My mother has been living with Cortical Basal Degeneration for approxiametely 5 years. It is a degenerative condition and similar to Parkinsons Plus but more severe.
We have been managing her symptoms only as there is no cure for this disease. She is declining and it is getting harder to manage her. My mum is stiff all over her body.
Stem Cell Therapy seems to be her only hope. There is a clinic in California America who have accepted my mum after we filled in a form for her. We live in UK and are not sure whether this treatment will help my mother improve. We are worried that we may be wasting money as we don't know much about this clinic.
Is there anyone who can provide more information about this clinic and about Stem Cell Therapy. My mother still has some mobility and we are very desperate and are thinking of taking her to this clinic within a matter of days.
Please kindly let us know anything that would be helpful to us.
Thank you
Written by
jumanji
To view profiles and participate in discussions please or .
Interesting that you bring this up today. We live in south Texas, USA and we are leaving for San Diego, California in the morning (Saturday, April 16, 2016). My husband (68) has PSP (since 11/2015, but symptoms since 2011) and also has alot of hamstring/back leg pain. We are scheduled for stem cell injections on Tuesday, April 19th with StemGenex. We have so much hope that this will bring some pain relief and possibly improve any PSP related symptoms. We know there is no cure for PSP, but if we can get some relief from this unbearable chronic pain, then it is and was worth every penny spent! I will post outcome/results on this site. Prayers for a successful outcome.
Many thanks for your message. Your reply means so much and is very much apprecuated.
The clinic are asking for money upfront. That's why we began to think otherwise and decided that we needed to do more research. But as you can imagine this is very difficult to do whilst living in UK. They have told us the treatment will take 3 days and to book with their package which covers the treatment cost of airport transport and hotel fees.
We do not have any information about the clinic apart from where it is and that they do stem cell therapy.
I am very intersted to know how you will get on. I note that you have said you will post on here. It would give us a great deal of comfort to know of your outcome and experience at Stemgenex Clinic.
I am hoping and praying that it will be a positive result for your husband.
HI , Our Prayers and best wishes . May your spouse improve . If any other symptoms manifest after this procedure , please share it . Regards , Gaurav Saxena
Humankind - you might like to look at an interesting thread on this site a couple of months ago which started with a post by Lathom entitled 'Stem Cells'. There were some interesting and well considered replies. My own view is that there is little evidence that this treatment will work but you must of course make up your own minds and I do understand the feeling that you want to try anything to help your Mum. Hope you are able to come to a decision.
Thank you. I will certainly look up the thread. It is a very difficult decision to make as travelling with a seriously ill person so far is a huge risk. On top of this if the outcome is not good then we would be so miserably upsetting.
Lol. No problems. I had a look at the the thread that you mentioned. I am so glad that you told me about it.
There is no doubt in my mind now that it is a real place and Stem Genix does exist. Not all the comments on the thread are positive but there was enough on there for me to decide that I must at least try for my mum or else I will forever regret it.
I am hoping to book tickets for May. I can only hope and pray that it will be a successful journey for my mum.
I haven't got anything positive to advise about your decision to travel all that way with your seriously ill mum,to the company called Stem Genix, so maybe I shouldn't say it and I base my scepticism on comments that I have read from others who have made the journey with their hopes up high but if you can take her that far than why don't you take your mum on a lovely holiday instead.
Hi. A holiday with my mum would not really be a holiday. She needs full time care. CBD disease has taken away my mum's sight. It is sad that her vision is all fine but her brain does not process the picture in front of her.
There is no other hope that I can see except for Stem Cell Therapy. My mother still has ability to swallow, can control bowel movement and tell when she needs to do a wee. Her speech is still clear. Sight has gone but mobility is there with assistance.
Off course this is is also declining gradually.
In the UK Stem Cell trials are being done for MS patients and so far the improvement they have seen is that the condition has remained stable no further decline. So I felt this was positive news to go by.
However, in the UK no one is carrying out Stem Cell treatment other than trials. In other countries they are doing Stem Cell treatment not trialling.
It is still early stages but my mum does not have much time to wait.
,Myhusband also has CBD and it sounds as though his symptoms are more progressed than your mum in that there isn't a single thing that he can do for himself now, he has been wheelchair bound for a long time now with no mobility so I know what you have been going through with your mum.
What does your mum's neurologist say about Stem cell therapy?
I agree totally with Finoni.
Save your money, for the only thing you can rely on, is that these companies will only tell you what you want to hear!
Many thanks for your words of advice which I very much appreciate. Your husband is the very first person I have heard of with the same condition as my mum's. I have never joined a forum before and did so out of desperation. Off course I don't regret joining at all as there are people like you out there who do care and are in the same dreadful situation that we are in.
