but now all his fingers, apart from his thumb and index finger, are affected and he cannot use his right hand.
He is right handed and has had to learn to use his left hand, it makes things very difficult for him because he cannot grip anything at all with his right hand
Has anyone else experienced this and has anyone got any suggestions as to what we can do self-help wise?
thanks, as always.
dorothy-thompson
Hand and Foot Dystonia (common in Parkinson's) occurs in about 50% of atypical Parkinson sufferers (in PSP and more in CBD). It rarely occurs in the early stages and is often treated with some success by Botox injections.
Cheers.
Just an added note that the medication of L Dopa (often used by PSP sufferers) can cause some dystonia as a side effect.
Hi Dorothy,
My husband has the same problem but in his left hand initially and now his right hand is starting to be affected.
For some time he had physiotherapy, but it made very little difference. His neurologist offered him Botox but he refused to have it. Unfortunately there is little he can do for himself now.
Not a particularly helpful answer, sorry.
Best wishes.
Peter3.
Dear Dorothy Thompson,
My husband started with problems with his right shoulder (In many respects we both hoped it was doe to a broken collarbone John had as a child) - but then it progressed to John unable to raise his arm fully, then reach out, then reduced to partial use of his right hand with thumb and one and sometimes two fingers in use.
Day-to-day living changes have gradually been made with the exception of toothbrush/dentist - which became immediate when evident.
New crockery was added for general use - picked up some dinner plates with curved sides and some pasta type bowls. For cutlery John found steak knives, sometimes spade forks easier to use, and at times just a soupspoon (hence food prepared was altered to accommodate).
John also found the small plastic squeezable 'picnic' sized salt and pepper shakers easy to use.
We had a bidet fitted over the toilet (some thing I was hesitant with but John welcomed!). We also had hand rails fitted in the bathroom and one near the main entrance outside, and one to use getting in and out of the swimming pool.(I personally wish we had taken the thing out but heh that's another story!) Before the handrail was placed outside the door, John was badly grazing the top of his hands on the brickwork, which he was not feeling (Or did not seem to notice?). He was trying to hold or lean onto the brickwork whilst using the key with the other hand.
We also had the bathroom washbasin replaced with a wall mounted version so John could sit in a shower chair whilst brushing his teeth and shaving.
John has developed a low pain threshold –
This did not become evident until one tooth pretty much disintegrated to nothing. John could not sleep; felt as if he was hurting but we could not isolate his pain. This went on for several days (GP and neurologist were away - bad timing) When I assisted John with brushing his teeth (which I did not normally do) it was then noticed so we sort emergency treatment (& found out it was close to Easter and traditionally is allied medical 'holiday' season!) John was refused treatment by the State Dental Health Service because John had a neurological condition (we later received a letter of apology). His tooth was removed two days later (interim 24 hr pharmacy medication suggested by Dental health caused further delay) The tooth was removed by a local understanding dentist who went the ‘extra’ mile in John's care and even printed off the some details about PSP from PSP Aust web-site to put on his file for later reference if required.
Up to that point John’s teeth were in excellent condition, but there is now noticeable deterioration so John now has six monthly checks (In our case the past days of regular 12 monthly checks were not enough). The visit to the dentist also prompted us to buy John an electric toothbrush with a timer & John welcomed this. (N.B. It was cheaper to buy through the dentist than supermarket - an Oral B product and the dental therapist gave John lessons!) I've since given recommended this dentist to others and received very favourable reports back.
John clothing has now altered - he now wears generous sized shirts that can be slipped over instead of buttoning them up, or a T-shirt, and he has given trousers that have a zip or require a belt a miss- and prefers elastic waisted pants. He also prefers fleecy jackets rather than jumpers or windcheaters. There are some trendy surf clothes around, so it is probably a look he could have gone with a lot sooner.
John was also finding shaving difficult & did not fully trust others. So he thought why grow a well-manicured moustache and beard. I purchased a small electric trimmer for John to use that he still handles well most of the time and a carer and/or the local barber brings it all into shape (I used to do the task til recently).
Shoelaces were a task and quickly became impossible for John to tie. A boot maker initially altered shoes but fortunately, John now has lightweight shoes, with two Velcro tabs, well cushioned, with a flat smooth sole that a local bookmaker recently started importing from America (& at a much better price too!).
We also picked a couple of things for John to get in and out the car easier - a cushion that swivelled and a handgrip that fitted over the door lock latch.
And John also changed his dining chair to one with arms - gave John extra stability not only when getting in and out of the chair but also to rest his arms and readjust his seating during the meals.
Our daughter needed some stationery items for school, which John also used. I used to leave extras on the dining table – pencils with pencil grips (She is both left-handed & right-handed so we had both types), ruler with a centre grip, and thick colouring pencils. John would automatically use these for crosswords and I think he found them easier to handle than ‘typical’ stationery.
