 |
 |
Dear all, I hope there is someone within this worldwide group that can help. My partner's mother was diagnosed with PD nearly 5 years ago (when she was 58), then as Parkinsons Plus over 2 years ago. She does not have any tremors, or freezes, or what I have been told is the 'typical parksonian walking moevement', but does have a joint stifness. This started in her right arm, growing to a general movement stiffness. Her voice started to deteriorate at least 2 years ago, so that no-one could understand what she was saying so then she tried to speak even faster. One speech therapist was no help, and she ended up using a small typing screen for people to read so she didn't have to try to talk. Another therapist gave her an amazing leap forwards. She was given a card with all the letters of the alphabet, and told to point to the beginning letter of each word and then say the word - and hey presto - she was able to communicate by voice (using a different neural pathway), not 'normally' but at least it was possible to understand about 9 out of 10 words. The biggest problem now (6 months later) is she hates using this card, so will try 3, 4, 5 or more times without the card, which is very frustrating for all around her (as well as herself). She has started to have more falls and seems to wish to make herself housebound, no matter what encouragement we try and give her. It seems that her medications are giving her more side effects than help. I don't know the details, but she has 3 types of pills: one that lets her walk more easily, one that lets her eat, and one that helps her to talk. None of these can be taken in conjunction with the others. One of these tablets has the side effect of making her screw up her face and she can barely open her eyes, which she finds distressing. Recently, she has been getting this effect almost all the time. I believe she had a brainscan about 3 years ago, and it did NOT show much evidence of damage to areas normally associated with pd'. She has had lots of blood tests for other diseases, but the doctors do not seem to have had any success with any medications for any of her symptoms. Does anyone else know of any symptoms like this? I would love to contact others who know more about this, to know what may be the best things to do to help. Thank you Chloe [log in to unmask]