Hi Lin, Sarah,
Lin, it's good to be back and involved in the forum. I would have preferred to move to a bungalow, but the market sitiation and Angie thinking it would be too much for me helped in the choice of a conversion.
I know what you mean about the words, very embarrasing, and I forget words mid sentence too. The Voice Amplifier is helping though. I hate using the phone!!!!
Hello Sarah, thanks for your responce. It does seem as though your father and I are at a similar stage although I am still able to eat my food for now.
Is your father able to get involved with the forum at all? Or pass his feelings ect on through yourself? I am fortunate enough to be able to do this and intend to do so for as long as I can because I want to share my feelings and experiences of what is such a devastating condition!! I see the sadness and helplessnes in the eyes of my wife Angie, my parents, my two sons, my sister and three brothers and their families, my wife's daughter and two sons and the rest of the family, and it's heartbreaking! I wonder how your father feels when he looks at you? I can only imagine how you and your family feel!
I feel extreme frutration and embarrasment over my poor mobility and dexterity after being a highly skilled Master Pattermaker and Woodwork teacher for people with learning difficulties. Your father must have similar feelings.
As for Hospitals, I dread having to go in! Only last week I was rushed in to A&E with very low blood pressure and still nurses were attempting to to make me stand on a step and get onto a bed independently, telling my wife not to fuss when she tried to explain. On the outside I suppose I stilll look well as might your father, but that is far from reality. Why can't professional staff listen to individuals and their families in stead of expeting conformity or jumping to conclutions?(I was once told I would have to conform to ward times for medication - I had major problems after a few days!).
On the communication side, I worked with people with learning and communication difficulties in Oldham alongside the Communication Therapists as a Total Communication Co-ordinator. I have spoken to the Manager their, Allison Mathews who, along with another therapist, Ann Dean, developed a concept of Total Communication. Within this are many methods of communication to suit different individuals. Allison has suggested that you speak to your father's Speach Therpist, ask them to contact Allison mentioning my name and Total Communiction and see if there might be a communication method suitable for your father and your family. I'm sorry but I can't give you a Telephone number for Allison.
I hope this is of some help and creates some interest for your father.
Wishing you and your family well
Eric
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How rare is rare in MSA ??
