago, there was life changing for us. He was medically retired at the age of 49, as cognitively he struggled with thought processing. He suffered major depression, after the diagnosis and the thought of not providing for his family. With medication it was all finally brought under control last year, and for the first time in Nov, I thought we had started to get our lives back, and looking forward to some positives, with HD I have known he would probably not live past the age of 65 maybe.
In April we went on holiday to Tenerife, he had a couple of falls, and when we got home seemed unsteady on his feet, and had shakes in his arms unable to feed himself, 3 trips to the doctors, and oh nothing wrong it’s the HD. I argued saying it does not come on this fast, took him to A&E they did basic blood tests and came to same conclusion. This happened twice, finally I took him again on 12 June, practically fell out with them, and insisted they did something, at first they said he was dehydrated, and put him in a drip, I refused to take him home, and after admitting him to hospital, they discovered MM, he was very poorly and confused and eventually they stabilised him and started the treatment, which was stopped in phase 2 as I mentioned.
the roller coaster of emotions I can’t describe, how my darling husband can be so poorly and have this dreadful card dealt to him in life. All hope was taken away 2 weeks ago and all, I can do is cry, I try and be brave with him, but it is a heavy weight to bear. The last couple of days the pain in my heart has got worse, all I can say to you is share you fears with your family, friends let the tears and frustrations out, it is the only release. No one can really understand how you feel, I have felt it all, sadness, anger, frustration to name a few, oh and jealousy of people getting on with their lives, not their fault, but I feel so cheated with life for me and my husband. This does not really help you cope, but I wanted you to know you are not alone.
sadly with MM it is out of the hands of the consultants, and I think they are preparing you, I case it fails, they do t want to build your hopes up too much as you will have further to fall. I am thinking they are doing their best, it is a terrible illness and if not caught early, is very hard to treat from what I can see. I have found it very hard to understand how it can go undetected so long.
take care xxxx
