New to it all

[Baxter6]

Recently, last few months, a neuro specialist has told my wife Yvonne that, having spoken to her and watched her and seen 3 scans, he is "as certain as he can be" that she has PSP. Maybe she does, maybe not? 50 years of hairdressing and she is left handed. Every two weeks, there is tremoring to the left hand and arm. Then it goes. Left arm is weaker and she cannot always control what she is doing. Speech is slurred sometimes but not all the time. Balance seems to be main problem. Fine walking with me, hand in hand, strong and can walk miles. Tends to look at ground when alone for fear of falling. Age is 69. Putting it out there as she would like to make contact with people, thanks very much. Martin (husband)

[Kelmisty]

Hi, my Mum was diagnosed at 69 with PSP and CBD, she’s now 71.

She’s sounds very similar to my Mums symptoms before she took a turn for the worst and eventually got diagnosed. I won’t lie it’s a rough ride, but everyone here understands.

Have you been in touch with the PSPA Charity for their guidance and support yet? If not, I recommend you do.

x

[Sun-flowerwearer]

Hi Martin

Please look up PSPA on the internet. It is the UK charity looking after PSP/CBD. It is a brilliant organisation. There is an excellent help line for every region in the UK providing support from a dedicated very caring person. You can ring for advice or support. The PSpA also run monthly zoom meetings, one for Yvonne as a person newly diagnosed and one for yourself as a carer .. these are really great groups that bring together people to share your experiences and meet other in your area. They usually start with a useful topic presentation then open it up to chat. There are also in person group meet ups in some areas. The PSPA runs exercise classes over zoom too. It has heaps of valuable information to access. That’s a great way to access fellow sufferers.

[Postie7]

Morning Martin, agree 100 per cent with the other replies you have had. In 4 years of caring for a relative with PSP the most valuable interaction I have had was a telephone call with PSPA. She knew and told me so much information that had never been relayed by a consultant. In fact my relative has had no appointment with a consultant since March last year when a definitive diagnosis was given, There is no shying away from the fact that this is a most cruel disease with unpredictable turns for every patient as it depends on where the tau proteins are congregating in the brain that governs the symptoms .

You take care .

[LuisRodicioRodicio]

Hi Baxter6!

I agree wiyh Kelmisty and Sun-flowerwearer. PSPA is a great help.

These little particular notes may serve as a guide:

My wife was diagnosed with PSP-RS in 2015. Before to be diagnosed the first symptoms showed up in March 2012 as: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger. It is worth highlighting a reduction in the size of her writing and worse structure of the letters as well as greater difficulty in keeping up with a walk at normal speed (3 to 4 km / h) from March 2010. During the period 12 to 15 years before the first symptom falls were relatively frequent: around 10 occasions, two of them serious and many inexplicable.

The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis). DATscan between 2012 and 2015 did NOT confirm the suspicions about PD, PSP-RS, PSP-P, PSP-CBD, etc.

If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS (Richarson-Steele-Olszewski), PSP-CBD, PSP-P, MSA, etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

A diet program based on the Mediterranean diet is also recommended.

Hug and luck.

Luis