Today we had a visit from Brenda who is a PhD Research Student. Dignity Therapy has been used with Cancer patients and now they are trialing it on MND patients. Roger was asked to participate in the study and agreed. He will be answering lots of questions and putting together some of his life story. Our children have encouraged Rog to write down some of his story, but he hasn't, so this is a wonderful opportunity to get something down in writing. It promises to be a very interesting time, but also a painful time as questions are asked and answered and memories recalled.
The next visit from Brenda will be on Friday. I don't have to be here with Roger. I think it will be good for him to be on his own with Brenda. She is a lovely lady and very gentle. Just the person to be doing this sort of things.
Some of the questions asked:
Tell me a little about your life history; particularly the parts that you either remember most or think are the most important? When did you feel most alive?
Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember?
I'll keep you posted on how it all goes.
Wednesday 27 July 2011
Saturday 23 July 2011
MND PAMPER DAY
Today Roger and I went to the MND Conference Centre to have some pampering. This is a special day that MND holds a few times a year to treat people with MND and their carers to some TLC. We had a great time and it was good to meet other people in our situation.
We are very thankful for the wonderful volunteers and MND Care Advisers who give of their time to put on this special day. They do an amazing job and keep on eye on everyone. WELL DONE we both say.
Yesterday Roger came into work and did his usual few hours of scanning and then entertained 3 lovely children - Thomas, Lydia and Daniel - to a game of Zug um Zug in the afternoon. Roger thoroughly enjoyed their company and so did Pepper!! I even managed to make some 'Honey Joys' for them to eat before I went to work.
We are very thankful for the wonderful volunteers and MND Care Advisers who give of their time to put on this special day. They do an amazing job and keep on eye on everyone. WELL DONE we both say.
Yesterday Roger came into work and did his usual few hours of scanning and then entertained 3 lovely children - Thomas, Lydia and Daniel - to a game of Zug um Zug in the afternoon. Roger thoroughly enjoyed their company and so did Pepper!! I even managed to make some 'Honey Joys' for them to eat before I went to work.
Thursday 21 July 2011
ONE DAY AT A TIME
Yes, it has been many months since I have last blogged and I am hoping to change this in the coming days.
Roger and I are on a very difficult journey. Sometimes we feel life really sucks and has dealt us a very tough blow! Why? We can't help asking ourselves this question. But life goes on and we must live it as best we can, making the most of our situation and loving each other and caring for each other 'till death do us part'.
When I think of how Roger was in January (my last post) and how he is now, it just breaks my heart. He can no longer walk with ease and each time he does walk (with his dictus splint on his left leg to help with foot drop) I just about freak out that he will stumble and fall. If he does, it will be very hard for me to pick him up from the floor. He now weights 69kg (he was 80kg before he was struck down with MND).
His speech is not clear. Sometimes it is better than at other times. Most people finding it difficult to understand what he is saying. He has always had a lovely speaking voice and a beautiful singing voice. Singing makes him cry these days (as he sings in Church). What must be going around in his head. I don't even want to go there.
Each morning I help him to get dressed. We have a shower stool waiting to be used, but he's not quite ready for it yet. But it is here when the time comes.
He is getting used to using a VPAP machine to help with his breathing at night. He doesn't need it really at the moment, but the Specialist wanted him to get used to it while he is not too stressed about his breathing. He has a regular respiratory test and he is about 50%. The next test is on my Birthday 10 August! Won't be fun to have to go to the hospital on my Birthday, but it couldn't be arranged at another time and it needs to be before we fly to Melbourne on 16 August. Flying could be a problem for Roger.
On Tuesday Roger became quite upset when he was shaving. He couldn't finish and it really upset him. He has been growing a nice beard this past month and it looks very smart. But he still likes to keep it trimmed under his neck and on his cheeks. Today he managed to do it okay himself but I put on the cream he likes.
So, how is his body coping. He has lost complete use of his left arm/hand. It just hangs at his side. He has a sling, but it is not comfortable around his neck. His left leg has almost wasted away and I am amazed he is still able to walk. He right arm is weakening but his hand is okay. this is the opposite to what happened with his left arm. It was his fingers that really went first and then his arm. What a sinister disease this is. His tongue has become very thick and the muscles in his lips have quite gone. This means he often dribbles and eating food is slow and difficult and can often lead to tears.
At last he has agreed to have a feeding tube inserted. We are waiting to hear from our Neurologist when this will happen. Hopefully before we go to Melbourne on 16 August.
We try and make the most of each day, be kind to each other, hug each other each day and most of all we try and laugh as much as possible (to balance out the crying!!). We know we have much to be thankful for, with a wonderful marriage of 35 years and many, many happy times together and wonderful places visited. Lots of lovely friends who love us, all over the world and a beautiful family.
Yes, we do count our blessings and thank our Heavenly Father for each other and all he has given us.
Tomorrow is another new day..........
Roger and I are on a very difficult journey. Sometimes we feel life really sucks and has dealt us a very tough blow! Why? We can't help asking ourselves this question. But life goes on and we must live it as best we can, making the most of our situation and loving each other and caring for each other 'till death do us part'.
When I think of how Roger was in January (my last post) and how he is now, it just breaks my heart. He can no longer walk with ease and each time he does walk (with his dictus splint on his left leg to help with foot drop) I just about freak out that he will stumble and fall. If he does, it will be very hard for me to pick him up from the floor. He now weights 69kg (he was 80kg before he was struck down with MND).
His speech is not clear. Sometimes it is better than at other times. Most people finding it difficult to understand what he is saying. He has always had a lovely speaking voice and a beautiful singing voice. Singing makes him cry these days (as he sings in Church). What must be going around in his head. I don't even want to go there.
Each morning I help him to get dressed. We have a shower stool waiting to be used, but he's not quite ready for it yet. But it is here when the time comes.
He is getting used to using a VPAP machine to help with his breathing at night. He doesn't need it really at the moment, but the Specialist wanted him to get used to it while he is not too stressed about his breathing. He has a regular respiratory test and he is about 50%. The next test is on my Birthday 10 August! Won't be fun to have to go to the hospital on my Birthday, but it couldn't be arranged at another time and it needs to be before we fly to Melbourne on 16 August. Flying could be a problem for Roger.
On Tuesday Roger became quite upset when he was shaving. He couldn't finish and it really upset him. He has been growing a nice beard this past month and it looks very smart. But he still likes to keep it trimmed under his neck and on his cheeks. Today he managed to do it okay himself but I put on the cream he likes.
So, how is his body coping. He has lost complete use of his left arm/hand. It just hangs at his side. He has a sling, but it is not comfortable around his neck. His left leg has almost wasted away and I am amazed he is still able to walk. He right arm is weakening but his hand is okay. this is the opposite to what happened with his left arm. It was his fingers that really went first and then his arm. What a sinister disease this is. His tongue has become very thick and the muscles in his lips have quite gone. This means he often dribbles and eating food is slow and difficult and can often lead to tears.
At last he has agreed to have a feeding tube inserted. We are waiting to hear from our Neurologist when this will happen. Hopefully before we go to Melbourne on 16 August.
We try and make the most of each day, be kind to each other, hug each other each day and most of all we try and laugh as much as possible (to balance out the crying!!). We know we have much to be thankful for, with a wonderful marriage of 35 years and many, many happy times together and wonderful places visited. Lots of lovely friends who love us, all over the world and a beautiful family.
Yes, we do count our blessings and thank our Heavenly Father for each other and all he has given us.
Tomorrow is another new day..........
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