Strange but this has to happen to me, what may ask?

oldman1952

Registered User
Apr 4, 2014
45
0
Hello everyone, I have not been on for a while but have been battling with Frontotemporal Lobe Dementia. For how long I do not know but was diagnosed in September last year, after completing an Ace111 Adenbrooks scale and I scored 71. This was after seeing the consultant older persons psychiatrist and it was one of the diagnoses he thought I could have. Every thing went quite quick from there, after a year of waiting!!!

I have been seen by a link nurse from the society every 6 weeks to help my wife and I get things like finances in order. She is like a breath of fresh air. Any one who knows me will also know that I write quite long posts to help with others who have problems with their health. It is me this time because I was just doing a little research and I am going to have to see the consultant when I come back off my holiday because I am being treated for FLD but I also have all the symptoms of Motor Neurone Disease. So I go to bed stiff all over from my very weak and sore neck to the tip of my toes. Then wake up in the morning after a night of facilitations or that my back muscles vibrate as if I am rolling around on a great big roll of open bubble rap. Every thing has a different feeling from an ache to cramp to sharp shooting pains moving down the spine to the hips and they give way as if I do not have any muscles there at all.

All I want to know is the prognosis of both, because I know what it is for the first problem but the second problem also has a poor prognosis. They also quite often go together, FLD first then MND or the other way round.

So my wise and wonderful friends, can you give me a time limit or any advice on how long I might have. Because I now for the past 8 weeks have just felt grotty. However I have enough medication to sink a battle ship. I also query if there is anybody else out there with the same conditions. Plus the Dysphagia which is getting worse.. Thank you every on and hope you can understand the reasons I am asking some rather brash questions. Best regards Oldman1952 .
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello @oldman1952
My OH has FTD and is being investigated for motor problems too. You are right that FTD and MND often go together.
The literature seems pretty pessimistic about the prognosis for both FTD and MND, but I am a member of an FTD support group and there are members there who have this, or are carers of people who have this, who have lived for 10 years or more. Others have had fast deterioration and passed away within a couple of years.

So, the answer is, there is no knowing
Use your time to do the things that you are still able and enjoy however much time is left - whatever that is. Im sorry you have been feeling grotty, but this may not be due to the FTD/MNR
 

oldman1952

Registered User
Apr 4, 2014
45
0
Hello @oldman1952
My OH has FTD and is being investigated for motor problems too. You are right that FTD and MND often go together.
The literature seems pretty pessimistic about the prognosis for both FTD and MND, but I am a member of an FTD support group and there are members there who have this, or are carers of people who have this, who have lived for 10 years or more. Others have had fast deterioration and passed away within a couple of years.

So, the answer is, there is no knowing
Use your time to do the things that you are still able and enjoy however much time is left - whatever that is. Im sorry you have been feeling grotty, but this may not be due to the FTD/MNR
Hi there Canary, unfortunately the symptoms of MND that I am having are as if I am helping a doctor writing a paper on MND. This morning I was in bed and my leg went into spasm and I screamed out. It would not shift or stop being in spasm for at least half an hour or more rolling around on the floor understand about what you are saying but everyone says the same just to get me through the day. Thanks again for your reasuring comments. Best regards Oldman1952.