My mother's neorologist is a high all mighty consultant that only sees my mother once a year. He is a very good neorologist but not very resourceful. We asked him for his opinion as he does go to various conferences where new drugs and therapies are being invented. However, he said that he could not comment and it was up to us if we wanted to pursue. He told us that there are places in India and America that are offering treatment but whether it worked was something that he did not no the answer to.
He only told us about the trial on MS patients in Bristol hospital and to look it up.
If it helps your husband we have been feeding my mother some natural good things to help preserve and delay whatever brain cells she has left. We have been feeding her fermented cod liver oil. Squeezing it out of the tablet and giving it with a bit of yoghurt grapeseed extract tablets crushed as well.
My mother also lives with the family we chose not to give her to a care home. This may have helped her to remain the way she is for so long. She is 60 and we try to communicate as much as we can with her and make her laugh.
We are faced with either watching her decline further to the point where she will eventually need to have a food bag fitted into her stomach. This a terrible dilemma to be in so still searching for something before we get to this stage and that isn't very long.
I do wish your husband well. Try some natural remedies. We also have a phisio therapist encouraging my mum to help her with her joint stiffness.
My husband is also only 60, although diagnosed 2013 but had symptoms from 2010.
The neurologist that he used to see, again like your mum,only once a year, was never very forthcoming with advice and not much bedside manner. Luckily we moved and was able to transfer to a lovely lady neurologist who was so warm and caring.
My husband is very stiff, his speech is very limited .....just a word or two at times, making it very difficult to understand. He takes Pregabalin,and Clonazepam and Alfruzosin.
I am his sole carer, can't stand the thought of carers in and out all day at the moment but he does go to our local hospice once a week, which is my day off and I relish. I try not to look too far ahead and try to live each day as it comes and I try to make each day as pleasant and comfortable for him as I can.
I miss the person that he was and the things we used to do but that was then and this is now. We have lots of brilliant memories but you just have to get on with what ever is thrown our way!
The other day a friend called me stoic.I had to look the word up...it isn't the sort of word that you hear every day.......and although, yes, I realise I talk to people about my husband and his condition,seemingly without getting too emotional but that is because I have had quite a while to get used to our new normal, which does change every now and then. The emotion is just under the surface and does rise up once in a while.
I wish you lots of luck with your mum, sounds like she is in very good hands.
Den B, I really admire you for what you are doing and by yourself. Just carrying on and handling it so well. Off course it doesn't come naturally to anyone and being patient is the key . My sisters help me out with mum.
I know exactly how it is for you and it was so real when you said you miss the person your husband was. We miss mum and never get to enjoy time with our mum as we once did. So desperately want it back!
Interestingly my mother takes totally different medication. Clonazepam was given to my mum for sleep but we stopped it as she was effected for the day and appeared to be drowsy for the whole day with little speech. She has alot of nerve pain and is currently on notriptolin (excuse my spelling) which works for her pain. She also takes Sinemet 4 times a a day. It was 200gm 4 times a day which is maximum dosage for her. This has been reduced as she has been taking Sinemet for too long and was suffering from its side effects. A new muscle relaxant had been given to her along with the reduced Sinemet dosage call Tinazadine. That is her medication for CBD. Xx
I really hate to pour cold water when I don't have real information, but we were headed down that road a while back and stopped. My husband (PSP sufferer) is a physician and asked around amongst his colleagues, researchers and people in the field and was told that it is a scam.
My questions from the beginning - if it is so easy (and they make it sound that way) why isn't it mainstream? Why aren't all the big reputable centers using the method? How come this same group is operating all over the country under different names?
Of course, in this situation anything is worth a try, but before doing it I would suggest asking for statistics - and names of people with CBD who they have treated that you can talk to. If it worked wouldn't you want to share that and shout it from the rooftops?
I'm really sorry if I have burst your bubble, but it is a huge amount of money and I hate to see it go to scammers.
Thank you for your alerting message which reminded me about the reality of it again. I also questioned what you mentioned particularly if it was a scam and decided to post on here for more information.
I still have little information to go by. I will try to contact Stem Genix and ask them to give me a contact of a CBD patient. They probably won't give it to me due to data protection and privacy.
Then I saw a message of someone who travelled there and said the PSP condition didn't go away but the pain did. He also mentioned that it is to do with the different stages that you are at with the disease.
No doubt Iam still in a state of thinkin should I go or should I not.
