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Posts (19)

Oct 10, 2017 · Cerebellum Brain Atrophy in Stroke & Cerebrovascular Diseases

HI Noreen,I have been a bit quiet of late. I think I have joined too many sites and am not keeping up with all of them. I do admire your move. Very brave but the compensation of having family near must give you joy. I don’t think I could survive with all the rain and only 4 hours of sunshine in December. My duvet is very snug in our winter and I love a cuddle but your extremes would be too much.

It is a mystery how this cerebral atrophy has such different symptoms in different people. I am dizzy and clumsy and topple sometimes but my speech is not affected yet. We have just started altering our bathroom to create a wet walk-in shower and room will be wheelchair friendly. Thinking ahead.

We have had another blow. My husband has to have a radical bladder removal due to cancer and adjust to a permanent bag. Such a psychological adjustment for him.

I would love to see a postcard.
Best wishes to Howard.

May 21, 2017 · Cerebellum Brain Atrophy in Stroke & Cerebrovascular Diseases

HI Noreen. I am sorry I have taken a while to respond. At the moment I am nursing my husband who has had a full knee replacement. On the run (sort of) so have neglected my correspondence. Well done on all the driving you did to reach Alaska. My daughter now lives in Regina (before in Indian Head) now but I remember Swift Current on the journey to Banff one year. I will Google your Alaskan town’s name as I only know about the Inside Passage etc.
I am quite excited to have heard about another MSA sufferer that lives in Johannesburg. This through the closed Multiple System Buddies Facebook. Now I know of two here in SA. If you are on FB look them up. It is totally private.
You say that HJ now has a walking aid with wheels. I am not quite there yet but now take two trekking sticks on my walks with the dogs and one for the the shopping. At home I am still fine in the house. I just have to pace myself and lie down for short times during the day when I feel light-headed.
My speech is still fine but have got the name of a good therapist if needed in future.
Tell me more about your new home.

Jan 16, 2017 · Cerebellar Atrophy in Children in Stroke & Cerebrovascular Diseases

@godisnumber1 Hi. I have MSA and I am 74. I have never had a seizure and I don’t think it is symptom in MSA. I agree with Noreen. I have not heard of someone as young as your grandson having MSA. Maybe he should go for a second opinion or further investigations
Best wishes. Liz/pec2884

Jan 4, 2017 · Cerebellum Brain Atrophy in Stroke & Cerebrovascular Diseases

@howardjames. Hi Noreen. It seems I am on a similar course to your husband. I was diagnosed 2 years ago at the age of 72. So I am lagging a little behind him.
I live in a coastal village, St Francis Bay in the Eastern Province of South Africa. A real paradise. Try and google St Francis Tourism and have a look.My daughter married a South African doctor and they have live in Saskatchewan for 25 years. They have one daughter now 20 years old. A true Canadian. I have been to visit them at least 7 times but it is now very expensive for a South African to travel with the poor state of our Rand to Dollar..
How interesting that your husband was part of a group Habitat Humanity Build. I often see news bulletins of groups like that. Do enjoy Alaska. We went on an Inside Passage cruise some years ago in winter. Loved it as we never see snow unless we travel to our highest mountain areas.
I have been investigating rollators for future use and have come across Active Access which allows one to walk on rough terrain and even snow!
Best wishes

Jan 4, 2017 · Cerebellum Brain Atrophy in Stroke & Cerebrovascular Diseases

@hopeful33250. Hi Teresa. Thank you for the wishes. I am a member of a church but I have not told anyone of my MSA. It is a step I must take but then it would be real. I have not quite accepted the diagnosis. I have one special social worker that I speak to. I cant get to see her that often as she is in our nearest city which is about 130 kms. I seem to be waiting until it becomes more obvious to those in the village and I can’t hide it anymore. I know this a problem I must come to grips with. Hopefully soon this year.

Jan 3, 2017 · Cerebellum Brain Atrophy in Stroke & Cerebrovascular Diseases

Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth. I see the neurologist every 6 months. I have many more questions to ask him now as at first I was in complete meltdown and denial. Now I have read up various articles and now I realize just how difficult it is to make a probable diagnosis. It comes after many visits and as different symptoms develop. In MSA the categories are possible, probable and definite. The latter only at postmortem. The timeline I am expecting is 5 -9 years. I sometimes wonder is being on anti-depressants gives one the feeling of living in a happy bubble. I suppose it is better than being morbid. I have not had a decent cry yet and my family don’t ever speak of the MSA so I get very lonely at times with no one to talk to.

Jan 2, 2017 · Cerebellum Brain Atrophy in Stroke & Cerebrovascular Diseases

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

Jan 1, 2017 · Cerebellum Brain Atrophy in Stroke & Cerebrovascular Diseases

Hi Noreen. I do get the user names mixed up. Glad to have them sorted now. I am struggling at the moment with dizziness, fatigue and balance. We are having a blisteringly hot summer at the moment with water restrictions and gardens oh so dry. My daughter lives in Regina, Saskatchewan and has such cold weather and snow i wish I was there.
I am excited to have traced another MSA sufferer in SA other than Sonja. Someone else to chat to.
Hope the hunting goes well and your trip to Alaska.Everyhing of the best for 2017