I'm new here. Where do I start...? Help!

Discovered this site 2 days ago, wow! its fantastic. I have been on it for hours! My head is spinning with information most of which is totally new to me.

My farther was diagnosed with PSP about 6 weeks ago. Before this I had never heard of PSP so I am still learning how it will effect him. I have so many questions. Up in till 2 days ago I didn't know where to find the answers. Thanks to everyone who has been sharing their knowledge.

I would love to share with everyone, in the view of getting help, exactly what stage we are at and where to go from here... So we now know it's PSP my father has. We had been going to his local GP for a year worried about him falling over all the time. First of all it was just put down to old age (he is 65) then about 8 weeks ago we were told it could be parkinsonism. We then took him privately to Queen Square, London to see Professor Niall Quinn, who told us he had PSP. He said that there wasn't any medication for it and so suggested we went back on the NHS to see a neurologist. He wrote to our GP asking if we could be put in touch with Professor Huw Morris. 6 weeks later and we haven't heard a squeak. I phoned the GP who said that it could take up to 6 months to get an appointment through and that the appointment could be up to a years wait.

I cant sit around watching my father going downhill,l waiting for the appointment to find out where we go from here....

Please, does anyone have any advice? What should I be doing for him? I want to do all I can whilst I can. At the moment my farther is willing to give anything a try.

His symptoms are; poor speech, occasional chocking, poor balance, emotional, anxious, sagging eyelids, eyes clamping shut in evenings, breathless (may be due to anxiety) emotionless face, stiff neck.

I have been looking into the Lee Silverman voice treatment but this is as far as I have got. Would be glad if anyone has any advice on the LSVT program.

I hope this all makes sense. Thanks again for everyone's previous posts, really appreciated.

37 Replies

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  • Hi he sounds quite advanced into PSP do you remember when you first started to notice the signs and how long you think he has had this? Its terrible I know but hopefully we are all in this together on here x

  • Hi, I think definitely a couple of years. We stupidly kept putting it down to old age. He had a very active lifestyle, very hard working. So we just thought he should slow down a bit. At first I thought he must be in early stages because he can still walk and eat but the more research I do I'm beginning to think along the same lines as you... thanks very replying, so good to be able to talk to someone that is familiar with this dreadful disease.

    X

  • We did modified LSVT Big and Loud programs and they did help, although the therapists were frustrated by my guy's inability to retain instruction. constant repetition is key. He did get some balance back - for a time - and his speech has been helped, although is now fading. There is no cure, but the more functionality the patient can hold onto, the slower the decline may be, and the easier it is to live with.

  • Thank you. I think we will give LSVT big and loud a go... I'd rather do it now than live with the regrets, the 'what if's' later. X

  • exactly. The regrets can be very hard to live with.

  • Our neurologist seems to favour coconut oil as an alternative source of fat to feed the brain. Two tablespoons a day was disastrous for my man as it is a laxative too!! Revised dose was start with 1teaspoon and work up! It is an acquired taste but I have used it instead of butter or margarine. Don't think dose is important, just give brain alternative fuel. May be some research out there as have not looked.

    Other thing to add is CoQ10. I have found it helps me focus when I need to concentrate on something.

    Both have been mentioned before on this site so others may have tried them. Anything is worthwhile! And there looks likely there will be other trials out there. There now seem to be medics researching all aspects of PSP and CBD and related brain disorders so there may potentially be something to help our loved in the future. Sadly not perhaps for ours!

    With more knowledge and earlier diagnosis there may be a bigger window or opportunity for reducing effects. Do hope so! Jen

  • Thanks for this Jen. I was looking for alternatives like this. I will definitely try. :)

  • I have posted a lot about CoQ10, and you may find those discussions if you look back. Our neurologist is one of the world experts in psp, and she recommended it. Now that my guy has trouble swallowing I have ceased pushing it, but intend to go get some liquid, as I do think it may have slowed the progression. It may be just luck and a tough constitution, but he has plateaued for considerable periods, although is slipping now.

  • Neurologist was insistent coconut oil had to PURE! We are not far from the Islands so not difficult to find in supermarket by the jar.

  • Hi Khola, welcome to the site. I am sorry your father has been diagnosed with PSP but you have found the right place for help. The systems for help and support vary in different countries but it sounds as if you are in England if you have been to Queen's Square. We are in Kent and my husband has PSP (diagnosed 2013). If you are in UK I recommend that you get in touch with the PSPA (or CurePSP if in USA) as they will be able to give you lots of information. Start by looking at their website and ringing their helpline. If you or your Mum is your father's main carer you/she should look into getting the financial assistance to which she and your father are entitled, probably Attendance Allowance and Carer's Allowance, Council Tax discount etc. You should also consider getting Power of Attorney. See if your father's GP can refer him to your local hospice. In UK they are not just for end of life care and will have a range of services which will help, as well as being a good source of information about how to get support.