You are probably referring to my prior post. :-). My wife and I travelled down to Del Ray Beach, Florida, which was StemGenix's 2nd location (I'm not sure if they are still doing these there or not). Their California location was their main site. Rita Alexander, their president and CEO and founder, had RA. She had travelled to Mexico years ago and received treatment. She felt so much better, she decided to form her own company in the US. They have had several success stories of people with various diseases, including Parkinson's. We were their first PSP patient. Since CBD is about as rare as PSP, I doubt if they have ever had a CBD patient before. My wife, Kim, was probably in her 5th year when she received her treatment. I really don't think it phased her disease, but maybe it did slow things down? But she was having constant leg/ankle/foot pain, due to a degenerative disc. In addition to putting her stem cells back in her via an IV in the arm and a small injection up through the the nose, they also injected some in her lower back. To date, she has not had any pain in her leg/ankle/foot since we returned. Praise God!!!! Prior to that, she was getting epidural steroid injections every 2 months and was taking a lot of medication for the pain. To me, it was worth every penny ($15,000 US) to relieve her of this pain ... And attempting to find a cure for her and possibly many others down the road. This wasn't easy money for me to come up with, but I wouldn't be able to live with myself not knowing if this was the cure.
It's a hard decision, especially when you probably have an even more expensive air fare than we did. They did pick us up at the airport in a limo, put us up in a nice hotel near the beach in Florida, and their facilities were very nice. I really do think they are a reputable company. I know the US government is about to debate whether this type of clinic should be allowed to exist. I've been receiving emails from StemGenix requesting me to contact our legislative representatives and voice my opinion. So if you're going to do this, you may need to do this right away.
I lead an Atypical Parkinson's support group in Louisville, KY. I currently only have PSP patients that attend, but have had MSA and CBD. I'm not sure which disease is worse. They're all relay bad.
My prayers are with you and your mom. May God bless you all.
Kethupman you are ever so sweet. What a kind message. Yes I was referring to your message about your wife. Please send my warm wishes to her.
What you wrote about your trip to Stem Genex is what gave me the best insight info about this place. It was a real place and you were genuine people who went there.
I am the same as you and do not want the terrible guilt of I never tried or wish I had done.
I saw that you mentioned in your post that the treatment did not Cure your wife's PSP but it did get rid of her nasty ankle and foot pain.
My mother also has alot of pain too to the point where she screams out particularly at night. She hasn't had steroid injections for it but we are managing it with a medicine called Notriptolin. If we can achieve getting rid of this pain it would still be positive for us and we would be happy that some of her pain is taken away.
It is a lot of money to consider. But even worse we are thinking about the journey and how do we get her there safely. Will she be able to cope, manage it .....
What I understood from your post is that your wife didn't get worse from the treatment as this was also another worry for us we don't want it to backfire and cause her condition to get worse.
My mother is a little unwell at the moment due to the side effect of taking Sinemet for so long. She clenched her jaw tight and would not open easily. Sine reducing Sinemet she has made some improvements. We will be bringing her home soon.
We then have to consider how to get her there. In the meantime I am getting as much info as I can before taking my mum there.
Wish you both well and once again thank you for sharing your experience at Stem Genex as this was information that is worthwhile for others out there.
There are videos on you tube you should watch I am helping my neighbor to get to his appt its called DBS deep brain stemcell. They were helpful to watch before and after surgerys
Where in California a good medical school I think is UCLA and UC Davis. But I think there are alot of "clinics" that may only know how to sever your money from you. Do your research before you let them do theirs!
Without wishing to sound too negative, I do think it is worth pointing out that the PSP Association and the NHS (in UK) and CurePSP (in USA) all state unequivocally that PSP and CBD (which as we know are closely related and often overlap) are diseases for which there is currently no treatment and no cure, although there is medication which can alleviate some of the symptoms.
Although research is going on and trials are ongoing, these organisations recognise that there is still a long way to go until a cure, or treatment to slow the disease, is found. As I understand it, and as those of us who attended the PSP day in Cambridge a few months ago had it explained to us by Dr Tim Rittman clinical research fellow at Addenbrookes Hospital, PSP and CBD cause damage to many centres in the brain and it is unlikely that in the foreseeable future stem cell treatment would be able to target more than a single damaged area of the brain, as is the case in some other neurological diseases.
Even if this type of treatment was shown to have any effect in the future, it would surely be reserved for sufferers in the very early stages of the disease and therefore with the most chance of slowing the progression.
Thanks. What you have written is very interesting. And useful info. In my mum's case we are going ahead with Stem cell treatment and can only hope for it to work
We know that there is no guarantee that it will work. Praying each day that we can get her there safely and return safely with her.
So sorry to read about your mum... A also have a mum with same CBD condition and my dad found out about stem cell treatment and just started looking and researching into it... It was great to read all the info here...
If u don't mind sharing how did everything go with her treatment would be much appreciated! hoping to hear that it helped somehow!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Impact of family death on PSP
How to talk and treat them. 
Please Help - Home care on NHS
Feeling broken hearted 