Hope these ideas assist.
Regards,
Alana – Western Australia
hi alana i see by your letter that you have had a bidet installed could you give me some information on it please only we were thinking along these lines a while back but did no know of anyone that had fitted to find out whether they were ok or not \\\ we had rails put in the toilet and bathroom to make my life easier \ do you have to have a power point installed in the toilet for the bidet or anything special installed \\ regards to john and thank you in advance for any information you can give me \\peterjones queensloand australia psp sufferer
Dear John,
I am seeing John on the weekend and will get details then, and send on. (Can't recall make/model etc)
In the interim - Yes, you do need a powerpoint in the toilet area. We had one fitted when other electrical work was being done. The existing toilet seat is removed as the bidet has a toilet seat included in the whole set up.
Regards,
Alana
Dear Peter,
Was having a blonde moment earlier! Now recall the details... And found a web site. The item was purchased the Coway BA08 bidet through 'Daily Living Products' (DLP). daily.com.au/index.php/bide...
We went for this version so the controls could be seen and mounted on the wall to use. It appears you need to use many buttons, but in reality, John uses just two buttons. When we purchased the item, we paid extra for installation and the owner’s son of 'DLP' set up the bidet in our home. I thought it would be difficult, but as it turned when it came to move it when John went to live with his mother) it was straightforward - I did it - but do not ask me to remember how!
Yes, the bidet unit we selected - it is pricey (more than my cars worth!) so we asked lots and lots of questions and viewed others before going ahead. (Mind you, it turned out we did not have to pay for it - more below...) We viewed other types stocked through other companies - and strangely some did not seem to be built strong enough to sit on!(One sales rep even rocked up at home and showed us how many broken ones he had in his car!).
A Coway bidet is also placed in a 'public' disabled toilet at the Arthritis Foundation for people to try 'before you buy - placed and cleaned courtesy of 'Daily Living Products'. So, yes we did and yes we laughed about it - for I had never sat on a intentionally warmed toilet seat before and been sprayed with water and then warm fan dried so it sort of freaked me out!
To me Daily Living Products looks like a big business when you view the website - but in reality, it is a small owner operator business that has been going for quite a while. We found the owner and son and three female employees all to be a upfront honest sort of guys - a rarity it seems when you talk about 'disabled' products.
When we visited their premises (they have two in Perth), both were crammed full of equipment going in and out of the door & we overheard several calls including enquiries and orders from interstate customers (Received several whilst we were there - we have visited quite a few times). Their shops are retail - but act more like a cross between a local shop and warehouse. (Reminded me of the days working in a printing factory).
I just looked at the video on the web site and I notice they now have one that does not need electricity so maybe that is one to look at...
(The reason we did not have to pay for item is that - I applied for a State Govt grant through the Independent Living Centre WA. It came through for us at the very last moment - the day we placed the order, so in that, instance luck was on our side and we've had the similar fortune for some other things. (And used old work know how knowledge to play the govt game to get...- sometimes it is about knowing the system..) It took so long to get (a year - as probably expected) but the hurdle we had was that we had no one else with John's condition who used similar equipment to use a example to justify benefit - so if you are eligible for, or have enquired about grants - that is if they do exist in your state - and need any sort of reference/validation just give the word and I will certainly make calls/letters/call on contacts etc on your behalf...)
The stories I can tell my grandchildren (one day)
Our bidet was the first real disabled purchase that opened our eyes to how many shonky sales people there are in the disabled industry. We've had some dubious characters visit and phone our home to demonstrate bidets, chairs, beds, gophers and the like- and it has placed me on guard ever since. For example for bidet sales - A man & woman together drove up and set up one on our front patio (rather than bring it inside and ignored our request to bring it in inside deliberately!) and used it as a scare - sales tactic to get us to sign a contract to buy! Then followed through with mail to suggest John had already committed to the purchase...So the standing joke for us now is - Where did the second hand car/real-estate/tow truck driver/cigarette salesmen go? They took a job as a...
There were a couple of things I didn't get used to with the bidet...
1. Now promise me not to laugh... there is an on/off located on the remote which John always leaves on. So when I got up to go whilst half asleep and sat on the warmed seat (and didn't turn the switch off)-- It would always scare the living .... out of me - For it has a self cleaning action that spray water in the bowl when you first sit on the seat. So for almost every morning about 3.00am I would sit down, jump up and yell out - shit, and think not again! (And I am not even blonde!)
2. I never felt comfortable using it as a bidet and used it just to sit on like any normal seat - because I always viewed as a personal hygiene item for John only. Even though it is promoted as an item for all to use.
3. I just prefer soft toilet paper. Even though I've spent a bit of time in parts of the world where it is not used and have Somalli friends who have been brought to use none at all. (use Left hand and water instead)
4. Because it is a gadget on the toilet I found it time consuming to clean. I used to be a person who used to use bleach and a scrubbing brush in the bathrooom and they are products you can not use around a bidet so it took a bit of readjustment to use soap and water, sprays and sponges and disinfectant instead.
