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User profile for Claire Penn
Name: Claire Penn
Alias: Claire Penn
Forum Status: Member
Posts:54
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Re: No improvement
Posted at: 2021-05-29 04:56:00
Dear Tabitha The important thing that Sam has is you. Though he may not unedrstand everything that you say to him, talk and talk to him Talk about what he is feeleing - don’t try and hide your own feelings either. Just be there for him and know that we are thinking of you both from all over the world and wish you strength and fortitude. My Uncle still lives in Nairobi so if you send me your telephone number I will ask hom to phone and give you some advice or someoene else to talk to.
My warm thoughts
Claire
Re: No improvement
Posted at: 2021-05-25 01:11:35
Dear Tabitha
I am so sorry to hear that there has so little progress with your son. In your message I snese that you feel frustrated and despairing. Please contact Nairobi hospital and ask if there is a speech therapist or psychologist who works there or is attached to the Neurology Dept. If you can get me their name, telephone number or e mail I will try and help
Claire Penn
[email protected]
Re: Information on aphasia needed for my mom
Posted at: 2021-05-20 05:49:38
Hello Frances
Thanks for the infomrtaion about your mum. I live in a multicultural country and often we also have difficulty finding materials and kits which are in languages other than English. However there are probably materails readily availaible in Italian which are not aphasia specific but which can be adapted to become useful for commuinctaton purposes. Magazines and newspapers as well as website aticles in Italian may be a very useful basis for conversation and communication opportunities. Choose a topic of personal interest to your mother - eg recipes, art, wildlife which will make it more fun!The content can be made more simple if necessary through summarising main points or even thorugh reading and recording so your mother can listen to and replay what you have recorded.
You mention that your mum also has a heraing loss ,which makes communication more difficult especially when there is background noise. Have you consulted an audiologist? She may very well beneft from the fitting of a heraing aid, so perhpas you can get a referral via your doctor.
Alternatively I woudl suggest that when she has to communicate, you make sure that the environment is quiet for her and that she can see the lips of those she is talking to her. This makes things easier!
Best wishes to you both
Claire Penn
Re: I know its slow
Posted at: 2021-05-20 05:37:24
Dear Will
Thank you so much for writing and for sharing some of your thoughts on living with aphasia. I am so glad that you have made contact with a group and are finding it helpful. It sounds as though you have a lot of activities that help you forget about your aphasia, although sometimes things which involve communication still sound slow and difficult. As you become the “expert” in living with aphsia and gain more understanding about ways to avoid such difficulties, and how to make things easier you will be able to share these strategies with others. It’s great to hera form you on this website ! Keep the advice coming
Claire Penn
Re: Partial aphasia
Posted at: 2021-05-07 04:00:43
Dear Nancy I am sorry to hear about the loss of your boyfriend . He certainly sounds like an creative communicator! You pose an inetresting question to which of course I can only suggest a couple of possible answers. The first thing is that it may be that using gesture and pointing was part of his own individulalstyle of communictaing. Many people use a lot of non verbal communication as a stylistic device during converstaion to add colour , richness and emphasis to what they are saying. Gesture is also very useful in conversation when there is a word finding difficulty. Sometimes it is hard to retrieve a specific word or name and pointing will come to our rescue. This type of difficulty which has also been described as an anomia may also happen as a consequence of even very mild injury to the brain, or a mild loss of oxygen. Though I do not have the details about your late boyfriend’s lung disaese, if this was a chronic condition and affected his oxyegn levels, it may have cause a slight diffculty in the part of the brain responsible for the retrieval of such words and directions. That part of the brain (at the junction of the parietal and temporal lobe) is very suscpetible to periods of anoxia.
This of course is only a guess, but it sounds as though you and he had very good ways around his problem and that indeed he should be remebered for his unique communication style!!
Best wishes
Claire Penn
Re: poor judgement
Posted at: 2021-06-02 05:07:06
Dear Dan
I am so sorry to hear aboput your relatives´ condition. PPA is a rather confusing diagnosis and sometimes it is not easy to unravel its components.
What has been found is that in some cases, the problems are not restricted to language diffculties only. After some time, the condition may “spread ” to other aspects of cognition, including planning, judgement, memory and reasoning and may begin to look like some other progressive cognitive disorders such as dementia..
You do not say how long he has had this condition, but I suspect that this might be what is happening in this case.
This of course has many implications for the family as the diffuclties become more than communication ones and require some changes to how the family cares and copes with this porblem. I would recommend that you get some professional advice for the diffculties you describe and take some steps to make sure that your relative is safe . It might help to get the opnioin of a neuropsychologist or a speech language pathologist . Caring and copoing for persons with cognitive changes can be a challnege but there are a range of web based resources for exmaple on Alzheimer´s disease and its early stages which may of value.
