Quick background information: My husband is 68 and was diagnosed with PSP November 2015, but PD diagnoses since Spring 2012. He has alot of right leg pain (leg-hamstring/groin area). Unbearable and pain is at level 10 every day! Miserable! We have been waiting for this day for a few months now. After extensive research we finally decided on STEMGENEX in Del Mar, California. Yesterday (Monday, 4/18/2016) we did our pre-op and today (4/19/2016) we did the procedure. They harvested his stem cells from his stomach area (liposuction), cleaned them and injected stem cells through his nasal cavity (both nostrils) into brain area, though an IV so that it would travel through his entire body and then to the leg area where the pain exist. It was about a 4 hour procedure from start to finish. We know this won't cure PSP, but we need pain relief so if this can help with that and possibly other issues, then we will consider it a success. We won't see changes for about 6-12 months. I was so impressed with the professionalism of STEMGENEX. There were patients from all over the world here today. No one with PSP, but there were MSA and PD patients. Using your own stem cells to heal yourself--that would be a miracle! I HOPE, HOPE, HOPE that this will at least help him with pain. Wanted to share our experience with all of you. Keep you all posted.
NSH
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Hope it works for him. Spoke to a Dtr here in Fl and he said stem cell research is not showing any improvement for PSP. My hubby is not in any pain but was so hoping that something positive was in the works for all of them.. He said nothing new. Please keep us posted.
I hope we have some pain relief soon. I met two men with PD yesterday and both had stem cells in Europe about 8 years ago. They both said it brought them so much relief with PD related issues (vision, memory, tremor and stiffness). They were now at STEMGENEX trying another round of injections and they know that the stem cells made a difference in the quality of life for them. I know PSP is different, but if it can make a little improvement in the quality of life for my guy, then we will take it. I don't know if it will work, but if it does work or does not work, I will share it with all of my PSP friends. They are emailing me a recovery plan (supplements/vitamins/nutrition plan) and I will share that with you all too. They mentioned following a Paleo diet and/or The Makers Diet. Whole natural foods. No canned, bottled, processed, packaged, etc. I am willing to try it all.
I am so trying Nikkie but he is acting so strangely now. Insisted on taking his jeans off, now he just said I feel more comfortable. I never know what to expect next from him. I am exhausted, supposed to take him to the eye Doc tomorrow but I feel very weak myself and am afraid to drive quite truthfully. If I can't get myself stronger don't know what I will do
If you feel weak you should not drive. Is there someone else that can drive you? Maybe a taxi? They can act so strange sometimes. Like the other day, my guy was tired of chewing his gum and so he was looking for a place to stick it--under a chair!! Ugh! He would have never, never done something like that but now it seemed as if he just doesn't care what people think or what is right or wrong. Very strange behavior at times. Do you have anyone helping you? I am going to check out the link you posted earlier on the clinical. I found something in Dallas Texas but I think it is in June 2016. I need to go back and track it down. Keep you posted. Please hang in there but take care of yourself too. Huge hug, Nikkie
I have no one but an aide who comes in 3 times a week for 2 hours each time. My daughter will go food shopping for me but not happy doing it. Her husband just today told me to put him in an ACLF. I am horrified and want to just sit down and cry. He is getting weaker every day. Call the place in Dallas, you should have a number on the site. They called me back today from Fl. and they want to see my hubby but truthfully I don't think he will qualify because of his age and other health issues. They are starting new clinical trials shortly. Have no one who can drive me anywhere. Taxi, have to make some calls. They are expensive.
Your situation makes me sad. Is there any way someone else can sit with your hubby for a few extra hours a week?
The Florida group was quick to respond to you. We arrived home in Texas about an hour ago. There is no place like home!! So glad we made that trip to San Diego while my hubby can still tolerate it. It wasn't easy. Believe it or not, he did not go to the restroom once from San Diego to Houston--that was AMAZING! Thank goodness because seeing him try to keep his balance while on an airplane and that tiny little restroom--ugh!! So stressful!
I have the Dallas # and will reach out to them tomorrow.
What is ACLF? How old is your husband? How long has he had PSP? Are there any neighbors that wouldn't mind sitting with him while you take a break?
Write back soon---hang in there Audrey. You are not alone my friend. XOXO.
