positive thoughts

[ChocolateFaceTeddy]

can I ask if anyone ever has a positive day where they feel better than usual I seem to hear such terrible stories and wanted to hear any positive news from anyone please xx

[AliBee1]

Hi. Yes you can have positive times especially at the beginning when you have to try to do as many nice things as you can. As the disease progresses you might not necessarily get a whole day but parts of a day and you hang on to those moments. I remember my 70th where my husband was at the end of a table in his wheelchair and holding court even though his speech was not that brilliant and even though he had to be fed but he was so very happy and it was lovely. The other lovely memory which I captured on camera when we visited a childrens farm and he had this tiny chick in his arm. That is the photo I now have by my TV as it makes me smile. Big hugs Ali Bee.

x

[ChocolateFaceTeddy in reply to AliBee1]

thank you so much it has brightened my day you cherish those times don’t xx

[Richard33]

ChocolateFaceTeddy (great name!),

My wife aged 63 has CbD. It has now progressed but she still has good times laughing with the family. Key to it has been that from the beginning when she was diagnosed in 2016 she went onto anti-depressants (Sertraline but there are many others). No side effects and no worries about addiction under the circumstances. She decided there is no point being depressed and having a no-good brain disease. We have had lots of good times - see my earlier posts. You just have to get on with life and seize the moment!

Big hugs from Sussex

Richard

[ChocolateFaceTeddy in reply to Richard33]

thanks Richard I agree with you I remain positive taking each day as it comes, so your wife has CBD for 7 years, does she still take sertraline I was on that medication but switched to mertazpane now suits me.

[Richard33 in reply to ChocolateFaceTeddy]

ChocolateFaceTeddy,

Ruth now takes 200mg of Sertraline in the morning. I think she started on 50mg, but over the past few years when she starts to feel it is not working generally and she is starting to feel a bit low, she has asked to increase the dose. She also takes 15mg Mirtazapine at night which helps her sleep (we tried everything some years ago when she was not sleeping and this is the only one that helped in the longer term). She actually found an increase to 30mg was less effective for helping her sleep and the doctor confirmed this could be the case. But I think it is a case of trying what works for you.

So don't let yourself get sad (drink gin if that what works!!!) and take that holiday / trip now - don't delay - and hopefully you will have many good years ahead.....

Richard x

[LuisRodicioRodicio]

Hi "ChocolateFaceTeddy"!

This is a chat where the different problems that can appear in the care of patients with PSP "land". It is not a good place to relax and be distracted by pleasant situations, although I remember that "Bazooka 111" and "daddyt", among others, have provided stimulating and funny moments.

And yes, with due precautions and help from other caregivers it is possible to enjoy situations, excursions and even stays in summer resorts on the coast.

In our case, within the period marked by the disease we traveled to Malta and Germany, we spent up to 5 winter-spring in Malaga as well as numerous family gatherings and parties.

Yes!!, we can do!!

Hug and luck.

Luis

[ChocolateFaceTeddy in reply to LuisRodicioRodicio]

thanks for your reply I feel that anything’s possible to a certain degree but love the support and advice that I get from this forum i myself have CBD not PSP.

[lilot]

Hi you, Dad's journey was a roller coaster over the 10 years after being diagnosed with cbd. He was an intellectual man that held his thoughts close to his chest, silence was one of our obstructions going forward. Another issue was his short temper and at times cruel back talk, this was impart natural and not brought on by his medical diagnosis. but would soon become trying as this disease progressed. To cut a long story short, and there are many of them! we had wonderful times and sad, Dad even when he was unable to physical address himself was mischievous, witty, such a laugh. He may have lost his dignity but lived life to the full as best as. It's those too around being normal that also matters. CBD may look as no one is home but let me say that a super computer is functioning. Ups and downs but many ups.

Dad 7 years in with CBD and still laughing

[ChocolateFaceTeddy in reply to lilot]

thank you so much I just wanted to know if there are any positive aspects at all, I hold out hope for a cure I myself are going to London for clinical trials and I try to be positive but it’s hard sometimes especially as try not to be a burden to my family who are very dear to me xx

[ChocolateFaceTeddy in reply to lilot]

I should have said lovely photo of your Father too xx

[lilot]

Hi you, Please don't think of yourself as a burden! I felt the door had been closed on me when Dad pulled away, if you are close to your family or best friend it's only natural for them to be right in your sole. I would like to be here to chat with you when you fancy. Off the cuff or on it! It is a long journey so get stuck into life and do the things that stimulate you. Sure you have to have tests and things but for the next few years you are the master of your own ship. Steven X

[ChocolateFaceTeddy in reply to lilot]

thanks for your honest reply sometimes we all need to be captains of own destiny I’m going to adopt that from now on but knowing my limitations thanks Steve xx