Jennifer51

Hi

Haven't seen you around for a while so thought I would check in and see how you are doing.

How are you?

Mark had his PEG tube fitted on the 25th June - he had a tough time in hospital - mainly through ignorance. It seemed a little bit like the nurses couldn't be bothered to spend an extra minute trying to understand Mark and just kept shoving feeds through his new tube until he felt like he was going to explode. Still he is home with me now and I will start to build him back up - he lost 4 kilos in 4 days in hospital.

I have no other news really other than life goes on.

Hope you are ok and hope to see you posting again soon.

Rachel

Hi Jenn, How are you doing? I haven't heard from you for a while.... i just got back home from seeing Richard's Dad. He is not doing so well. A long fast trip. Feeling pretty tired today. What is new with you? I feel pretty good . I have my new little Apple Device. I really like it and just need to practice,so not to be soo slow.. Hugs, Linda

Thank you so much for writing to me. I was having a v.bad day,and was sounding off.I didn't really want to publicly explain in detail that dad has done very well for himself over the years and money is not really an issue (lucky him lol)so doesnt qualify for anything.His arguement is why has he worked to provide for,everybody else who needs help ( his tax bill £110,00 last year)And when he really needs help he has to pay Again cause he's too well off. He just gets very frustrated .We try to tell him that he cant take it with him, and we cant afford to inherit it so spend it on you. Trouble is no amount of money buys a miracle
I'm glad you managed to have the forsight to sort out your inheritance tax issue early enough. Very sensible, dad only had MND for 3 years and Will needs to be in place at least 7 years . Never had a Will before cause he was going to live forever lol. A whippersnapper at only 67 !!
Im so glad you fought for what should be your entitlement as well, good on you.

Jennifer you can email me also at [email protected]... would love to hear form you anytime.... I get on the puter almost everyday... I am sad that you had such an awful day. Sounds just terrible.. So sorry.. Lin

Hi ,thanks for answering me. I have a wonderful family ,but I want so to protect them from all that I am feeling. I amaze myself how strong they all think I am. When I am alone I go lie on my bed and cry into my pillow. It is good to have someone to talk to that is going through this... No one can even begin to understand the thoughts and feeling we have with our skin crawling .. reminds me of worms under my skin. It is spsreading to my shoulders and hands and little in my feet. I get little shock like feeling and then I can feel the twitching. Does this sound familar ? I think I am glad that I have Bulbar because i don't want to love a long life not being able to do the things i want to do. As long as I can move and do things for myself I can give up the talking and i guess eatting... So are you gett ing a feeding tube soon??? I think that is the only invadesive help I want. Sorry to sound so clum... To day was not such a good day... Tomorrow will be better... Hugs, Lin

Hi Jennifer, I love reading your emails and Roses...smile.. You both always sound so upbeat to me. I don't get on the forum too much and when I do i just read mostly. I'm afraid I am not as upbeat as the two of you.sorry to say. I am really trying though.. It is just when something new pops up it takes me down again.... I will be going gor my 3 month ck up in a week... Going to the clinic for the first time also. Wonder what news I will get????? Hug, to all, Linda

Hi Jennifer... The neuros never thought i had Myasthenia, they thought i had a ALS like disorder. It was my pulmonologist who read my pulmonary function test. He found it to be respiratory muscle weakness so he ordered my first chest ct scan after four years of complaining of chest pain, thought to be costochondritis. He wanted to make sure i did not have a pulmonary embolism, low and behold he found a thymoma instead. So he is sending me back to the neuros (ahhhhhhhhh) one that specializes in Myasthenia Gravis. Muscle weakness and thymoma is what is making them think i have it. I have droopy eyes but not like the ones you see in pics of people with MG and i have brisk reflexes. I also have muscle wasting but i read that people who have MG for a long time can develop muscle wasting and a thymoma... Best of luck, Sam..

Hello Jennifer... I read on the forum you have been in hospital... I'm so very sorry to hear that. Are you on the mend now? I really hope so!

Hi Jennifer, It seems like we always just pass each other on the forum. I wanted to tell you how much I appreciate your outlook and the information you share. You never complain and are always ready to help others. Your family is blessed to have you. I hope you slow again with your progression.