Nikkie, has was diagnosed just a little over a year ago. ACLF is Assisted Care Living Facility, he would not live with me at home. That is not an option. My son in law is just plain cruel and my daughter never said a word. My hubby, the love of my life is 78. Lived across the street from me, met in HS and that was it. No neighbors they are all young and don't talk to us at all. He is calling me. Going to bed, prob cry myself to sleep. Don't know what I would do without the friends I have made on this site
I don't know how I feel about ACLF. I just feel terrible even thinking about doing that to my guy but I think at some point health for the carer is so important. I am trying to get our home equipped with handicap accessible stuff as fast as possible.
What a beautiful love story--he was your neighbor!! I love that! My guy rescued me when I was at my lowest and so I refer to him as my knight in shining armor! Now it's my turn to rescue him. True love!
Nikki, If he is a vet you can get a lot of things from the VA. I did, grab bars, shower chair which he can sit in on the outside of the tub, then there is button on the bottom which you press and he slide into the tub or shower. Medicare doesn't supply a lot of things we need, no charge from the VA. Depends, I can't remember what else I have gotten. Oh yes, an aide 3 times a week, 2 hours a day. Trying to bump it up to get more hours. Read somewhere on line, can't find the darn link that they will supply to 40 hours of help per week. Have to annoy the VA social worker some more. He helps me out a lot.
Yes, he is a Vietnam Vet and we just had an appt. with a VA rep a few weeks ago. I am just waiting for response. I am glad to hear they covered alot for you all. I will follow-up with VA because that would be a great help. We still have alot to go. Thanks for the tips.
Very thoughtful of you to let us know about about your husband's STEMGENEX procedure . You know that we're all hoping for positive results for you both ! And maybe there will be an intervention to relieve your husband's pain even earlier than 6 months. Hoping to hear great news ! Best to you and your husband , Elise
I do hope your husband gets some relief from the pain. It sounds awful. I also hope relief comes sooner than they predict. I wonder what exactly is causing ithe pain, and how the stem cells change the situation. It's hard to accept that traditional medicine is so useless at treating some kinds of pain, although I know it is. It should be better at that! Good luck to you and your husband. Keep in touch! Love, ec
Thanks eastern cedar. So we had our post-op visit this morning and the medical team said we could see some changes in about 3 months. I need to start journaling so I don't miss anything. They want to get to the root of the pain because no one has been able to find the main cause of the pain. Not a spine problem, not a nerve problem but possible muscular because of the stiffness/tightness from PSP or a neurological signal causing pain. Who knows. We are finally at stem cell treatments because we have exhausted all other possible pain relief plans. I HOPE, HOPE, HOPE for some relief soon.
Has anyone ever found out what is causing the pain? I hope he gets relief from it a lot earlier than 6 months. I'll be very interested in the results. It's amazing what stem cells can do.
No one has been able to get to the root of the pain. We have done injections, acupuncture, PT, meds, massages, chiropractors, etc. These doctors mentioned it possibly being a neurological signal that is causing pain. I hope the stem cell gives him some relief. Today is just wiped out so I am glad we are not traveling back to Texas until tomorrow. I will keep you posted.
Thanks NannaB for your feedback. Never gonna give up on my guy!
Hope pain is relieved and the procedure has some effect on other symptoms. 6 months is a long time in PSP terms, if he is still able to do things do them now don't wait for pain to go.
I know--when they said 6 months I was thinking ARE YOU FREAKIN' (sorry) KIDDING!! We need help now and fast. I almost wish I would have jumped on it when I first saw StemGenex website last summer 2015, but the whole not FDA approved freaked me out. The way I look at it now, who cares--we have nothing to lose at this point. We are going to try it all! There is a recovery plan and they track my guy for one year. They highly recommend nutrition plan--the Maker's Diet and other vitamins and supplements. I will share all those with you all.
Sending prays to you both. Kim has been pretty much pain free of her leg pain since she had her injection, which will be 2 years this May. Did they inject any in his lower back?
No. They did not inject lower back because all MRI's/CT Scans show no issues with his spine. They say he has a spine of a 35 year old (he sure liked hearing that ). They believe it is a neurological signal that is triggering pain. Today, he is just tired and will probably be resting most of the day. I hope something positive comes out this procedure. Hope, Hope, Hope! Keep you posted.
Thanks AVB. We hope for positive outcome and even if it is a terrible outcome, I will let my PSP friends know. We just need some pain relief asap but if it can help in improving the double vision or cloudy mind, we will take it. Keep you posted. Thanks for the good luck wishes.
Wow, well done, you must try everything to get help for your husband. I'm so sorry to hear he is in such continual pain. Goodness knows what to do but your love and care must mean everything to him and help him cope. I do hope the treatment brings an improvement. I am impressed with your endeavour and efforts. Look after yourself too!