Above all please do not take this journaey alone but find someone else to help
Claire >Penn
i
Re: Primary Progressive Aphasia
Posted at: 2021-06-04 08:50:32
Dear Linda
I am very sorry to hear about your sister and the diagnosis that she has recieved. It is an unusual daignosis, and sometimes it manifests in very different ways. Some people consider PPA to be a progressive deterioration in speech and langauge skills only. However there is increasing evidence to suggest that after a while, other mental aspects become progressively involved too, so the original diagnosis of aphasia becomes more of a condition like dementia.
There are many different types of dementia (such as Alzheimer’s disease) but often we cannot know for certain what the exact diagnosis is or how the condition will progress.
It sounds as though there are other aspects beside speech and language that are now affceted in yoru sister and you are right to be concerned about her visual , driving and orientation abilities as well as her memory.
I think that it is very important to get some professional help and an opinioin on these aspects too..
The first is a confirmation of diagnosis. Then you should put in plan some steps which will make both you and your sister feel more comfortable. Unfortunately this is a progressive condition, but the fact that it sometimes progresses very slowly enables the family to put in place steps which prevent things from happening later. The enviroenmnet in which such a person lives is very important and can be structured so as to be maximally facilitating of interactions. the goal is to reduce communictaive frustration as far as possible and to ensure your sister feels safe and loved.
I hope that there is a neurologist and a facility in your area who might be able to put you in touch with rehabliitation therapists who can guide you as how best to manage.A speech language pathologist will be able to advise on how to implement some effective communication skills.
This is a long road to travel for you all but there is great support you can find from others and I know that there are some very good support groups for persons who are caring for a loved one with any form of dementia or progressive disease. This is not something you should have to manage by yourselves. There will be others who have been through this and can tell you what works and what does not . the insiedr’s perspective is often so much more insightful than just a professional viewpoint and I urge you to share .I do hope that you will all find the tsrngth to deal with this condition. Plesae do not hesitaite to contact me again.
Claire
Re: 7 years of aphasia
Posted at: 2021-05-24 11:53:57
Dear Kit
Your account of the long struggle that your mother and your family have had with her aphasia makes for very inetresting reading . How frustrating it all seems to be. It is true that 7 years is a long time and that patterns of communictaion (or miscommuincation) seem to have set in which are causing a lot of distress. Even though your mother seems to have a very severe communication difficulty and possibly limited insight into the effect that it is having on you, I do think that the picture you describe can be modified. I agree with Judi that some speech therapy at this stage might be just what is needed. It might also help to find a couple of volunteers who can work with you mother and encourage some communication using methods other than words (writing, pointing, drawing)
Many people think that change cannot happen so long after a stroke, but I have seen very importnat shifts happen . These may be not be changes in speech but they can include changes in social networks and life experiences. The goal is to avoid situations and interactions which are going to lead to frustration and withdrawal and try and fidn things that everyone finds fum in, even if these are non verbal.
I urge you to find some speech therapists in your area who will be able to give you some ideas and support.
Thank you for sharing this meassge.
Best wishes
Claire
Re: stroke
Posted at: 2021-05-21 20:02:45
Hi Bengu
I am so sorry to hear about your mother. Unfortunately conditions such as diabetes tend to put persons at risk for stroke and it sounds as though you mother has been left with some significant symptoms including aphasia. You do not mention how long ago she had the stroke, or whether her understanding has been affacted as well as her speech. However I am very pleased that she is receiving therapy and I would urge you to continue with speech therapy for as long as possible. Even though expression may be very difficult, if you mother is able to understand some of what is said to her there are ways of making things less frustrating for you all. Gradually you she and the family will learn ways of making communictaion easier. Sometimes it helps to use gesture or drawing, even some writing.Together with the therapist I am sure you will discover some ways . It might alos help for you to meet some other people who havebeen through this process. This website might be useful for you to make such links.It does take time, but I do hope that things will improve for you and that you focus on asmall steps and making suire that your mother feels that you understand the frustrtaion she herself is experiencing. Best wishes to you all Claire Penn
Re: question about aphasia recovery
Posted at: 2021-05-21 19:34:45
Hi Riona
Thanks for the question. It is a difficult one to answer, but the words of one of my neurologist mentors stick in my mind, She said that after a stroke, you will be seeing things at their very worst and that anything after that will be an improvement. This of course is a simplification ,but provided a peson’s medical condition is stable and there is not a recurrence of a stroke or the interfering pfesnece of a severe depression, there should be some positive change in the condition. This will depend a lot on the type of aphasia and the severity.In cases of very severe aphasia, there may not be a recovery in expressive language. The focus of all our efforts however would be to look at other ways of commuincating and on modifying the environment and the ways of communicating in order to maximise mutual understanding. Even though a person may not be able to use words, over time and with practice communication can become easier and less frustrating. Sometimes when there is very severe aphasia, we give up too soon and I urge you to persevere with professional help and possibly to change the direction of therapy. The goal may not be incrreasing the thecquality of language but one can certainly strive for chamges in quality of life. I know persons with aphasia who have felt continued improvement in their communication up to 15 years after their stroke. Though each person is different and I cannot begin to know the reasons behind your question,I do hope this helps. Claire Penn

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