    As you know, there is unfortunately no cure or treatment for PSP yet but there is medication that can help with some of the symptoms and physio, speech therapy etc. is important to keep sufferers active and communicating as long as possible. Your GP or Parkinson's Nurse should be able to organise all that.

    I would also advise making plans now to make your father's living environment as suitable as possible and look into making any adaptations before the situation becomes urgent. Eventually he will probably need single storey living with wide doorways and a wet room, so plan in advance if you possibly can as it makes things less stressful to be prepared. It is also a good idea to talk to your father about what his wishes are for his future care if you can. He may not be ready to do that yet if he has been only recently diagnosed, but it is a good idea to start opening the channels of communication about this sort of thing while he is still well enough to think about it and talk to you about it, even if he doesn't yet know what he wants.

    This is a difficult time for you and your family but do keep posting and asking any questions you have. There are wonderful people on this site, both carers and sufferers, with a wealth of experience so someone will be able to point you in the right direction about most things. It usually helps just to know that others are going through the same as you.

    Vicki x

  • How frustrating to have to wait so long to see a neurologist. But there is not a whole lot they can do anyway. Parkinson's meds often work for a while, even if just to slow things down, so your GP could start him on those. OT can help with devices and adaptations to the house to make day to day life easier and safer. PT is crucial to help with balance issues. And walking (with a cane or hiking poles or a walker) is also beneficial. Prism glasses might help if he is having trouble reading. So I'd say don't worry too much about the neurologist - get the GP educated and on board with your Dad's care.

    Nearly everything I have learned or found helpful has come from this site and I am often the one informing the neurologist from things I have read here!

  • I assume as you went to UCL that you and your dad are in UK. I agree with Vicki's and finoni's comments. The things needed now are to plan ahead put in place the things to assist your dad to stay at home and to help your mum. There are 3 main areas to consider finance, care and support.

    Your dad is not old, 65 though is an important cut off age. If he is not yet 65 apply immediately for PIP care and mobility if over 65 he has to apply for the much less generous Attendance Allowance. Once he has that your mum can apply for Carers allowance. Also get Power of attorney's for finance and health as well as wills and end of life requests sorted as soon as possible while he can make his wishes known. With the diagnosis and GP referral get the OT to suggest adaptations to the home to help in care. He sounds as though a hospital bed and air mattress may be required again OT. GP needs to refer him to SALT team (speech and language therapy) they will assist in not only speech but swallow issues. Also a neurology physiotherapist for exercises. Contact local social services for assistance and reduction in council tax once adaptations completed.

    If you dad and mum had plans for some special holiday or event encourage them to do it now before PSP really takes hold, they will provide good memories for later.

    If possible start looking at nursing homes not for now but for future, not to pick one but to remove from the list ones you do not like.

    Keep reading this site show it to your mum and dad as well as it shows they are not alone. Be aware PSP is not the same for anyone, it progresses at different rates and with some symptoms more quickly than others, but it does progress in one way with few remissions. Be prepared for a hard road your mum will need a lot of support to care for your dad. From experience get her to take time out regularly and to keep some social contact and not be afraid to ask for help from the professionals I wish had done this earlier.

    Good luck Tim

  • The only thing to treat with is anti oxidants.

    Coq10, alpha lipoic acid, glutathione, vitamin c, astaxanthin, resveratrol oligmers, macha powder, neem powder, sodium bicarbonate.

    Strong fish oils, curcumin extract, And even then you probably won't notice any difference.

    I get most of ours from pureclinica they have bulk deals and are on Amazon.

    Also check out ethnomedicine.com, they are the only ppl on the planet to replicate plaques and tangles in the lab. It's the same guy in charge who found the treatment for hiv in tree bark that has saved many lives.

    In Guam a significant portion of the population dies from parkinsonisms. The army docs were sent in to find the cause and failed. Then years later this guy, dr Paul Alan Cox, had a go and made a discovery.

    The local delicacy was flying fox, the fox diet consisted of Ciad seeds, the Ciad trees all had their root in pools. The pools all had Cyanobacteria (blue/green algae)

    The algae was found to produce a toxin called BMAA. BMAA gets bio magnified up the food chain. The highest concentrations were found in oysters/clams etc

    All the samples they got from Parkinsons/Alzheimers ppl tested positive for BMAA. A woman with Psp who had passed several years earlier had kept hair clippings that they tested and found to be positive for BMAA. The have also linked this toxin to other degenerative diseases.

    12/12 lakes/lochs/reservoirs in the uk tested positive for BMAA.

    BMAA is similar in structure to the amino acid serine. It is thought that as some ppl age their body stops producing serine and as the BMAA is similar it can sneak into the amino acid chains as they form. The serine is used in the manufacture of membranes. So for Ad/PD/Psp the membrane coating the brain is compromised. With ALS the membranes coating the muscles are compromised.

