I joined the group early on this year with a tentative and provisional diagnosis for my husband F of PSP/CBD. I have followed post and been convinced that it was PSP. As time has gone on the differences in symptoms has become greater. Some are still the same, the palsy, gripping hand, stuttering, shocking. But the dementia, the cognitive breakdown is becoming dominant.
We have had further test and Frontal temporal is now the preferred choice for diagnosis. It may seem odd but I would have preferred PSP. I now have the genetic implications for the children. I am angry, so angry. Waiting for the despair stage and then maybe with luck I will go back to numb.
Is anyone else out there dealing with FTLS?
Written by
hellebore
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Thank you Heady. You may be sending a virtual hug through cyberspace but it's something I no longer get in the real world, so it means so much. Bless you.
Sending you lots of love and big hugs, I know exactly what you mean about not getting hugs any more, it's so hard and lonely, I am thinking of you, stay strong!....Pat xx
My husband has ftl damage as part is PSP, it is mentioned in an excellent booklet about cognition issued by PSPA. It used to be called Picks Disease.
A friend of ours has the genetically implicated fld that you are concerned about. I think it was called semantic dementia as she initially started to call things by the wrong name, 'could you pass me the water please' meaning the salt, that kind of thing.
They were alerted as her mother had been the same at a similar early age, sixty.
She has two adult children. One already has children so decided not to be tested. Her son and his wife haven't started a family and are still to decide. They all had specialist genetic counselling available.
As you say, knowing them, makes me 'grateful' it is PSP for us. My heart goes out to you. I know that there is a support group for fld, it may even be called Picks disease society or something. X
It's an extremely difficult situation and my heart goes out to you. Sending you lots of love and prayers and a hundred thousand hugs.. (My younger two sons are in boarding, and that is what they say before hanging up the phone..)
Hellebore I think you are close to me in North Wales, if wrong forgive me, may I suggest that you come to our PSPA group meeting in Bodelwyddan where you and if you want your hubby can have a little bit of social contact with people who are on a similar road. Our next meeting is 24th Nov. If you want address details please contact our coordinator, Rakesh, on pspanorthwales@gmail.com. You would be most welcome.
Best wishes with your journey and hope you get the help you require.
Hi Tim. Thank you for the invite. Yes you are right we are in the south of Denbighshire. I know you have asked me before. I do think it's a good idea to meet others but F is still in denial. He won't accept that he won't get better. We are not quite there yet. I would love to exchange notes on our chaotic and mismanaged health trust. They won't assign a social worker to us because there aren't enough to go around. Thank heavens for Care and Repair though.
Thanks Hellebore, understand completely I will keep you informed of meetings for when he does. Are you on CHC? If so the NHS social workers are useless as only interested in leaving hospital not palliative care. District nurses I find are very good it was the South Denbighshire team that got us CHC in first place after M fall last year. The snag was that CHC removed the Denbighshire Social services contacts which had set up Care and Repair (agree very good and practical they arranged and monitored the major adaptations to our bungalow) and a very good SW who understood PSP through her mum and provided not only practical but time to help M come to terms with PSP. The BCW trust management is chaotic but I have found the nurses and doctors are supportive and willing to learn, hope your experience is similar. Thankfully not had to spend more than a day/night in Glan Clwyd as I am certain that would put M off.
Hi Hellebore , Another area of help which is not connected to BCWUHB. Denbighshire Carers Trust (NEWCIS- 01745 331181) can do an assessment which can open way for a sitting service (crossroads as was) which can give you some time out.
Know what you mean about those with high IQ seeming to be affected more steeply but M also very practical so I think accepted she has a bad condition and needed help but she does not accept it is terminal yet.
My wife has PSP and was diagnosed in 2010. Our best friend and neighbor (they lived behind us, about 300 feet) was diagnosed with FTD in 2011. I thought PSP was aggressive, but his disease definitely outpaced hers. As an outstanding lawyer with a large firm, he ultimately had to go on disability and retire. His behavior was very odd and became very impulsive. Would pace around the house, go up and down their stairs, take multiple showers each day, and at times would go outside and into the street naked. He also got obsessed with eating, especially with sweets, and gained a lot of weight. It wasn't too long before his wife had to put him into a nursing home with a memory care unit. He was able to feed himself for a period of time, but ultimately had to be spoon fed. He finally stopped eating and passed this past January.
Both PSP and FTD are so rare, yet here we have two people living only a few hundred feet away with these two diseases. Makes me wonder if it is environmental.
God bless you and give you strength through these difficult times.
Thank you for your reply Ketchupman. Those symptoms of your neighbour are similar but I think my F also has the motor palsy associated with PSP. He was also "higher functioning" cognitively, v high IQ. They do report that it appears to be a fast on set of the disease, FTLS or PSP, because people just tend to hide symptoms better for longer. The graph that shows the declining curve is sure getting steeper faster.
I don't know about environmental, F has worked with some nasty chemicals in the past but does have a paternal aunt who died 50 years ago of "Alzheimer's". Just don't know.
Oh I am so sorry. We 'just' have PSP but I feel your pain. Please get kids tested...well when I think of this, is this a good thing, testing? Then every physical malady will be questioned "was that from the genetic link?" your child has the hell of wondering when it will hit....Maybe it's best not to be tested.....unless of course there is a cure.
No comfort here, I too cry for you, I am sorry. well i do have these words...
AVB
The Lord is my light and my salvation; whom [what] shall I fear? The is the strength of my life; of whom (what) shall I be afraid ?
Psalm 27:1
For God has not given us a spirit of fear; but of power, and of love and of sound mind.
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