As long as he is willing to try it, I am doing it! I have got to try these things before he can no longer travel. Today he is exhausted and having to get up every 20 minutes to use the toilet. They had so many fluids going through his body yesterday that he is flushing it all out today. I am glad we are not traveling back to Texas today. Today it is a day to rest and recover.
You are absolutely right about looking after myself. We have been consumed by this awful disease just like all of you! Rockin' our world--not in a good way! I need to depend on family more. My brother in law (husbands brother) travelled with us to CA and I am so glad because it has been an extra set of hands to assist me with my guy. I need to get him to help me more back home. Our daughter is starting her masters online and she will be moving home for a year while she works on her graduate degree. So grateful that she will be able to help beginning in the Fall. I need to watch my food intake because I have noticed my clothes are getting tight! It is stress eating that is the problem. Ugh!
Thanks for your feedback. I will keep you all posted.
Thank you for your reply. I did smile at your reference to weight gain as this is exactly what happened to me!! By the time it was all over not only did I not know who I was any more but I could not recognise my self when I looked in the mirror. My cupboards are full of clothes which are too small and I had not noticed such extreme change. I was just so tired with coping with it all. It's good that you have noticed in time. I think it is the extreme exhaustion which comes from the stress of it all that makes one unable to think and have the energy just to feed oneself properly. It will be good when you get more help. However, you do seem to be doing a great job. After, I went for a holiday to visit my son in Oman but was too ill to be in company full time. I stayed in a studio flat on my own and I remember sitting on the bed when my son had left me and thinking ' My God, have I actually survived this and yes, I really am still alive !' It really is a difficult journey but like you, I did my very best for my father and I am so happy that I did. I regret nothing knowing this and I am sure it will be the same for you and all of us as we struggle to find a solution and do our caring and loving. X
I try to stay ahead of the game, but believe me I have my moments when I just break down and just cry, cry, cry! Not a pretty sight but I never let him see me cry--that would devastate him!! I just get myself back on track and balanced and then I am good again. My husband is very appreciative and I have always told him, if you lose your voice and can't say "thank you", how will I know that everything is okay? He said, I will forever try and give you a wink and I get those winks pretty often. So very grateful for a wink!
Back to the weight loss (LOL)----I am going to follow that health plan they are going to give my guy! I have got to get with the program! I know what you mean by being to tired--this disease is exhausting! Like you said, what a difficult journey, but you are alive and that is the best part. You did a great job at caring for your papa, now it's your turn to take of YOU! #itsgreattobealive
Dear Nikkie, Just as I sit here thinking of your predicament and the pain in your husband's leg, as my mind goes over and over all the things we may try. Have you done any research on medical cannabis, cannabidiol. Maybe the relaxant effects of that might help.
Talk about crying, don't you wonder how our bodied can continually supply the tears. ?The salt and water seems to be on tap as an endless supply - amazing.
Yes--endless supply of tears!!! Ugh! So many tears and uncontrollable at times! Hate to see my strong, adventurous, successful, loving husband just fall apart.
I would have to leave the State of Texas to get a supply of medical cannabis, but believe me the thought has crossed my mind. I know I can find it here but my husband is so old school, he wouldn't dare break a law. Then again, there is always a first time.
Well I agree with your husband I'm a bit old school myself but desperation rules sometimes. What about approaching a MS specialist as I believe this drug has been used for years in this field in the states. A specialist of this kind may be willing to give it a trial. After all that is all we want at first in the course of trying to find some solution and relief.
I hope and pray that this will work for your husband! So glad your brother-in-law was able to go with you too. Sounds like you will be getting some much needed extra help at home. Be safe going back home.
Hi psplife I believe this will work for you as it has for many others. Keep believing in positive results pain relief and any other positive outcomes. Prayers for you both. Noelle 21
I am journaling daily so that I don't forget. I really hope the stem cells wake up/activate. According to the doctor, it will take 3-12 months. I have got to stay positive and keep him thinking positive. Today we went over to the local farmer's market and he usually stays in the car and waits for me but today he said he wanted to get down. He walked for a bit and then sat on a chair while I shopped. It was probably about a 20 minute stop--I was impressed that he wanted to do that today. That hasn't happened in a very long time.
Thanks for your prayers and I will keep praying for all of us dealing with this awful disease! #ihatepsp
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XOXOX
and I get those winks pretty often. So very grateful for a wink!
stem cells
No more meds for my husband!!!
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