    They are at phase 2 of the safety trials using ALS patients but there is no evidence that this treatment will work yet.

    Serine is available at most supplement stores and as such big pharma has no interest in this line of research as they wont make billions off the backs of sick and dying ppl.

    If it does work we think the treatment will involve serine and zinc due to BMAA being a chelator of zinc. But too much zinc is also bad for the brain.

    Google serine trials to see all the trials.

    In my opinion this may be only one way to catch this awful disease.

    At the very least it gives us an idea of how this happens.

    We have since bought genetic testing kits from 23andMe.com to see what markers we all have. We are awaiting results.

    Good luck.

  • What can I say , "wow!" .....Islanders, well Guam, I think? have been eating a specific fruit which scientists have found leads to PSP....there was a higher population of ppl there w PSP.....was it Horseapple as its known in the states....at any rate UK and US doesn't eat it.... But this is all very interesting about the algae thing. Is your dad taking Serine do you see a difference. Big pharma.... they'll kill you if it's profitable.....

    How are you able to read the markers.....Does 23andMe give you explain your genetic code or do you then have to take it somewhere!

    You are very into this Mindoverpsp! Thank you

    AVB

  • He takes 300mg a day. No noticeable effect but how do you tell anyway? Idk. It's difficult to get him to add more pills to his regime.

    I saw a vid posted recently on YouTube of a guy with ALS saying he takes 30 grams of serine a day and that his last 2 lung capacity tests have shown no change when normally with ALS it's a steady decline. That's the only evidence I have seen and it's not exactly concrete.

    I'll get back to you on the 23andMe info, not sure myself yet.

  • Please come back and tell us when you know - thanks.

  • I checked my dad and mums 23andMe account today, it says that neither of them have the genetic markers for Alzheimers, parkinsons or breast cancer. It's explains it all for you. My mum says she doesn't think the test is accurate. But science...

    Next step is to let them know he has Psp and see what happens. I'll ask about serine production and see what they say. If they can locate that gene it may give us some insight.

    ✌️

  • So you can have an ongoing conversation with 23and me about the findings?

  • At any rate it is kinda cool to see something good in those markers, ie alz park,and BC. However I do have to question the Parkinsons finding, since PSP is Parkinsons ugly cousin , would not Parkinsonism...show up or is that too much of a nuance to see in a basic gene read.....

    An aside, What I dont get is how the genes read your nationality.....well whethter your Irish or Italian I mean some things like more melanin in the skin, ok. but how many peoples have more melanin than a white person.....?

    I'm just showin my ignorance again!

    AVB

  • There were 3 racial types European, African and Asian. That's what we were thinking about the parkinsons one too, this would put us closer to an environmental cause.

    I don't know if we can have an ongoing convo, but considering the Psp I would have thought we could be quite useful to them.

  • Indeed! You would think there's a lot of undergrads studying something , hoping to find some sort of anomaly for their genetic thesis etc....or researchers....do they ask if they find strange things if they can use findings for research?

    Well let me tell you something about DNA....

    Though I haven't been tested perse, No one in my family has Epilepsy nor have I ever had a traumatic brain injury...not even a concussion. However I have had seizures since I was 21.

    I was at the office sat down and bam 6 to 8 hours later I woke up where they told me I had had a grand mal. And have had one almost every month since then. I am now 55!

    So heridity or environment or the unlucky draw of the lot......

    For my husband no one has even had Parkinsons. He's never been to Indonesia or wherever those fruits were eaten or the algae.

    The only thing I can think environmentally is....insectide....We used to have ants and every summer I would hire pest control to come out. Never happy with any one I have hired several (one per summer) businesses. One business said they used the big guns for the ants. and indeed it did the trick....ants never really returned....I always wondered...what did they useI can't remember who they are though.....

    so environment heredity or nasty luck......

    Doesn't mean theres not a cure out there tho

    Whew...too long of post sorry

    AVB

  • This toxin BMAA is everywhere, it's probably in everyone's water. Its even in the desert in amongst the sand in Iraq.

  • Ironically they are talking about blue green algae in the news tonight!

    Due to our warm winter and humid etc there's been an influx of it in lakes and other waters....They've actually had to close down beaches and other waterways. There is a dam that they opened due to excessive rain. Upon further invesitigation they shut the dam up due to heavy algae leeching into the waters below....now everyone down river has been polluted...more than ususal, that is...Now theres a good study....was there enough bloom to cause immediate public harm AND what are , if any, the long term implications of the opened dam ie higher incidence of PSP, ALS Parkinsons etc.

    AVB

  • Which type of Serine are you referring to? There is a D-Serine and L-Serine. I was so intrigued by your post that I went online and ordered both. Supposed to arrive tomorrow. My wife is in her 7th or 8th year of PSP, so I'm willing to try anything at this point.