But I do know the bidet has proven to be a piece of equipment that has helped John maintain his independence and continue with an excellent level of personal hygiene.
N.B. Should get a job working for Choice magazine?
Regards,
Alana - Western Australia
hi alana thanks for all your helpful information on the bidet for me i will now look into it very carefully indeed i expect there are shonky salesmen all over the place mate although you would not think there were any dealing with disabled but there again i suppose they would have as good market they seem o prey on the elderly and being disabled as well gives them a double edge they are mongrels \\ now i promise not to laugh but i could not help a chuckle when you said you got on the bidet at 3 am \\ of course i will not be going to somallia for quite a while for obvious reasons well mate thanks once again for the information oh just one thing before i go i used to call my wife the bleach queen i used tp have some colourful shirts that were got at by the bleach queen and a mile of socks and other things as well thats life i guess \\take care in WA regards to john \\thats quite alright calling me john i get called all sorts of names mate\\ peter jones QLD AUSTRALIIA PSP SUFFERER
Alana
There's definitely " a book" in your experiences. Let me know when it's published!
Thanks for all your good practical advice!
Dear Peter,
Forgot to add -
John's had the bidet for two years now with no problems at all.
I am pretty sure we received a discount at the time we asked for a written quote. And I do recall that we asked for the owner to drop the price again even further but he wouldn't budge second time.- Can't help but ask!!)
I can't find the quote - if I had it - i'd let you know how much it cost - but if want you are welcome you give them John's name - John Frederick Bean from Kewdale WA and see if they have details or use any of these transcripts to see if you can the price dropped lower than listed on the website!
When we first went to Daily Living Centre I do remember going...- Whoa --- How much $ did you say it cost and the owner retold us - so John asked why he didn't sell other products tht cost a lot less. The owner agreed immediately that there are others which do cost less, but Coway is the only one that he felt doesn't have problems and breakages and he did not want to get a reputation for selling dodgy products, and didn't have or want to make the time sorting out items that needed to be fixed.
Having said that I've come across some advertised in health magazines and even being sold Japanese Oriental supermarkets (of all places!) when I've travelled around Australia that are 1/3 the price of the one John obtained
They look well built and are advertised as made in Japan. So I imagine you can probably get a better price and range than we get here in the wild, wild, west...
Regards,
Alana - Western Australia
N.B. Just noticed I called you John, on the first email I sent for the night. Sorry -
My. Husband can't open his fingers on both hands started in the right hand about 3months ago now his left is affected dr doesn't think Botox would help he has increased his baclofen to 20mg to three times a day has helped a little I also put a rolled up flannel in each hand it's hard to cut his nails but can just about manage it hope this helps
Lynne
Unfortunately I think this is a part of not only PSP but other brain disorders. My first wife died of CJD another PSP like disease. At times if she had hold of something she couldn't seem to let go. Her fingers would hold a thing tight.
Jimbo
Hi Dorthy, everyone has mentioned most things, but i noticed hubby rarely complained of his arm or the tight grasp with hand or fingers, we have not been advised of any Med's but with his insomnia he has now got some light sleeping Med's and they have done wonders for his arm as muscle relaxants. Please talk to your Gp and get some Med's for relaxing the arm and helping with sleep if he has that problem, also the nurse suggested 10mls liquid panamax( panadol) morning and night for the pain we don't know of. Good luck 
hi everyone just one thing i would like to add if your having trouble with laces in your shoes i found that you can get elastic shoe laces which were good for me instead of tying them in a bow you just give them a tug and they tighten up i think its the second best thing to velcro hope this helps in some small way peter jones queensland australia psp sufferer
thank you to all the suggestions - apologies for not replying before - something wrong with my email as I did not get these replies until today.
dorothy-thompson
Hi Dorothy,
I hope your husband in time manages to adjust to the change of using his left hand. My friend that I care for (who has PSP) started with his right hand fingers starting to curl in and they would just stay that way. His hand and wrist also curls in now so that he has to use his left hand for eating and drinking etc. But more recently with the last few months his right leg has now become weak also, so that he can't seem to put his foot where he wants to put it (almost like the leg has a mind of its own). It seems to be that his whole right side is weak and he can't control it at all. Because of this my friend has a tendency to lean excessively to the right and is not able to prop himself up on his own. So I pop a cushion under the right arm to help keep him upright. We use a Sara Steady mobility aid to transfer him from the bedroom to the living room and vice versa, but we (me and my friend's wife) always have to place his right foot in the proper position for him so that he can keep his balance while in transit. Having good sturdy shoes on also helps. My friend has never been offered steroids to help with any of this, so I was quite interested to read the previous comments.
CBD
Feeling useless 
Speed of deteration