    Ketchupman

  • L-serine, but I did find an older trial for d-serine on PD that showed minor improvements.

  • Thanks! I may try both.

  • This is the d-serine on parkinsons study.

    ncbi.nlm.nih.gov/pubmed/217...

    Here is the article on BMAA in British lakes etc.

    dailymail.co.uk/news/articl...

    And here's the link to the l-serine on ALS study.

    clinicaltrials.gov/ct2/show...

  • Yikes! We have a lakehouse on a nearby lake in Kentucky and often it has excess algae. I sure hope she didn't get PSP from swimming in the lake.

  • I was just saying that to MindOver that US has had an unusually large growth of it this year. I was wondering of algae growths long term implications......

    I don't get it tho. If BMMA is a neurotoxin , why is it that we want to take Serine which is like BMAA?

    AVB...Ill listen to the videos...tomorrow,,,its 12:30 am im tired

    AVB

  • Thanks for all the info and the links

  • This post is soo good I sent it on to my Sister in law she will be thrilled to have so many different health leads.

    I will be reading too.

    Thanks

  • Welcome to the club/site. I wish it were under better circumstances. This coming July will be 3 years since I was diagnosed with PSP. Like you, and so many others including health care professionals... my wife and I had never heard of PSP. Someone mentioned in a previous post about functionality and slowing down the disease's progression... absolutely correct. There are a number of on line groups... all very informative. I would recommend the CurePSP.org site. It gives you information on research, clinical trials etc. Hold on to your seat, this ride called PSP can be very bumpy with lots of hills, curves and dead ends.

  • You have had lots of really informative replies and I can't add much more. Don't fret too much about waiting to see the neurologist. My husband's was sympathetic but after the 3rd six monthly visit he suggested we didn't bother to go and see him anymore as it was an effort getting my husband there, the PSP was progressing the way it does and he said he couldn't do anything for him.

    I'm sorry you had to join this site but pleased you found it.

    Best wishes.

    Nanna B

    X

  • We went for a follow up with our Neurologist , top dog in UBC hospital in Vancouver BC. We were told no treatment available and Q-10 was a waste of our money . He gave my husband hand a little shake and said good luck sir.Two and half hours waste of time just driving one way. You do feel helpless. Get good support for your mom and do get all your ducks in a row. Get that special trip or anything else your Dad has put off . PSP sneaks up pretty quickly. Your Dads a lucky guy to have you looking out for him and your mom

    Good luck to you Khola

    Deidre in BC

  • Welcome.

    Agree with all above. We still see our neurologist every 6 months but he can't actually offer anything except empathy.

    Focus on making the most of your father whilst he can respond. Make memories.

    For me and most others the loss of interaction and communication is hardest to bear.

    Your mother needs support to help her with this and to continue keeping her own identity by having time for herself. It is too easy to be lost in PSP.

    Keep reading here.

    Its a real roller coaster.

    Love, Jean x

  • I found the speech therapist excellent, they are local, get your GP to refer or ask for tel no and ring direct, choking is a big worry with PSP and CBD, I have to feed my man now and find a teaspoon good as it limits the amount, the time taken swallowing seems longer, I avoid hard food like crisps crackers nuts, and red meat, I have a thickening agent she recommended and it just makes the drinks easier to swallow and less choking now, also the Parkinson nurse should be an early port of call, as she is so knowledgeable in all areas of this awful disease

    Good luck, and keep pestering all the services until you get the support

    Jd

  • Hi

    As others have said - Welcome - Sorry you need to be here.

    Strongly agreeing with vlh444 and Amilazy (though the other posts are full of great advice too - just these two posts cover a lot of the practical bases very well IMO.

    Esp. if under 65 get that PIP application in. Do it over the phone 0800 917 2222. It is deemed to start from the day you made the phone call. Or telephone for the forms. Again it is deemed to have started on the day of the phone call and the forms arrive stamped with that date.

    Adding ask for a referral to Continuing Health Care from your G.P. They will make the referral. This will give you free access to home care services, hospital beds, stair lifts,

    Things like wheel chairs walkers and commodes come via social services ask the G.P to make a referral for an Occupational Therapist Assessment too.

    PSP can be very expensive.

    Start a notebook, contacts list or whatever with all of the names of those with whom you are involved their role and contact details. This will become invaluable as the list will grow exponentially!

    Hydrotherapy is good later on, when balance is too poor for easy exercise and movement.

    Some sort of leg exercise machine (we use an exercise bike) is good when wheelchair bound. Needs to be a big heavy stable one. It stops a lot of the leg twitching associated with unused muscles.

    Finally make sure you get breaks and time off - Carers to sit in whilst you have an afternoon off - hopefully paid for by Cont. Health Care. I got to almost breaking before I realised how tough it can be.

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